This Limbo

And we shall call him...

2012-02-12T21:06:00.000Z

I have a habit of naming everything. In the past, I have named plants, cars, pianos, guitars, and dialysis machines.

Now I have to name my kidney.

From day one, I have believed with an almost unsettling sense of conviction that my donor was male, and that this is therefore a 'boy' kidney. My fellow transplantee - the girl who received the other kidney from the same donor - had the exact same intuition.

So one has to think. How to christen this organ; how to sum up in a name what it is to me; what it means. How to give it an identity that will carry it into my future, hopefully for a record-breaking number of years to come.

A name that personifies a force for good?

Bono (kidney is sarcastic)

A name that personifies longevity, and a force that just can't be killed off?

Cher.

A name that puts a smile on someone's face?

Declan (think about it).

But none sat well with me, or gave sufficient respect to this awesome event in my life, and the fact that someone died for this.

The choice has been made, and from this day forth, my kidney will go by the name of Emmet.

It is a German name, and this is my exaggerated nod to the bank bailout-sponored truth that it was Dem Deutschen Volke who paid for my transplant. This whole country - including its health service - is largely being bankrolled by Merkel's taxpayers.

Emmet means 'strong, industrious' - two qualities that I need from my new organ in abundance. I need it to stand up to my immune system, which will try to attack it on a regular basis. I need it to work hard for me, to win 'Employee of the Month' every month; to be the organ that is accused of being my pet by the native organs that breathe, beat and filter.

In terms of my reasons on a personal level, the majority are caught up with a long-held admiration for my history hero, Robert Emmet.

The Robert Emmet who went on to wage a tireless crusade for the dream of Irish freedom from the British, was the 17th and final baby born to his mother. Thirteen of those babies who came before him died, through miscarriage, still birth or in the early hours and days of their infancy. Robert Emmet was a survivor, a fighter.

R.E. took on the cause of another people. Though a wealthy Protestant who should have lived comfortably as a loyal subject of the monarchy in 18th and early 19th century Ireland, he devoted his short life to improving the lot of Catholics and Nationalists. This is the kind of sympathetic nature I need from my kidney, who was born to, and whose natural home is in another body.

For more than two years now, I have lived in a place that has huge associations with Robert Emmet. This is the place I have felt most at home, of all the addresses I have had in Dublin. I spent hundreds of my nights on dialysis in this very spot. I hope there will be hundreds of nights ahead of happiness, here where I am among friends. This is the suburb of the city where R.E. came to seek refuge. I want my kidney to have a similar regard for my body. It - he - was obviously in danger in a body that had met with some accident or tragedy. I hope he sees me as some kind of saving grace, just as I see him.

On a related topic, Robert Emmet was a man who had formidable women in his life, who relied upon them. Sarah Curran, with whom he was in love, and Anne Devlin, who helped him plan his rebellion. Like any female, I like a man who is comfortable in the company of a strong woman.

Mystery. This is my other reason for choosing to name my organ after Robert Emmet. Nobody knows where Robert is buried. Before he was hanged, drawn and quartered on Thomas Street, he gave a speech from the dock, where he said:

"When my country takes her place among the nations of the earth, then, and not till then, let my epitaph be written."

His wish was granted, and he was interred by men who kept the whereabouts of his final resting place to themselves, men who died long ago and brought his secret to their own graves. There is no burial place at which a free Irish people can worship.

I suspect that whatever may lie in store for me, my transplant will remain the greatest mystery and wonder of my lifetime. It is shrouded in questions to which I will never have the answers. Who my donor was, what happened to them, was it really a boy as I believe it was, what was he like. I will never be able to visit his grave, to leave him flowers.

Finally, I hope my kidney will last for decades, and that I will have the opportunity to explain the scar on my tummy to a number of future young curious minds.

It thus needs to have an enduring recognisable quality, it needs not to draw blank expressions from school-going teenagers, as I regret to say the name Robert Emmet probably will.

Thanks to Stephanie Meyer there is a fictional boy that I suspect will be familiar to young ones for many years to come. There is a character called Emmet in the 'Twilight' series. Admittedly, he is a vampire, but he is a good and disciplined vampire. Not an indiscriminate blood-sucker like Dracula. And of course, vampires do live forever.

So that's us. Emmet and Reg. No. Emmet with Reg.

A story of boy meets girl, with a twist.

The newness of me

2012-02-04T23:16:00.001Z

Three weeks in, my friends.

Now that the pain is passing, and that I only feel the occasional sharp stab; now that I can walk for ten minutes without being breathless as a result of being on a ventilator on that special, special day; now that the staples have been removed, and the scar is healing nicely; with all these baby steps, I can catch glimpses of how life is going to be.

Let me tell you, it is beyond wonderful.

For those in the know, my creatinine now stands at 77 (down from 860 pre-op); my blood pressure is coming in at about 110/65 all on its own, without medication; I am only required to attend one appointment per week at the hospital where the transplant happened.

I am quite enjoying frequent visits from the ghosts of evenings and nights past. Quick visits in the form of the reminders that were built into my brain for more than two and half years. Moments of 'I must' that delightfully give way to moments of 'oh, that's right, I don't have to anymore'. They make me smile.

It will take a while to become accustomed to how things are now, and deal fully with how things were. What happened, what I went through. In truth, I didn't really deal with the nightmare while stuck in the middle of it.

But look at me! I am well! I have a kidney that works, and I am drinking 4 litres a day, and am going to the bathroom constantly, and I am eating what I want! It is amazing, and it is worthy of exclamation marks.

If there are any downsides, they are of my own making. I am unnerved by the simplicity of everything now. I have gone from needing 9 hours of treatment at night...from having to take a tablet every time I ate, a blood pressure tablet every day, several other tablets at night...from several daily three-minute handwashes with Hibiscrub...from having to set up a machine every evening, and change dressings on my tummy after every shower...to this...

I now take a few drugs at 10am, and another few at 10pm. That's it. It has left me with a constant nag at the back of my mind. Like the feeling of having possibly forgotten to turn the cooker off or lock the back door when you leave for a holiday.

It seems so easy, too easy. I guess it's understandable when your body is transformed from high maintenance to almost zero maintenance in the space of a few hours.

For so long, I knew how to be sick. Now I have to learn to be well again, to enjoy this good health, rather than exist under the shadow of the disease that killed my own kidneys.

I use the word 'learn' deliberately. There has been a shock to my system with all this that I had not factored in, in all my forward wishing and planning for life post-transplant. It is the shock of the boundaries suddenly having been removed. It must be how convicts feel upon release after a long stretch inside.

All of us who are in situations where we are hostages, whether through our own actions or our own misfortune, we develop a form of Stockholm Syndrome. Not a love, or even a like for the force holding us captive. But there is comfort in what is familiar, even if it is unpleasant. A comfort in the known.

The unknown is terrifying. I had one meltdown a few days after leaving hospital, where I convinced myself the kidney wasn't working. The newness of my body made me uneasy to the point of a self-induced, and self-propelling bout of hysteria. I didn't know how I should feel, what was normal.

I cried like I haven't cried in a long time, but is was a release I needed. I hadn't acknowledged how wound up I was, the pressure that this transplant brought to bear. For years, I had placed all my bets on this surgery working out. Now I was home, and all that pent-up hope was overwhelmed by the actuality of the event having happened, and now here we were. Just the two of us.

It's like meeting a fella in Coppers on a Friday, and emigrating with him the following Friday.

It will pass. It is passing. Every day, I feel more confident in myself. I feel this kidney as an ally, a friendly force that is rooting for me, just as I for it. I find myself placing my hand on it throughout the day. It lies just under my skin almost in the middle of my tummy, something which some will inevitably find weird and possibly freaky, but I take solace from it being so present, so obvious. It is there, and it feels right.

It will look after me, so long as I look after it.

Friday

2012-01-21T19:49:00.000Z

The alarm went off at 5.50am. Another day ahead, and as always on the cusp of the weekend, I was flagging badly, tired and declaring in my head that no matter what, I was staying in bed all day on Saturday.

Up, and over to Brendan. The figures from the night were disappointing again. I swore to myself, knowing that at my appointment in the Mater later that day, my case for remaining on 9 hours per night, and not increasing to 10 was weak.

But, there was the promise of an iron infusion - the first I needed since starting dialysis, and another sign that I was going downhill, but it would give me some fake form of energy to cling to. My haemoglobin was down to that level at which keeping the eyelids up required actual effort.

Into the shower, noticing on emergence that the mirror was particularly unkind this morning. Even after 9 hours in my bed, I had the look of a girl who was strung out. The eyes. Oh, the eyes. So sad, so lacking in what youth I had left.

The moments of self-criticism were fleeting, as always. Vanity afflicts me in a different way now. Perhaps that is a sign of maturity, or of just plain giving up, or giving in.

The usual dash to get ready, to pull on the clothes and the boots that would make the people downstairs leave another note in my letter box, saying I disturbed them with my heels. On bad days, I cared little for their light sleeping, and this was starting out as a headache-inducing morning.

On to the make-up, to put on the mask for another day around people who knew little of the devastation that was worsening in my insides.

6.36am. From the bathroom, I hear the faint ringing of my phone, trapped somewhere underneath my heavy winter duvet.

I knew. I just knew.

A mobile phone number flashing on the screen. That threw me for a second. I expected always that it would be a Dublin number. Or at least a blocked number.

Hello?

Hello, Regina. This is Regina, one of the Transplant Coordinators at Beaumont Hospital. We met once before.

(Breathless) Oh, hi.

Regina, we think we have a matching kidney for you.

Oh my God.

Are you well at the moment?

Yes, yes.

Well, can you make your way to us as soon as possible? You know this isn't a guarantee that you will get a transplant. We will have to do some final tests when you get here, so please don't get your hopes up to high.

Yes, I know that.

Ok, we will see you in St Teresa's ward then. Do not eat or drink anything from now.

Ok, thank you, thank you. I'll be there within the hour.

*Hangs up*

Oh my God, oh my God, oh my God *paces floor of bedroom*

What do I do? What do I do?

A few phone calls of my own, to one best friend up the road, and to the brother. Plans hastily made for a taxi to be ordered.

I wonder what I will remember of the morning, this morning that changed everything. Will I remember that I locked up my apartment and made it as far as the lift, only to think of my Dad's memoriam card. I went back for it.

Will I remember that upon getting to my dear friend's house, she got into the taxi, and immediately said "Jesus, did I turn the hair straighteners off?" and had to rush back into her place to check.

Will I remember that we had no money on either of us, and had to stop at a banklink on the way?

Will I remember that the taxi driver was the slowest taxi driver in Dublin, and that he appeared to take his foot even further off the accelerator when I told him that this was actually a life or death fare for him?

(Seriously, how often does a passenger utter those movie lines to him?)

Will I remember that he appeared not to really know where he was going, and that he had to perform a dangerous three-point turn in some housing estate, the entrance to which he had mistaken for the entrance to the hospital?

Will I remember that he then dropped us at the car park rather than the revolving doors through which patients enter, and took an age to give me my change?

The rush through the corridors of the hospital was frantic. Having only set foot in the place on two occasions, I had no idea where to go, reception had not yet opened, and were it not for the intervention of some kindly doctor, we would have both just stood there, gazes wandering desperately over the list of wards on the wall, while my new kidney lay in wait for me.

We found it, and presented, and I was unsure as I stood at the nurses' station of what exactly I should say.

"Hi, I'm here for my transplant".

"Regina?"

"Yes"

Shown to a private room, and the last leg of a two and half year wait ensued. The climax. The last hurdle. My bloods were to be checked, to see firstly if I was fit for the surgery, to secondly see if I was a match for the donor.

The time passed surprisingly quickly. Texting and making calls to bring all who love me up to speed with this excitement, this miracle in the making on an idle workday morning, while they were just coming out of sleep and turning on the radio to hear the news of the rest of the world, while the news that was happening to their friend was much more major.

I was struck by the degree to which all shared in my joy, the realisation that my health meant more to friends and acquaintances than I had imagined.

Another friend arrived, to add to the chatter in my room. Doctors came and went, asking their questions. They told me another girl of about my age had also been called for the other kidney.

Then, the verdict delivered. The match was good. If I had a moment that morning, it came now. A moment borne of pure disbelief that it was finally happening, that the tense, fraught section of my life story may be coming to a close, to allow for the relief of some happier notes.

I was to be brought down to surgery first. Ring your family, tell them, they probably won't get here before you are put under. Anti-rejection drugs and steroids flushed through my system, the attractive anti-clot socks pulled on.

My friends accompanied me all the way to the double doors that separate those who look after from those who operate, looking down at me on my wheeled trolley, joking to put me at ease, when I suspect they were feeling more butterflies than I.

There were no nerves whatsoever on my part. Only a need for this that was stronger than any fear that the human experiences when knowing they are about to be opened up.

What can I tell you of events after that? Nothing. The hours were lost, the clock far worse an enemy at this stage for those who were aware of the time passing than on the one under the knife.

I was woken in recovery at 5.45pm. My hand went straight to my tummy. The tube was gone. I knew what that meant. Success. The operation had gone so well the surgeon was confident I would not require dialysis again.

But the check of the tummy was just the physical confirmation of what I knew as soon I opened my eyes. The clarity of everything, the lifting of the dialysis fog, there was a sharpness there that had been absent for a very long time, even as I just came 'round, which should tell you much about the effect my nightly treatment had on my cognitive abilities.

I was brought straight back to the ward, and I asked for my brother. On oxygen, and hooked up to several wires, I must have scared him a little, but he didn't show it. I don't think I'll ever forget the smile on his face. He took my hand.

Under the heavy influence of morphine, I insisted on him handing over the phone to me, to talk to my mother, and my friends, the same friends who had seen me off to the blessed hands of the surgeons.

I told them all how happy I was, and then I went to a blissful sleep.

It is now Day 8 for me and the kid. He is outdoing himself, working in hyperactivity mode. He had taken my blood levels down to those of a normal person within two days.

There is pain, of course, there are staples in my tummy, there will be a scar, but the limits are gone. I can eat what I want, I can plan again, I can consider holidays, and nights out, and a 30th birthday party in March that will be unapologetically over the top.

There is a quite a bit to go until I am fully recovered, but last night, on the first night at home since the best news of my life, I had my moment, in my own bed, in the dark, in the silence. Knowing I had made it.

Brendan sits quietly now. He will be collected, along with all my dialysis supplies next week. It was an uneasy friendship we had, and the kid is already providing for all my needs in a way that Brendan never did. He kept me alive, the kid will help me live.

There are a thousand different thoughts in my head today, and collecting them and putting them out there in a more eloquent form will take time.

But I just wanted you all to know the story, to thank you for your support and for your good wishes.

I will write further when sitting for too long at the laptop is less painful - of how I'm getting on, of my donor, that person who is lost to the world, but who left a legacy that is immeasurable.

For now, have another picture. This time, of myself and the girl who received the other kidney from my donor.

We will share this experience for the rest of our lives, we will share the anniversary, we will hopefully watch each other progress in adventures of all shapes of sizes, share the simple pleasures we have been granted by having a working organ once again.

There is much for us both to smile about.

A brighter side of me

2012-01-08T12:24:00.001Z

It's strange, the different relationships I have with different people, and their varying impressions of me.

To my 'home' friends, I think I'm seen as a bit cynical, a bit hard, very logical, with unyielding views of what's black and what's white; to my college friends, I'm seen as the opposite - a bit of a girl, a little naive, a bit unhinged.

To work colleagues, I'm regarded as quiet and shy and probably a bit boring, but more fool them. I'm just not one to show my true self with people who know me by the ID card round my neck.

To the people who read my blog, I fear I may come across as depressed. Or worse still, depressing.

How terrible, and how unfair. I must, in this new year, try to balance my words and submissions better - a little light relief here and there, to show you that I may not be able to eat anything anymore, and I may some days only be fit to be laid out, but I still smile more than I frown.

Yes, I am worried that my health is starting to worsen.

And yes, I am struggling more than I was. Struggling mostly to keep bitterness at bay, and to not feel increasingly like I'm watching my friends' live life while I'm being pushed to the sidelines.

But I am happy. I still get dressed up for nights out, and I make myself and other people laugh. I plan my weekends, and take enjoyment from all the little things that cannot be taken from me by dialysis.

And I look forward to the day that will come - this year - when dialysis will be done, and a transplant will have been performed while I'm off in some unconscious land for a few hours.

Imagine that day, when the pain is gone and the kidney is settled, and I will be able to go to bed without being hooked up and smile to myself in the dark and say:

"Reg, you did it, you got through. You made it".

(To prove happiness...two dialysis girls out for Halloween. My friend Sonia and I are Big D sisters, Nicole Kidney-mans...and we have some laugh)

Next year all our troubles will be miles away (I hope)

2011-12-22T20:06:00.000Z

I won't lie to you. It has been a difficult time.

There are now nine hours of dialysis to endure each night, and once the Christmas of plain turkey, no spuds, no chocolate and no alcohol has passed, I can expect to be increased to ten hours.

My blood results have continued to disappoint. Where once I was largely left alone by my medical people, there are now phone calls. They speak in urgent and sincerely sad tones about how young I am, how careful they need to be with me.

So as I prepare to head home for Christmas tomorrow, it is with a heavy heart. I have had a few meltdowns in recent days, which is unlike me. A lot of finding myself sitting in the dark, a lot of crying.

The extra hour lost to a machine every night has taken what stubborn fight was left in me after two and a half years and almost 1,000 nights of dialysis.

Robbing time from me. Even more time. Seven more hours every week.

I am entirely spent. Emotionally. Kidney disease has taken so much from me. It has chipped away at my physical health, my mental health, my relationships with my family, my relationships with my friends, my career, my plans, my twenties.

I wonder if this is what they do. If they leave you on the transplant list until you reach the point when death is preferable to this horrible existence.

In my case, they are certainly close to succeeding.

The devil's in the diet

2011-12-13T22:07:00.000Z

It has been a dreary week. Mostly because I was placed on the strictest of diets by my medical people when they caught sight of my blood test results last Tuesday.

No coffee, no chocolate, limited fruit, limited veg, only a drop of milk daily, no potatoes, no chips, no crisps, no sauces, no alcohol, no processed meats, no nuts, no dried fruit, no herbs, absolutely no bananas or avocadoes.

Those were my orders. Which begs the seasonally appropriate question:

Do they know it's christmas time at all?

I went along with it, of course. It was the repetition of the term "we need to keep you safe" by more than one of them that sufficiently frightened me into submission.

The potassium is the thing. It's high right now, and while I can cope with the far-off possibility of a slow, painful death, the fear of going out like a light because of a fatal irregular heart rhythm challenges the rebel in me, quietens my rage against the medical machine.

I'm in the hospital again tomorrow, for repeat tests. If the word back from the lab is no better, there's talk of putting me up to ten hours a night on dialysis.

If that hurdle presents itself, I am looking at 70 hours of treatment each week, and I have to wonder if at that point it might make more sense to consider haemo-dialysis.

Would I not be better off going into the hospital every other day for four hours of dialysis? Could I bear to have a fistula in my arm? Could I live with quitting work, to quietly and finally ceding to this illness for once and for all?

These are all the questions that will await me in the next new year of groundhog waiting-for-transplant days.

For now, I'll settle for improved results tomorrow and being allowed back on one coffee per day.

Happy Christmas Reg.

The creation of a monster

2011-11-30T10:36:00.000Z

I am thinking about what I want to do after my tranpslant.

Wake up.

That’s first on the list.

Eat, pray, love. That’s what the book which became a major motion picture advises.

Only I won’t be able to eat for fear of the obesity epidemic that is prevalent amongst the post-transplant community.

And only I won’t pray, because I don’t believe. But I will bear an eternal and enduring sense of gratitude for my donor. I will think often of that person, probably at the most significant moments that await me in the coming years. I will live my best life for them as well as for myself.

I will love, and love better than I have of late, because I will be free of the bitterness that currently colours my relationships with my friends; I will also have shaken off the monkey on my back that has made me selfish and unwilling to give too much of myself to my family.

Fly.

This is the year dot again. My new life will be one long holiday. The destinations are lined up in my head. Weekends to start with, not too far from home. Then long-haul. All the way to the other side of the world, to places where dialysis has never even been heard of.

Avoid.

To be free to go out for a walk without my mobile phone. Or be free to not worry about the fact the film is showing in one of the lower floor cinemas in Dundrum where there is no reception. Or decide I just don’t feel like talking to anyone today, so I’m going to turn the damned thing off.

Sleep.

On my tummy. Without being attached to a machine. Once the pain of surgery has passed, this will be my single greatest joy.

Flaunt.

I will be that proud of my scar and that delighted to be without tube, I foresee a lot of flashing and invitations – nay, commands - of “here you, look at my tummy”.

You have been warned.

Out of the mouths of babes

2011-11-14T20:55:00.001Z

From the time she got her crawling and walking in gear, and the time she could form all the wonder in her mind into words, Grace has toddled down the hallway when I arrive home for a visit, and she has looked at my machine.

She has seen much - as all kids do nowadays - since she was born in a millennium and a decade with more zeros than sense. She knows how to use a mobile phone and a DVD player and an ipod and her favourite toy for a long time was her Peppa Pig laptop.

But this machine was different to her, entirely mysterious, if only for the fact that as far as she was concerned, I was the only person in the whole world who had one.

And when you're 2 years old, you think you want everything that everyone else has.

She has always questioned, and I have tried to frame all of my illness into a simple answer, using the language of a children's television presenter.

I've never been certain that she understood.

But on Saturday, when I planted my machine down as normal, she didn't ask anything. She gave me all the answers.

"That's your machine, Gina. It'll make you feel better, cos you're sick".

Ya. That got me.

I often find it is when other people speak about my situation that I get most upset. My life is what it is, and I live it, but when it is a story to be told by others who love me, I see it all through their eyes and it breaks my heart.

But hearing Grace say it. Well, that was worse somehow. Maybe because I have always liked to think she was one of the few who looked at me like I wasn't ill, like I was whole.

Now she knows too.

Here I am again

2011-11-05T15:19:00.000Z

Firstly, in case any of you opened this post, expecting to read glad tidings, I'm afraid the return of my words to these pages has not been prompted by a transplant.

Believe me, I wish it was.

I am back because I missed this, and because I have nowhere else to go with what is an increasingly weighty burden. After two and half years of dialysis, I have exhausted the shoulders to cry on, the sympathetic ears of friends who are leaving me behind.

That's not fair. I am letting them go on ahead.

Old news, that's what my plight is. Everywhere around me, friends are moving on and taking exciting turns into new jobs, new chapters of neatly laid-out lives, births and marriages, travels and experiences.

And I stay standing still.

RTÉ.ie Radio 1: Documentary on One - Wanted: Kidney

2011-11-03T13:37:00.000Z

RTÉ.ie Radio 1: Documentary on One - Wanted: Kidney

The last post & a familiar chorus

2011-06-21T17:38:00.000+01:00

I am two years on dialysis today. I wish it was winter, because it is the kind of anniversary that I would like to cloak in darkness. I would rather not have opened the curtains today.

The most relevant statistics now stand as follows:

There have been 728 nights of dialysis (two nights off, with permission from my consultant).

That amounts to 5,824 hours of being attached by a line that runs from my tummy to my machine.

Or 242 full days.

I have carried 1,092 litres of dialysis fluid around in my tummy throughout the daytime hours, and by night a total of 8,736 litres have flowed in and out of my abdomen.

I have gone through (and duly recycled) roughly 3,504 cardboard boxes.

I have taken about 8,000 tablets and 30 energy injections.

I have disposed of about 200 bags of hazardous medical waste.

I have spent 0 nights in hospital

I have now been on the transplant list for 22 months.

The average wait for a new kidney is now something like four years.

Now for the really bad news (not really, really). I have decided to stop writing this blog. I didn’t envisage two years of this when I started, and now there is the fear that I will start to repeat myself, because when you re-live the same routine day in, day out, you inevitably return to the same gripes. There is nothing worse than a writer who recycles old metaphors.

I realise I may be doing a disservice to the few people who read Limbo on a regular basis, and who have hung on in there, waiting for the glad tidings of a new kidney.

To those followers, I offer my sincere apologies, but I also advise that in a few months’ time, if I ever cross your mind, that you imagine me, post-transplant, on a beach somewhere - albeit covered from head to toe in Factor 50 - but sipping some exotic cocktail, and enjoying my freedom, released from the infernal groundhog day that is peritoneal dialysis.

Regina xxoxx

Must remember to keep waiting

2011-06-01T11:56:00.000+01:00

In this ordered society, you have areas for waiting. You have receptions with pleasant faces and practised phone voices; lobbies with comfortable chairs and air conditioning; a seat or a bench outside the headmaster’s office; actual waiting rooms where you flick through outdated magazines before seeing the doctor or dentist.

I like this form of waiting. The setting of a holding area, and then the crossing of a threshold, and the meeting or appointment plays out.

But what if you are all the time waiting? While you’re eating, while you’re shopping, while you’re sleeping, while you’re carefully painting your toenails. Is that waiting at all? There is no specific activity to it, no area in which it is confined or where it happens. In such circumstances, it’s easy to forget.

I compare it to being stood at a bus stop for a long time; minutes turn to hours and you stop looking up the road, in the direction from which the bus should be coming, and you get distracted. You start looking around, and you get caught up in the life around you.

You are only jolted back to remembering when you try to move too far away from where you are stood, and you realise you are chained to the bus stop, bound to this need to wait.

At night, the fear comes to me. I think about getting the call, and my heart starts pounding. The magnitude of it overwhelms me. Some night, I will have to get up and organise my thoughts and carry myself to the hospital, and phone my mother in short, ill-controlled breaths to tell her it’s happening, and then sign my life into the hands of a surgeon and undergo a major surgery. Just like that.

I’m sure I have written before about the devil I know in the form of dialysis often seeming to me like a sanctuary. I know the deal here. It’s not a great scene, but I’m managing. When they plant a foreign organ in me, there’s no knowing how my body will react.

It’ll be a matter of luck, whether my immune system will treat my new kidney as a burglar in the dark, or whether it will regard it as I regard another girl on the other side of the street if I’m walking home at night – a stranger, but a welcome, comforting presence, a support if anything were to happen.

After nearly two years of waiting, I feel totally unprepared. I wonder if I should put some elbow grease to this now, if I should start setting aside some period of each day…for a mood of expectation. To translate waiting into action, maybe you wish or hope or conjure images.

Perhaps if I put an uncomfortable chair in my hallway – that might be the place for it.

Garret Fitzgerald RIP

2011-05-19T16:26:00.000+01:00

The one and only time I ever drank a cup of tea was in the company of Garret Fitzgerald.

I was sat in his house, in the room reserved for his thinking and writing time. It was the most chaotic space imaginable, filled with books and papers, plants which appeared to be growing out of the walls and out of nowhere at all.

It reminded me instantly of the film, Jumanji.

I think it must be what the inside of his head looked like too, an expanse of clutter that looked too busy for potential, but out which there came brilliance in various forms.

He had agreed to help me out with my thesis, and he patiently answered all of my questions, which I’m sure were predictable and inane. He spoke about his wife giving him a haircut before his first day in the Dail, and how he didn't like it when they called him "scruffy". Bertie was scruffy, he said, I was just untidy.

I sipped at the tea, and he continued on. Raced on, in fact, but that was his way, hurrying through each sentence as though his words were chasing each other.

Years later, we met again. We were both guests on Tonight with Vincent Browne, back when VB was still on Radio 1 late at night. I spoke about the subject that I knew well, and then I shut up. A verbal paralysis overcame me. As if there was anything I could add to a general discussion about the world that would be equal to a contribution from Dr Fitzgerald.

The second last time I saw him was at a debate in UCD. He was there with Jeffrey Donaldson, discussing the history of the relationship between Ireland and Britain.

I remember our rather youthful lecturer, from Northern Ireland, being shocked at the rapturous reception Garret received from the congregation of students. The lecturer pointed out that none of us were actually old enough to remember Garret as Taoiseach.

That was true, but I have often been told that when I was a baby I used to cry when Charlie Haughey came on the television. Garret the Good had the opposite effect.

I saw him last on March 9th, on the day when Enda Kenny was installed as Taoiseach and Fine Gael entered Dail Eireann with their massive majority. Garret was making his way around Leinster House, walking gingerly with the aid of a stick, chatting to everyone, but mostly just observing, and smiling.

Nobody would begrudge him the smug look he wore that day. I caught his eye on the grand staircase, and there was the peculiar glint of the political animal. For all the cynicism that must grow through a lifetime in politics, there is still a wonder about the world that keeps the politician young and in some degree of awe at the theatre, the power, the history of it all.

Today, Garret is the talk of the town, upstaging the queen. His last great gift to Anglo-Irish relations.

The Calvinists Rocked in '96

2011-05-18T18:08:00.001+01:00

School meant nothing to me in the September days of the year 1996. In a disconcerting reaction to the events of the summer holidays, I was reluctant to return to the classroom.

That had never happened before. The weeks before classes recommenced were generally all about picking pretty pens and notebooks and looking through the new books, in unashamed, nerdish anticipation.

The apathy of that term was lifted only with one particular history class that brought me back to my learning. In studying the Reformation, we were introduced to the Calvinists, and I liked the cut of their jib.

Specifically, I liked the idea of Pre-Destination, which lay at the heart of their doctrine - the idea that before each human is born, their life is laid out, their course is already set, and the day of their death has already been programmed by god.

This brought me great comfort, because all at once the events of the August 8th just past made some sense to me. It was reassuring to think my Dad had died on a day that had been determined long ago, that he was taken because that was simply the plan.

I think about Pre-Destination a lot nowadays, and how it fits with my own circumstances. That was a revelation, the day it dawned on me that without the intervention of modern medicine, I would have died at some point in Summer/Autumn 2008.

Was that my time to go?

Maybe it was. I have always joked that I peaked too soon in life. I experienced and lived with loss as a teenager, I knew certain grown-up responsibilities and worries at a young age, I had success earlier than others.

Let’s say, (for the sake of my 96th blog post, bearing in mind that my material is becoming increasingly scant), that I was meant to die in August 2008. By that point, I had written and published a book; I had worked as a journalist with some degree of success; fallen in love; fallen out of love; lived for a time in America; seen sunsets and danced ‘til dawn; gotten drunk; tried smoking; tried some drugs; I had mourned and had known days of celebration; I had worn a cap and gown; had paid taxes and passed my driving test; I had walked the sand of several beaches on the shores of the Atlantic, the Adriatic and the Pacific; I had appeared on television and radio; had learned enough to know enough.

A life lived, really.

Then there is the reality of the last three or so years, and the person I have been in that time. I have felt lost. I have behaved badly, lost interest in most areas of life, lost ambition to pursue any kind of career, and have been unrecognisable at times, even to myself. I have definitely become harder, less kind, less sure of what is right and wrong, with less regard for the rules I have followed since I was young.

You might say all of this was a reaction to being diagnosed. But what if it wasn’t? What if all of this is because I’m not supposed to even be here at this stage?

Perhaps I am lost, simply because there was no path charted for me past some unknown date in 2008.

Perhaps I have outstayed my welcome in this world, and just like the house guest that doesn’t know when to go home, the conversation has lulled, things are strained, and the atmosphere is increasingly tense.

My left hand

2011-05-13T18:00:00.000+01:00

I always fear a progression of my illness. I await it, in fact. You may call me a pessimist, but it’s just been that class of a life thus far.

I am conscious of the fact that I have escaped fairly lightly in dialysis terms. I have had no real, or at least no prolonged loss of appetite, so I don’t bear the...defined bone structure...that marks some of my fellow D patients. I have not had to spend any time in hospital, have managed to keep myself infection-free, and have had no difficulties with the tube inside my tummy.

It’s all going swimmingly, so I am prepared for the inevitable tragic twist that will no doubt hurtle in my direction one fine day soon.

I thought that day had arrived this week, when some odd looking blisters appeared on my left hand. To my increasingly forgetful mind, it seemed these blisters came from nowhere. They began as an itchy patch on the index finger, and painfully bubbled their way above the skin.

Aside from enjoying showing them off, in the same way I spent most of my childhood flaunting cuts and scrapes and scabs, I did genuinely worry that my condition had moved up a gear.

I visualised a gradual spread of Wicked Witch of the West type boils across my body, and wondered whether I should go straight to see the consultant.

Then I remembered an ‘ouch’ moment from last weekend. Getting ready to head to the Races for the day, I was in too much of a rush to give due note to the sensation of pain.

Had I paused, I would have allowed my brain to register the contact between my finger and my hair straighteners.

Panic over, but still. Ouch.

The replacement

2011-05-06T17:24:00.000+01:00

Brendan has been taken away for his service. He needs a little TLC from his makers, a holiday, a few nights away from life-saving.

The lucky bastard. No such break from this toil for me.

His lights stopped working a while back, no doubt from the numerous car journeys I insist on bringing him on.

I don’t believe the dialysis machine was made for traipsing around rural Irish roads in the boot of my stupid car, which has a suspension that buckles at the sight of a pothole.

I now have a substitute in place in my home, and I like him even less. He is older, noisier, more obnoxious in the night-time hours.

He is probably a cantankerous old uncle to Brendan’s youthful boyishness. He has no time for my hasty set-up practices, the shortcuts I increasingly take, my strolling in home at 2am, with a tummy full of toxins mixed with vodka.

I feel the need to treat him as we did sub teachers back in the schooldays. With derision. You’ll note I’ve not even given him a name, and I name most objects in my possession.

But as with Brendan, and as with sub teachers, he will win all of our battles. I will return to him night after night, to curse him, and hate him, but knowing I need him.

Like a good little puppet on a string.

The climb

2011-04-29T18:53:00.000+01:00

It was one anomaly that I felt the need to rectify.

An anomaly that is specific to my place of birth. I have looked upon this mountain all my life, from the first days that I was old enough to observe the world around me from my bedroom window.

Croagh Patrick, that's what they call it. Named after our patron saint, who is said to have climbed it, and spent 40 days and nights at the summit. The nut job.

I have several monkeys on my back these days, lists upon lists in my bedtime head, of things I must accomplish and challenges I must meet. Because, you see, I am aware now of my mortality, and I do not wish to be tortured by any regrets on my death bed.

So the brother and I turned pilgrim on Easter Sunday, and we set off at the pace set by him - the older, the fitter and the healthier of the two of us. It has always been so, on every adventure. He in the lead, me trailing behind.

Going up was tough, but satisfying in that way that a gruelling physical effort can be. The reward came with the view from the top, across Clew Bay on a glorious afternoon.

Coming down was the real challenge. There is the feeling always that if you begin to fall, you won’t be able to stop yourself, and you will roll until something hard breaks your fall and knocks the stuffing out of you.

But then, the idea is that this climb is a penance. It is supposed to punish the spirit in some way, draw out the badness, exorcise the demons that you carry in the form of sins committed, and lies told.

I had 29 years of bad stuff for which I had to repent. Rather efficiently, I sorted the lot of it in the three and a half hours it took to get up and down, and the further two days it took for my legs to stop aching.

There is the satisfaction now that the mountain has been conquered.

I won’t ever climb it again. That was my day. When I get my new kidney, I’ll not be bringing it near any rocks or hard places.

Ignorance and Bliss

2011-04-20T15:44:00.000+01:00

It is only common decency – and a vague fear of the defamation laws – that has kept me from writing frequent notes and thoughts on my medical people up to this point.

But today, there’s the feeling of a rebellion rising. Indulge me, please.

In all honesty, I have been extremely fortunate when it comes to the doctors and nurses who have dealt with my useless body thus far. I have encountered no attitude problems or snobbery with my consultants; only one junior doctor whose hands began to shake once he picked up a needle; no lack of sympathy when it was needed most; and no lectures on my decision to continue drinking Diet Coke, even though it'll kill me, or whatever.

Most I have encountered have a reasonably pleasant and sunny disposition, despite working for the HSE, and in some cases, not getting paid for their lunch hour (that refers to the dialysis nurses).

There remain however some immovable barriers in my relationship with these people. For all the study they have done, all the theses they have collectively compiled, conferences they have attended, and lively after-dinner discussions with colleagues about the merits and disadvantages of dialysis, there is no escaping one true fact.

They still have no idea how I feel.

Ignorant to all that comes with this sorry mess – the drain pain, that oh so unique sensation that comes with having a machine try to suck every last drop of fluid from your tummy; the exhaustion that descends at around this time every day; the reflective pain in the shoulders after a manual; the nausea that swells inside you some mornings when your last fill goes in for the day, and the fluid settles around your insides, making you feel sea sick while on solid ground.

For the medical people, my story, and the story of every one of their patients is the stuff of academia and records and statistics that aid in the accumulation of research grants.

It’s a strange conversation that goes on in the clinical environment, between the medic and the patient. Both experts in their own way, one through familiarity with the textbook cases, the other through the personal experience of their own broken body.

They know so much, but they fail to understand so often.

Like yesterday, when a kind nurse, in the course of a chat, wrecked the sunniest day of the year so far, by telling me the average wait for a kidney transplant in this country is really now 4 years.

Not two years, as I was told when I was listed in August 2009.

She said there is a debate ongoing in the Irish nephrology network at present, as to whether they should break this news to patients, whether it is better for them to have the hope of a shorter waiting time, or whether giving them a false sense of optimism will just lead to depression when the years drag on and they fail to get that call.

She pondered this, as though forgetting that I was one such patient.

And to be honest, I’d rather not have known.

How to solve a problem like Brendan?

2011-04-11T12:55:00.000+01:00

The truth of it comes down to this - I am embarrassed by my illness. I am ashamed of it, and what it means.

Darwin has affected me deeply. Clearly. I regard my useless kidneys as a grand signature of my failure as a human being. The fittest around me are thriving and surviving, and I am a genetically inferior one, not worthy of the human race.

I feel it is a deeply unattractive burden that I now carry, this failure to be healthy, to glow with some radiance of youth and be living recklessly rather than existing cautiously.

It is for all of these reasons that I find it difficult to tell people that I am sick. Because I look relatively normal, and thanks to the advances of cosmetics and almost two years of learning how to cleverly disguise my tummy, I don’t necessarily have to confess anything to anyone.

But then what if there comes along a someone?

My female friends on dialysis share my general reluctance for relationships. It presents too awkward a conversation. It is difficult to plume your feathers and possess the confidence that defines attraction when you are conscious of the disaster zone that occupies your mid-riff.

And yet, and yet, and yet...

The logical ones out there will point to the obvious - that none of us are getting any younger. The medical people tell us we should not put our lives on hold while waiting for transplant. Friends tell us we are wonderful and that we deserve to love and be loved.

Last week, I was faced with all of this in the form of one massive Friday night dilemma. So I minimised. I said “I’m waiting for a transplant, it’s no big deal.” I didn’t mention my dialysis machine, or the fact that I have a tube in my tummy.

If he sticks around, he’ll get to see both. Lucky guy.

Admittedly, for all the worry over the giant elephant on my side of the beer-stained table, there was still the giddy happiness of a first date. Oh, the glorious normality of it all.

Who knows where it will go, and whether it will go.

But I realise there is little hope for any love in my life unless I can find the words to introduce the someone to this complicated world of mine.

On the buses

2011-03-28T17:21:00.000+01:00

In all my years of travelling on Dublin Bus, yesterday was the first time I noted a unicycle in the luggage rack.

Yes, a unicycle.

I surveyed my fellow passengers, trying to work out which of them was the owner of this wonderful vehicle.

I settled on the chap with the long, unkempt hair who had the look of an overgrown adolescent returning from a festival in some muddy field.

My mother would regard anyone with such an appearance as a drop-out. But for all I know, he was returning from a weekend of circus work to reclaim his 9 to 5 capitalist place as a cog in some wheel this Monday morning.

In any case, the nonchalance with which he picked up his unicycle and stepped off the bus, as if it were the most normal thing in the world, made me smile.

There and then I decided that in the future, after transplant, I will always carry around some interesting item with me each day.

A musical instrument, or a set of juggling clubs, or a lacrosse stick.

And I shall wear a flower in my lapel, or a flower in my hair.

Life will be much more colourful then.

Fleeing the killer in the sky

2011-03-22T15:16:00.000Z

Now there comes again the first stirrings of sunnier days ahead. Summer will not leave us waiting much longer, and already, the temperature is up, the wind is taking it a little easier, in truth it is more of a friendly breeze anyway these days.

Sunshine makes me happy. Waking up to it instantly promises something of a better day than might be delivered in cloud or rain. I feel that instant familiar urgency of the eternal child that makes you want to pull your clothes on and race out into anywhere that is outside, terrified you will miss one minute of it.

It seems impossible that I am sick when the sun is shining. That anything could be wrong on a day like this is hard to believe, and I do find it more difficult to take my illness seriously when the weather calls for ice-cream and beer gardens.

The sad truth however is that my relationship with the sun is over. Once transplanted, the rays it emits will be my nemeses, as one of the unfortunate upshots of having a new kidney is that you are left extremely prone to skin cancer when on anti-rejection drugs.

Already, I have been advised to wear sunscreen every day for six months of the year, from March to September, even while on dialysis, and I was told in Beaumont Hospital that there is a “100% chance” I will develop skin cancer if I do not take at least three leaflets' worth of precautions in future.

I did not point out to the highly educated doctor that when the odds reach 100%, you are looking at something of a certainty rather than a chance.

I wonder what it was like to be part of one of those fearless generations who lived at a time when we didn’t know the sun could kill you.

I look at my parents. My mother, blessed with dark skin, has never worn sunscreen in her life, she boasts a tan for months at a time, a shade of healthy bronze which she gets from nothing more than a lick of the sun.

My father was a bit more careful. One favourite image that remains with me is that of him walking through the gates, after a day spent saving hay, a straw hat shielding him from more freckles.

Ah yes, ‘twas not from the wind I took my own fair skin.

They have told me I will never again sunbathe, that even ambling in a hint of a heatwave, weaving my way in and out of shade, will call for long sleeves, a wide-brimmed hat, Factor 50 on any inch of exposed skin.

It’s not that I ever got a tan. The sun largely ignored me, but that pleasure of being blanketed by natural heat is a therapy and a privilege that I will miss.

It’s one of the few glories open to everyone, the poor and the rich alike. It costs nothing to lounge under some splendour and soak up the Vitamin D and the happiness that a cloudless blue sky can invoke.

It costs nothing, but it could cost me my life. In some ways, for all the limitations that are placed on me through this illness, taking away my sunshine is the worst.

And the winner is...

2011-03-21T16:16:00.000Z

Not me.

Robbed, I was.

They gave the prize to some girl who blogs wonderfully and has done so for years, and who has in recent times, climbed Mount Everest.

I wish I was making that last bit up, but I'm not.

Fortunately, I had rehearsed my Oscar nominee expression of graciousness in defeat in the run-up to the Awards ceremony.

It was ruined somewhat by having to stick my fist in my mouth to stop myself crying out that I climb my own personal mountain each and every day, just staying alive.

I'm nothing if not dramatic. But causing a scene would not have been appropriate, just like throwing my tennis racket at my opponent was never a measured response to defeat on the courts.

As I have admitted to you all before, I do transform into a monster at the mere hint of a competition, but in all seriousness, I didn’t so much mind losing this one.

Annie writes with an effortlessness that I greatly admire, and she also takes the kind of photos that make people and places of this earth seem extraordinary and beautiful. You should read her stuff.

Apart from the Awards, I was also present in Croke Park yesterday to see Mayo lose. One of these days, I will be part of the optimistic contingent there to see them win, and we will spill out onto Jones’ Road, jubilant and giddy, and singing songs of the green and red that have not been heard on the Northside of Dublin since 1951.

It was a weekend that was far too hectic. The sickness is on me today, as a result, and my eyes are not responding to basic commands.

There is but one word for me in such a state, but it is a funny one, which eases my burden somewhat.

Banjaxed.

Pop Idle

2011-03-17T21:19:00.000Z

In the course of the occasional day of work that I manage, I take pleasure in talking to people who know things. Smart people, who answer my calls in offices that are cluttered with books and theses and unfinished papers, whose heads are filled with thoughts that could change the world, or at least make it better.

I interview these people, take shorthand notes, and then help in the process of media that will impart this knowledge to the masses.

(Some call this journalism)

This week, I spoke with an academic who has studied the effects of unemployment, psychologically as well as socially.

He talked me through Year One. How the initial stress and nail-biting over bills and mortgages fades into feelings of depression, of failure. The gradual and growing feeling of becoming invisible.

The back-end of Year One is a watershed, for if Year One becomes Year Two, then the unemployed person is statistically unlikely to ever work again. They are then classed as long-term unemployed. Bye-bye fulfilment, farewell dignity, rest in peace all the hopes and dreams of that fragile human being.

It is not that they are suddenly useless. No, it is because over the months of nothingness, they become the disappointed parent to their own situation; they fill their heads and their sleepless nights with criticisms of how they have let themselves and their families down.

Their confidence is an early casualty, they become depressed, they start staying up late and losing the best part of the day to a lethargy that doesn't lift until noon. They falter their way through a calendar's worth of groundhog days, until they sink into dependency, and then, they stay there.

This conversation was of an enormous amount of interest to me, mostly because the feelings described were familiar.

I asked him to differentiate between levels of damage: the impact of being out of work as a result of this blasted recession VS the impact of not working because you are sick.

He told me all his hefty books would say there should be a world of difference. Being able-bodied and idle should have worse consequences than being unwell and unproductive.

On those weeks when I’m not working, I panic and I give out to myself. I feel like I am wasting my time and wasting what talents I have, though for 29 years, I have struggled to really pinpoint what those talents are.

I can’t give myself a break, and I can’t forgive myself for countless days of contributing nothing, achieving nothing, earning nothing.

The funny thing is, those who know me have made a running joke of my laid-back nature, and my default setting that has always been set to a preference of snoozing or lounging.

It is true my work ethic has improved greatly with illness.

But they paved Paradise and put up a parking lot, and you don’t know what you got, nor what you can be, until it’s gone.

Our Anniversary

2011-03-13T20:16:00.000Z

It was exactly one year ago today that I wrote my first blog post.

I don’t know what exactly I was hoping for through joining this online community of those who write and those who read and the small percentage who comment, but I have been thinking about it in the last few days.

Throughout my teenage and college years, and on into my early twenties, I kept a journal.

“Dear Felicity...”

Each entry was addressed to the same fictitious girl, the girl who embodied everything I wished I could be. I imagined her as beautiful and wise and secure in herself, never awkward, never doubting that she was anything less than flawed but perfect.

I found a number of my journals during a clear-out of my bedroom over the lazy days of Christmas, and happily threw away a few hours, reading back over the pages. I was shocked to find how typically girlie I was in every respect. I laughed at the dramatics, the nights out, the rows, the meltdowns, the declarations of love and hate and life as I knew it being over for the third time since we came back to school from Easter holidays. It amazed me how obsessed I was with boys I thought I was in love with, back when I knew nothing of love at all.

A by-product of my diagnosis three years ago was that I stopped writing my journal. It was one of many routines that I abandoned instantly upon discovering I was sick. The written accounts were no longer required or desired, because I suddenly found myself in a life I didn’t want to lead.

I have a habit of putting down a book if it doesn’t grab me in the first 40 pages, and it was this attitude that I adopted to my journal, circa March 2008. Why continue on with a story that is not granting you any pleasure, even if you are the one writing it rather than one of millions reading it. Same rules apply.

I can of course appreciate now that this was part of my trudge through denial at a time when it felt like every expectation of life I had nourished had been snatched from me.

Starting this blog marked my move towards total acceptance. I know now that this is my reality, this is the life I will lead, and taking ownership of it is all I can do. Finding happiness in it and making it work is my only option; learning to love this life must be my objective; and looking back on all this in years to come will be just as important to my story as reading about that holiday, that victory, that night at that party with that guy.

Limbo has become my shelter from the storm. It is the space I use to feel sad, to feel angry, to express emotions that do not come easily to me in conversation, even with those closest to me. I leave my dramatics on the page here and continue on with the rest of my day, just as I have always done.

So thank you to everyone and anyone who has passed through here in the last twelve months, to all those who have read a little, commented occasionally or a lot, or never commented at all, but taken the time to read a little piece of me.

Let’s hope the next year brings an end to dialysis, and heralds the entrance of the curiosities of a kidney transplant.

PS I have been named as a finalist in the Best Personal Blog category of the Irish Blog Awards 2011. I do not expect to win, but I am most humbled at having made it to the last five. Thank you to those who nominated me – I do not feel worthy. Not one little bit.

Programme for Government

2011-03-07T14:07:00.000Z

I know we are expected to be grateful. At least the issue of Organ Donation got a mention down there on Page 38, but regretfully, it is in the least helpful way possible.

Our new government promises to legislate for an Opt-Out system. In the near future, it will be presumed that every person who dies in this country is a consenting organ donor, unless they have actually registered themselves prior to death as being unwilling to donate.

This worries me on several levels. It worries me that our new government did not heed the advice of bodies such as the Irish Kidney Association and others, who pointed out the flaws with this policy.

The statistics show that in other countries, where Opt-Out has been introduced, no discernible difference was made to the rate of transplants.

This has been flagged to all parties in Leinster House on many occasions. Those healthy ones who lobby on behalf of people like me told them all – Opt-Out sounds like a great plan, but it doesn’t work. And it certainly doesn’t work as a standalone piece of legislation.

Yet, they carried on. Now it is enshrined in the blueprint for the next five years of governance.

To put it in context, this would be like addressing the need for increased revenue for the Exchequer by introducing a tax on spaceships, rather than on property. It achieves nothing.

It will obviously increase the number of potential donors – but potential is worthless unless you have the means to transform it into the actual. It is pointless to have potential donors when the environment within which our health service operates is still hopelessly ill-equipped for the harvesting and transplanting of organs.

What we needed in this Programme for Government was a pledge to create a National Transplant Authority; a commitment to install a Donor Coordinator in each of our hospitals around the country.

We don’t need legislation for potential – we need progress towards actual results. We need one staff member in each Intensive Care Unit whose job it is to identify donors, speak with their families and set things in motion. It is that simple.

This is a clumsy move by the new government. It will result in more pressure on ICU nurses, more anger at front-line staff when transplant figures come out and they are dismal, and the media ask the question of why this is so when we now have an Opt-Out system in place.

It will allow the Health Minister of the time to shimmy out of any accusations laid against him, shifting the blame to over-worked and underpaid staff in badly resourced hospitals, which will suffer yet more cuts under this awkward coalition of the right and the left.

Perhaps that was the intention of this government, and if that is the cynical first step of their journey in power, it is of immense concern.

Mayo, God Help Us

2011-02-28T15:10:00.002Z

It always strikes me as typical of the man he was, the days my dad chooses to visit me.

They are often moments illuminated by limelight, as he was one of those who was drawn to an audience. I sometimes wonder if this was because he was an only child, and because he was entirely alone in the world at the age of 15, by which time both his parents had died. Maybe his showmanship was born of nothing more than loneliness; the strange sense of comfort that he drew from being part of a crowd; the sense of family that he found as a member of a committee, an association, a staff.

He comes to me on match days, when I remember Sundays in September from my childhood; the odd occasion back then when Mayo would make it to Croke Park. He would leave at dawn, to get the train. Arrive back to us late, waking us up with some little presents, with stories of who he met, what Dublin was like and his analysis of where the match went wrong.

Like many of his generation, he regarded the wearing of a GAA jersey off the playing pitch, and for the purposes of showing support, as a form of hooliganism. An outing to Dublin - be it for a medical appointment, a meeting or a match - required the wearing of a suit and the carrying of an overcoat, for as he told us often, it’s a wise man that carries his coat on a fine day.

He comes to me too at election time. He brought me to my first election count in the Traveller’s Friend Hotel when I was 4 years old. It is because of him that I actually understand the PR-STV system, that I revel in talk of transfers, and the excitement of the day when democracy delivers us the process by which we declare some victors, many others losers.

He loved the circus that was created around politics, but there was also a deep desire in him to see the west of the country and the farming community properly represented.

I remember hearing some interviews he did on local radio replayed in the days after he died. Speaking on the level of knowledge that most Dublin politicians had on matters agricultural, I believe his response was "they wouldn't know the front of a sheep from the back of an ass."

Whatever you may think of Enda Kenny, do not underestimate the difference it will make to the county to now boast that the Taoiseach is from down the road in Castlebar.

It's not as good as an All-Ireland, but it is something, it promises much, and in terms of euphoria, weeping old-timers and bonfires around the parish pump, it has already delivered in spades.

Does this make me a Twit?

2011-02-21T17:57:00.000Z

I have joined the twitter.

I'm not entirely sure why, but I blame boredom and an increasing reliance on social networking to feed my need for constant attention.

I also thought it would be the handiest means by which I could inform people of major events - such as, oh, I don't know, maybe a certain call from a certain hospital for a certain major surgery.

If I was really into the twitter, I'd probably call it a 'twansplant'.

If you click on the button over there on the right, you'll see my tweets. As far as I know, you can look at them without signing up to the twitter yourself - if you want to be able to reply to a tweet however, then you have to have an account.

Thank you.

My review of a cinema outing

2011-02-18T16:12:00.001Z

My friend suggested we go see ‘Never Let Me Go’ last weekend.

We had both loved the book, grim and unsettling, but brilliant for its writing and its sinister prescription for solving organ failure.

I should have known. I should have realised that Hollywood would take the detached narrative of the book, condense it into a chorus line of sadness and present it in feature film length, until it extracted tears.

At least 15 people walked out during the viewing I went to in Cineworld the other night. They were mostly couples, who mistakenly thought this would be some kind of heart-warming love story that would aid their efforts at pretending they were happy on Valentine’s Day.

It’s no such thing. It brings us back to the time when transplantation made its appearance on the medical stage. A breakthrough, no less. The response was to spawn a new population of humans, created and raised for the sole purpose of providing organs to those who are sick. It was accepted practice in this make-believe world, enshrined in government policy, without the conscience of a needy society suffering even a sleepless night over it.

When these innocent children have grown up and donated all they can, they don’t die. In their sad language where life is not a series of experiences, but a process, they “complete”.

The man behind the story, Kazuo Ishiguro, was born in Japan, a country where organ donation was outlawed entirely up until the last decade or so. Living in such a place provided the debate and the twisted fodder for such gross imaginings.

So many scenes moved my cold heart. The realisation of Kathy at the end that the lives of donors are not so different to the lives of those whom they save; that they all go through something they don’t really understand, and they all die in the end.

The dark moment where Tommy, realising there is no hope for him, stands on a lonely road and screams at the world.

Seeing Keira Knightey, her hands and arms bruised, much like my own after a stay in hospital or increasingly after routine blood tests have punctured my tired veins at various points, needles being moved around under the skin to try and coax some blood out.

It is on my mind more and more that I am going to be sick forever. Even with transplant, I will be tested constantly, on medication always, worried and worried and worried at every bug, every high temperature, every drop or gain in weight.

It exhausts me to think of the road ahead, like considering a long haul journey with stopovers in unpleasant places.

On the upside, this was a role Knightley was born to play. It suited her waif-like figure to fade away and flatline on screen.

I was not the better for having seen it. I cried in there, cried in the bathroom afterwards, and sat in a daze on the bus home.

The only film to have drawn such emotion from me was E.T. which I saw on the telly when I was 8 years old. I still don't understand why he had to go home.

Happy Day

2011-02-10T16:17:00.000Z

There were three wishes made.

The gathering last week was to celebrate the engagement of him to her, and it coincided with a birthday that he wanted to keep quiet.

The scene at the dinner table - three opposite three. On this side, in by the fire and away from the cold, there sat the dialysis crew. Me, him and another.

Across the way, his fiancée, still getting used to her title, and two good friends down through years of the happy and the sad.

The cake was brought out and the song sung badly. He blew out the candle, for it was his special night, but being the way he is, he thought of us too.

The tea light on the table was used to set the wick aglow again, and it was passed along.

His fellow hostages of the same misfortune duly took their moment, registered their wish, and exhaled a laboured breath from bodies broken.

Bad luck to tell anybody what you wished for, but easy to know that on this night, with these three, the same request was made in triplicate.

No more thought was given to it. Until last night, when he got the call.

He has just come out of surgery. Transplant done. His wish fulfilled.

State of the Nation Address

2011-02-09T22:33:00.011Z

In my annual effort at raising awareness of organ donation, I made an appearance on the Tubridy Show on 2FM yesterday.

I think it went well. The researcher on the show woke me when she rang to ask if I would come on. I think this made for better radio, as I am an angry beast when roused from my sleep in any event, not to mind when I am roused for the purpose of talking about dialysis

Go here if you want to download the podcast or just play the interview on your computer thing.

Much obliged.

Betrayed by this country

2011-02-03T12:58:00.003Z

Please read this article and await my wrath:

I cannot believe this.

No. It's truer to say I wish I didn't know this.

Of all the fucking irresponsible behaviours of the HSE. In the past, they have displayed gross incompetence, but this? This is just carelessness, this says they just can't be bothered.

Making an effort to procure organs should be a requirement of their work. When somebody collides with their fate in tragic circumstances and is brought to hospital; once the medics have fought like hell to save their lives, once death is declared, for those doctors and nurses the next thought should be contacting a transplant coordinator.

Somebody needs to have that conversation with a bereaved family, to find them in their darkest hour, and in the most gentle and hushed tones try to show them this little light that is embodied in me and hundreds like me.

To explain to them that there are hundreds of people waiting for a special call, and that through this devastating upheaval in their family, they today find themselves with the power to save a number of lives.

I maintain enough faith in humanity to believe that the reaction from a good percentage of those bereaved would be positive, that they would see an opportunity to salvage some good from this tragedy.

The figures makes me feel stupid. Here we all are, going around trying to encourage people to carry organ donor cards. Ha. Why should we bother? It's a waste of an effort, a waste of precious energy that I don't have in good supply.

Evidently there is no interest in the hospitals in helping us out. We can create all the awareness in the world, but we can't start chasing ambulances.

It sickens me to think of all the organs that have gone. Think of it like this, reader - think if you were stranded in a desert and all the water bottles had been buried on you. Think if you were in desperate need of food and all around you they were setting fire to hamburgers.

If I feel a desperation over it, how must the others feel? Those who are waiting for hearts or lungs or livers, who have an end date that beckons to them, without a treatment like dialysis to sustain their sick bodies. For them, this recklessness is the worst kind of betrayal.

Are our lives worth so little? I am 28 years old. I am educated and I want to be something, to contribute something, but my society has evidently decided I am not worth the bother.

When I was listed for transplant in August 2009, they told me I would probably wait two years for a kidney. Suddenly that seems so optimistic.

Fuck this.

Woeful Sunday

2011-01-23T20:12:00.000Z

I had two drinks last night.

Actually, I’m not sure I even finished the second one.

Result?

I awoke at midday feeling like the night had been passed somewhere south of Nevada, surrounded by cacti and on that side of the Mojave that is short on oases.

Mouth parched, eyes prickly and reluctant to address the cruelty of daylight.

Some air, I thought. That will provide the antidote that I can no longer seek in the beauty of painkillers and the power of limitless fluids.

Oh, what a mistake. The motion of constant movement, the scents of hedge-rows and car fumes and unhygenic dogs, all serving to make my delicate stomach even more uneasy.

The key to not puking is distraction. I considered which was the more acceptable – to throw up on the sidewalk and make it the city’s problem, or throw up in an individual’s garden/driveway, and risk being impolite to that one householder.

I'm still torn on that one.

I made it around the block to the shop. Solid food was required, but oh mercy, the smells from the deli counter. I took three steps back, and shouted out my order from a distance.

Deli girl gave the most unsubtle of eyeball rolls to her colleague. She should have been thanking me for saving her a lunch break of mopping up sick from the tiles around her station.

Holding the food at arm’s length, I managed the remainder of the journey home and forced the overdue soakage down.

It solved the queasiness.

I kept my eyes open long enough to watch the Greens’ press conference and to experience an embarrassing level of excitement at the thought of an imminent general election.

‘Tis no wonder the teachers called me "a bad mixer" as a child.

Back in bed at 4pm for a nap. Up again at 4.10pm, imagining even more dastardly methods by which I could exterminate the childer-beasts in my estate. We were never that loud when we were small. Barney has a lot to answer for. Drawing his dinosaur distinction between indoor and outdoor voices.

I can’t even class this as a hangover. To do so would be a gross insult to alcohol and would require the invention of a new category of drinker, further down the scale from the much-maligned ‘lightweight’.

Maybe they’d call it a hangunder.

Maybe they’d just call it pathetic.

On feeling poorly

2011-01-16T21:26:00.000Z

It has not been my finest hour. These past few weeks I have been reckless, sleeping on the job - the job being dialysis and my duty being to watch my step each and every day because the divide between my life and death is not half wide enough.

The warning signs were trying to catch my attention, but I just wandered along, like one of Enid Blyton’s more challenged characters heading for a picnic in a minefield on what promises to be a thundery day.

My weight was dropping. Somewhere between the turkey dinner of last month and the world returning to work, I shed about five pounds. Another week on, and my scales was registering the lowest weight I have been in my adult life.

There were headaches too. They could have been put down to the remnants of a cold that would not go away, but the blood pressure machine poked a gaping hole in that theory. Last weekend, it hit 160/110.

My heart rate joined in. It went up to 115. Beating almost twice every second, the same way it would if I were distressed or terrified.

Not easy to sleep when your body is gone into fight or flight mode. So exhaustion also made a late entrance.

But all of these things can be ignored if you put the mind over the matter. Which is what I did, because no matter what else was going on, I simply had to make it into the place that offered paid employment every day.

When the work is casual and your bank balance is as limp as mine, you can no longer entertain sickness. You act at being able and willing and twice as enthusiastic as the person beside you.

But then the throwing up started and my vision became blurry and I started to feel a little shaky in the shower or when I moved from sitting to standing or even when I was just walking around the office.

I was having to get up half an hour earlier than necessary for work because I would need to set aside time for vomiting. That’s just not practical.

After several phone calls, progress of all sorts was made. I broke up with my consultant. The one who delivered the news of my kidney disease almost three years ago, way over there in the city that God chose as the location to test me.

It was all “it’s not you, it’s me...our long distance relationship just isn’t working...I need someone who can be there for me”.

He took it well in fairness. Referred me on to the woman who will bring me the rest of the way, to transplant and the new life beyond. Having heard my symptoms, she agreed to clear a lunchtime to see me. The tests were done and she had three guesses about what was wrong.

I like this woman. I like her proactive approach. She made changes to medication, changes to my dialysis regime. She took me off my energy injection but I will forgive her for this in time.

The worst of the symptoms are gone. My weight is slowly creeping back up and my face is filling out again. I am back to my usual throwing up routine.

I must not take my eye off the road ahead again. It’s that kind of recklessness that sank the Titanic. And I can’t swim.

At a Glance

2011-01-04T16:49:00.000Z

The story took but a few seconds. It was there, waiting to be told, in my rearview mirror.

The glance behind as I leave is a given. Perhaps I do it out of superstition. Perhaps I do it...just in case. I did it on Sunday for all the usual reasons and then some, probably borne out the sentimentality of the season.

In those moments, I noted the changes. A decade’s worth of them. Changes which I have not perceived when looking at her full on, but which could not be denied from the angle that allows for looking back over your shoulder. Slower on her feet as she shuffles back into the yard, her shoulders struggling for posture under a head full of worries that I know are all centred on my situation.

I felt the reversal of our roles keenly in the days of the Christmas just past. She helping me, rather than the other way around. We had enjoyed a fleeting period when I held the strength, the ability and the energy – when my youth relieved her from a lifetime of toil.

Now we have upset the natural order. She asks nothing of me. She implores me to rest, to stay in from the cold, to leave any lifting of my machine or of shopping bags to my brother. I woke each morning to the sound of her taking out ashes, carrying in fuel for the fires and preparing food - chores that should fall to me, while she sleeps and dreams to an hour befitting of a grandmother.

She doesn’t complain. She carries me, just as she has done since the day she brought me home from the hospital. The baby girl she always wanted.

And so that was Christmas

2010-12-29T23:01:00.001Z

The reverse psychology performed by the weather was all that was required to put paid to my anti-buzz. It was rolled out in the following steps:

1. At the start of Christmas week, plant seed of foreboding that the roads will be too bad for travel

2. Capitalise on fear from Step 1 (best achieved by making car slide on short journeys)

3. Add some more snow

4. Place weather at the top of every news bulletin every day

5. Close all airports

6. Hype up warnings to motorists of “treacherous” conditions

7. Repeat the word “treacherous” again. And again. And again.

By the time we got to the eve of Christmas Eve, I was suitably terrified that I would be stranded in Dublin. There were flashes presented by the Ghost of Christmas Short-Term Future – Regina alone in her apartment with a pizza for dinner and the warring factions next door for company on the 25th.

It did the trick. Dragged me out of the doldrums into which I had readily slumped for the early weeks of December. It made me determined and fearless of the nasty roads, and most importantly it restored some of the giddy spirit that I have long since enjoyed at this wonderful time of the year.

And so the five-hour car journey was undertaken with the suitable attitude. Slow and steady. It will be worth it. Just keep flicking radio stations to find Driving Home for Christmas. No matter what, I need to get home. It has been a rough few weeks at the end of a rough year, and what else is there to do now, but run away home to mammy.

The happiness on arrival was off the scale and it lasted through to Christmas Day, despite the problems brought on by the freezing conditions. No water. No central heating. But look outside. How beautiful is that view, dazzling the eyes, replacing the forty shades I have looked upon since forever with one splash of heaven’s own brand of brilliant white.

Admittedly, the lack of water did create some difficulty for my hand-washing. But that’s the nice thing about coming home. There are people here to help, perched on either side of the sink, throwing bottled water over my Hibiscrubbed hands.

Everything on Christmas Day was as it has been for several, drama-free years now. There was the new baby in the family to behold, but aside from that, there was O Holy Night at Mass, Mid West Radio in the background as dinner was prepared and my mother reciting her same seventeen-verse poems about various emigrants who only returned home to Ireland after their own mother had died.

Now there comes a New Year. I have a paralysing fear of the song Auld Lang Syne and must thus avoid any gatherings on New Year’s Eve. The lyrics make me feel intensely suicidal.

But the promise that Saturday brings; the shiny, new feel of the first day of the first month of 2011; the slate wiped clean. That makes me feel happy. It also makes me feel hopeful that there will be better times ahead.

Enough of 2010 now.

Good riddance to it.

The War Next Door

2010-12-20T17:55:00.001Z

There are nights when I can’t sleep. Too many in the last while, but that is down to other matters outside of what I like to call “the science bit” of my life.

The insomniac dialysis patient has few options for the slow hours that follow after midnight. You can’t go out for some air or wander about the house very much, because you are attached to your machine, and for those eight hours of treatment, your world is bound and limited to however far your patient line can stretch.

One can only spend so much time reading, so when any other night-time distraction comes along, it is a blessing. Like last night, when the couple next door got into a massive fight.

I have been following the difficult relationship of this couple for the last year or so, because everyone loves to eavesdrop, especially on a good row. Once the shouting starts, I drag my pillow into the hall, sit down and listen to the sad song of their broken strings.

It surprises me that they are still together. While I would like to think it is because they are very much in love, I fear they are one of those twosomes who are a couple of habit rather than by any design of Cupid’s arrow.

The woman in this couple fascinates me. She has a voice that sounds like it was honed since the day of her birth for extensive nagging. It is the kind of voice that scratches at you, that travels through the wall that separates our living spaces with a clarity that confounds me. Having never actually seen her, I admit in my mind, she has manifest herself in the likeness of the Wicked Witch of the West.

For many months, the voice and the image automatically had me taking the side of her boyfriend, he being in possession of a more dulcet intonation.

But recently, I have developed some sympathy for the girl. She is plagued by that brand of insecurity that hampers the relationships of many females in an era when it’s becoming more and more difficult to look perfect and be perfect. She accuses him of flirting with other girls and of not finding her attractive anymore.

She has made the mistake of believing that by stating her fears, she will be gifted the reassurance she craves, and has also made the mistake of believing she can make this man love her in the way she wants and needs to be loved.

This saddens me. While he may accede to her demands that he call her more often, or check with her before he makes plans, or include her in his view of the future, I always wonder how she can count these small steps as victories. To nag him into submission; to berate him until he agrees and responds. Is that any achievement at all?

But don’t feel too sorry for this guy. He too is guilty. He is a cocky man, sure of himself and of his hold on this woman, and he has his own demands. He speaks about the way she dresses - that she doesn’t make enough of an effort. He has even in the past criticised her for not shaving her legs.

He is one of those guys who is not grateful for the love in his life, but who concentrates on the dressings and accessories. He is arrogant enough to spend his time commenting on how well-kept and socially acceptable his partner is, rather than appreciating her, protecting her and being proud of her. Too caught up with making comparisons and casting insults, he does not deserve to have a hand to hold.

It is difficult to see a future for my couple next door. But what do I know? I’m just the single girl on the other side of the wall, attached to a machine to stay alive and passing time until I grow tired enough for sleep and escape from another day.

Letter to Santa

2010-12-11T17:29:00.000Z

Santa Claus,
The North Pole.

Dear Santa,

I haven’t written you for many years, because somewhere between James Bond Junior and Sweet Valley High, I stopped believing.

I remember the first Christmas I didn’t write and you didn’t stop by. In my mind’s retrospective eye, that year, Christmas was toned down from the most beautiful and bright of colours to an unwelcome grey, and smothered with a feeling of being hard done by.

Since then, there have been good and bad years. I re-adjusted my expectations to the more adult setting and made do with versions of cheer, no longer in the form of the imaginings of reindeer on the roof, but in the form of nights out and good food and proper ‘Charlie & the Chocolate Factory’ on the television.

This year, I am allowing myself the indulgence of childhood hope. I want to believe in something again, and so I am starting with you. Of all the things I have believed in throughout my life – the love of my family, my own personal strength and every storyline in Home & Away – nothing ever brought me so much joy as my belief in you.

I am not expecting you to leave anything under the tree for me on Christmas Eve - you have enough little people to tend to in the world. But I am asking that sometime between now and close of business on Christmas Day, you could send me some of your magic for the year ahead.

I know you’re more in the business of making toys and that I should probably be forwarding this to my fairy godmother, but she abandoned me a while back. Between you and me, she wasn’t up to much anyway.

They say it is important to look forward and concentrate on the future, but I admit my view of the road ahead is unimpressive and pitted with what looks sadly like more of the same. I know this is because in my heart I cannot accept I am going into another new year, still on dialysis.

This letter is about hope though, and I have to hang on to some optimism that the year 2011 will bring me the healing I require, some direction in my life again and some purpose to my days, which are currently silent and empty.

Any one of those three would be wonderful – all three would count in my eyes, and possibly in the eyes of the Vatican, as a miracle.

When I was young, I used to try to out-do my brother in the number of 'pleases' I could put at the end of my letter to you. Thankfully, I now have more words in my vocabulary with which to appeal to your kind nature.

So I will say, I would be most grateful if you could consider my request and make me a believer once again.

Please, please, please, please, please, please, please, please, please, please x one hundred million trillion, to infinity and beyond...

Yours,
Regina Hennelly
Aged 28.

The joys of this upheaval

2010-12-06T19:17:00.000Z

There is only one word to describe the gait I have adopted over the past week or so, and it is the word feeble.

I have been moving across footpaths with the velocity of a tortoise on his way home from a heavy night’s drinking. Inching forward, eyes fixed no more than one metre ahead, speed reduced to about a quarter of my normal pace. It has made the darkened days seem longer, but only because each polar expedition to the shop or to the bus stop has seemed epic.

Largely, it has been fun. I love snow and I love anything that interrupts the routine of huge sections of the populace. In a fractured society where I know nothing of my neighbours, it is nice to occasionally share something, even hardship.

I had my Elephant Island moment last Wednesday, when after standing on O’Connell Street for half an hour, I accepted there would be no bus to transport me back to Suburbia Land. I set out on foot with my friend. She was the Shackleton to my Tom Crean. Only TC didn't get pegged with snowballs by gurriers on Clanbrassil Street.

There has been the joy of not having to go near my stupid car for a whole week. My car has always been stupid, since the stupid manufacturers first gave it a stupid engine that requires me to put oil in it before each and every long journey I undertake.

I only keep the stupid car because public transport would not entertain me these days. One cannot travel light when you need to bring a dialysis machine and lots of fluid everywhere you go. A camel would be my only alternative means of transport and I cannot fit one of those in my apartment.

The car will be the first thing to go after transplant. Actually the second. After Brendan. Maybe I’ll put Brendan in the stupid car and push them both off the edge of that same cliff where Thelma & Louise met their doom.

The upset of routine and the ignoring of the car have been welcome, but
the difficulty with moving on foot has been most annoying. I am terrified I will break something. The loss of even a baby finger for a few weeks would be a disaster. It would make dialysis rather impossible. Three-minute handwashes would be difficult with a big plaster on my hand. A big plaster which in lay-dialysis-man’s terms is more like a big hive of potential bacteria that will land me with a peritonitis and a whole lot of pain.

Breaking a leg/foot/toe would not impact on the handwashing, but unless I could craft a way to carry the 5 ltr bags of Physioneal fluid in my teeth while hobbling on crutches from the spare room to where Brendan resides, it would also leave me in a pickle.

So I’ve been shuffling along with the other old dears in my neighbourhood. Cautious to an embarrassing level, the subject of ridicule by the childer-beasts in my estate and even by the reckless adults who chose to give those little brats life.

The snow is melting now, but as anyone from the country with country parents knows, that’s not where the real danger lies.

The two most terrifying words in the lexicon of potential threats in this scary and violent world. No, not "nuclear attack" or "terminal cancer."

You know what I'm talking about.

"Black ice."

It's beginning to look a lot like bah humbug

2010-11-30T18:05:00.000Z

Words escaped me for the last week or so. There was just nothing more to say. Or so it felt.

It’s the least wonderful time of the year for many pursuits. Dialysis is top of my list, followed closely by wallowing in what went wrong and how I ended up here with nobody to talk to.

Christmas is a big deal to me. I missed out on too many happy holidays in my teenage years, so in adulthood I have tried to make up for the magic that was lost. I drive festive tackiness in the family home. I make people wear party hats and I over-decorate the tree and I insist on any squabbles being placed to one side for that day.

My situation last Christmas did not easily allow for the creation of happiness. Affairs were topsy-turvy and unclear and unsettled. And the ‘good room’ in the family home was cluttered with dialysis fluid to get me through the holiday, not serving its usual purpose as being the space into which Christmas visitors should be ushered.

This Christmas feels no different and will be no different. In fact it feels already as though it will be worse.

But I know I should update you on what has been happening. Last week was my usual week of usual tests, but not with the usual doctor.

This woman asked different questions, the first of which was "any symptoms"?

"Why yes, doctor, I've notice there's a machine attached to me for 8 hours every day".

She placed much more emphasis on the length of time I have been waiting for transplant and asked the nurse to fetch figures on my "matchability" (it's 93%).

All keyed up from the news during the week of a living donation by keyhole surgery at Beaumont, she asked if I wouldn’t try and look into finding a donor from my family. She enforced her argument by telling me it would really be better for my general health to get off dialysis as quickly as possible.

Little revelation for me there.

My bloods were all fine anyway, thus re-affirming my title of Most Boring Dialysis Patient in the World Ever.

Last week also brought me to the Cardiology unit for a heart echo - something required by Beaumont to ensure my name remains on the transplant list for another year.

I hate heart echoes more than any other test. Aside from the embarrassment of it, there is the sound of my heartbeat to contend with, amplified and in surround sound for those twenty minutes or so.

It may seem odd that I hate hearing my pulse. You’d think I would have developed some grá for it with sickness. Hating it seems akin to a person in danger of going blind having a severe dislike of opening their eyes in the morning and seeing the sun.

I'm weird.

But I did look at the screen to see my heart thumping away from every angle, reassured to find that despite everything, it still beats.

Bruised surely, but not broken.

Onwards now.

In favour of omens

2010-11-14T23:11:00.000Z

I am not one for taking an event or a twist of circumstance and trying to massage it into ‘an omen’. It seems a very imprecise science, based more of the viewpoint of the fatalist who is trying to categorise it than an actual message from the universe.

But occasionally, even I have those moments where in my limited teenage brain vocabulary I think “that’s mad”.

Today, I happened upon a chance meeting that got me hoping that Fortuna was finally making her way down my aisle. I met the man who will save my life.

I do some casual work from time to time on a particular radio show and was called in for this morning. Initial grumbling about the early start on a morning cloaked in the meddling work of Mr Jack Frost quickly lifted when I discovered one of the guests on the show was David Hickey.

I have mentioned his name before, but as a reminder, he is head of the Kidney Transplant unit at Beaumont Hospital (he’s also a bit of maverick when it comes to many of his views and a great speaker – hence the occasional media appearances in between episodes in scrubs).

I made it my business to say hello to him and explain we had met before in an office in Beaumont when he was considering whether I was suitable to be listed for transplant.

He didn’t remember me. Of course not. I am one of many failed bodies who pass through his unit, seeking alms in the form of donated organs.

But he was gracious and interested in hearing I was on dialysis, and I think I may have detected a hint of surprise in his voice when he heard how long I have been waiting for the call.

Our encounter was brief, conversation short between journeys to and from studio and interrupted by other people caught up in the immediacy of the radio broadcast and not realising that our chat was about my life and death and his means of bouying the former and preventing the latter.

How odd that this man who flitted in and out of my Sunday morning is the surgeon who will most probably give me my life back at some appointed hour in the future that is as yet unknown.

I’m choosing to believe this is a good omen.

There is that old joke between friends about hoping to meet again soon under different circumstances, but on bidding farewell to Mr Hickey today, it seemed appropriate to throw out that punchline and mean it in the best possible sense.

“Under different circumstances, yes...under anaesthetic”.

In Memory Of

2010-11-07T17:18:00.000Z

Yesterday was a strange one.

The Service of Remembrance for Organ Donors was held in Dublin and I had to go. I will admit I wasn’t keen on the idea. I have not been happy for the last week or so and the idea of dwelling on my current situation through reflection at a semi-religious gig did not appeal.

But above that, there was the sure sense that someone in my position should be there. It is little to ask, that once every year, we organ harvesters and would-be organ harvesters, should come together and remember all of them.

Regular readers will have picked up on my pessimism when it comes to God, but I have some belief in the idea that where many people gather with a common spiritual purpose, something is achieved, some plain is reached.

The purpose of yesterday was to acknowledge the thousands and thousands of people who have donated organs since those operations were first carried out here decades ago. So many hearts, lungs, kidneys, livers and pancreases all floating around above ground and below the heavens, ticking on, despite accidents and traumas that killed many who were too young to die.

The Service was not so moving for me. In my selfishness, I found it difficult to see beyond the point where my own dialysis tube ends and where these miracles and acts of generosity and renewed life begin.

But I could appreciate the extreme sadness of so many families who were there, many probably not long bereaved, coming to that Church to see not a reincarnation of their loved one, but to seek solace in the fact that some good has come of that death.

For those who are transplanted, it is an odd occasion. It must be similar to a person who emerged unscathed from a two-car collision attending the funeral of the unlucky driver who died. You feel complicit in this grief, as though you were an accessory to it.

That would be my take on it anyway. I have written before about how uncomfortable I am with the fact that someone will die and I will profit from that. Not quite blood on my hands, but it feels wrong. It feels like unethical ambulance chasing by a greedy lawyer and grave robbing rolled into one. A Lionel Hutz-and the grave robbers from Huckleberry Finn-combo.

I hope in future, when I attend these Masses as a transplant recipient, I will be able to grasp the full reality of the occasion. I know it will be difficult to cry for someone I never knew and that whatever tears there may be will be of relief and gratitude for the fact I came through the other side of dialysis, but I hope there will be more.

I hope I never become complacent about it. I hope I never forget that the anniversary of my transplant will also mark the anniversary of the death of my donor. I hope I always remember to send a letter to that person’s family every year; that I live long enough to write a thousand thank yous in a thousand different ways.

Transplant's Next Top Model

2010-11-03T22:28:00.000Z

I met another real-life transplant recipient the other night.

He is just recently resurrected and his new life is suiting him well. There were complications, which he was honest about. There was praise for David Hickey - he who makes the incision and transplants the kidneys in Beaumont - which was nice to hear. And there were positive words about how it will happen for me too.

The mother went home happy to have heard all this. I went home pensive.

What struck me most was the difference that exists between the male patient - somewhere in his fifties, married, at a point in his life that is comfortable and secure - versus the female patient, somewhere in her twenties, unmarried and at a point that is pockmarked with insecurity.

Let’s face it. I’m as vain as the next girl. I make efforts to conceal bags under my eyes and spots that may appear on my face, I use lip gloss to make my mouth look pout-perfect, I apply mascara so that my eyes look wondrously large and beguiling and I wash my hair every day so that it swishes.

I have grown used to the fact I’m a freak with a tube in my tummy and I now fret about how much worse this body image could get. I have heard rumours – bad, bad rumours – about what the anti-rejection drugs and steroids do for your appearance after transplant.

Bald and fat. These are two adjectives that may await me. Some people report hair loss from Prograf; everybody talks about how the steroids make you feel endlessly hungry, leading many to gain poundage.

I looked at this transplanted man the last night, sitting there in his pyjamas, swollen legged and one stone heavier since the donated kidney gave him back the ability to see food, desire it and enjoy it.

In my vanity, while I could appreciate the new life that sat before me, I was distracted by the cosmetic repercussions.

For this, I blame my own clear insecurities and my need to leave the house of a morning, knowing that I don't look too bad. This has been the half of the battle that I have chosen to fight, and fight well, for the last two and a half years. Never underestimate the value to your mental health of putting the fair side out.

I need people to judge my book by the cover, cos if it’s what’s on the inside that counts, then my inventory is a bit embarrassing: two diseased organs, one heart (probably enlarged due to hypertension), a tube sitting somewhere beneath my belly button, lungs that are under pressure from fluid pressing upon them 24 hours a day, and a healthy liver that’s wondering what the f**k happened to the rest of the lads.

The cover is all I have to work with.

The live register and dialysis

2010-10-31T20:45:00.000Z

Recession has hit my treatment.

Baxter – they who are in the business of Brendans - is to cut loose almost 200 of its workers from one of its Irish factories.

This particular Baxter factory is local to my house. It was one of those brand names that popped up in my vocabulary when I was a child, and stuck there by virtue of its omnipresence in the life of the village, the town, the county.

Half the kids in school had a parent who worked there; everyone had an older sibling who got a summer job there at one point or another.

With sickness, and my starting on dialysis, I took some vague comfort from the economic symmetry I could see in my plight.

The factory that had provided employment in abundance for the community into which I was born was now supplying me with a lifeline to prevent me from dying.

Supporting local industry.

Now the factory is in trouble, itself on a life support of sorts, a good wallop of its workers preparing for unemployment.

As I have driven past Baxter over the last two years, I have often seen them coming and going from their shifts and I have wondered how much they ever consider the work they do, how aware they are of the difference their product has on the lives of people like me.

Now, after years and possibly decades of that work, they are facing their own problem in the shape of a different type of uncertainty to the uncertainty that lies before dialysis patients.

They may have children and health problems of their own and little hope of alternative employment on this side of the country that does economic depression better than others.

I wish them all well. My future lies in the hands of some soon-to-be bereaved family and surgeons; theirs lie in the hands of economic forces and the government.

One would have to say that optimism lies more realistically and comfortably with the former.

PS Many have commented on my new design. I'm glad it is pleasing to your eyeballs and credit goes to my favourite web genius, Milo Shaper. Please make use of the buttons at the bottom of every post to 'like' it for facebook or 'tweet' it for Twitter.

Some thoughts on Beaumont

2010-10-25T16:42:00.002+01:00

It feels, in some ways, as though I’ve been adopted by a family, but they forgot to come and collect me at the orphanage.

Or as though I have been injured somewhere along the journey to the summit of Mount Everest. I have put the call for help in and I know it has been received, but I don’t know if anyone is actually coming to get me.

It has been 14 months since I was granted an audience at the transplant unit at Beaumont Hospital. This was a formality. All my tests were complete, and the surgeon signed off with his esteemed opinion that I was fit and healthy (well, relatively). I was then officially pronounced “active” on the transplant list.

Since that day, nothing. Not a phone call, not a Christmas card, no general mail-shot from the hospital, no text to assure me my name is still in their files somewhere.

This irritates me greatly. I know they communicate with my medical people every month and I know that my bloods are sent to Beaumont every three months for regular testing for antibodies.

But the communication I crave is something more direct. A line between patient and transplant coordinator. I know they have bigger things to worry about in the immediate activity of a busy hospital ward, but still, a little initiative for the hundreds of people on the transplant list would not be difficult to arrange.

An emailed newsletter every quarter, perhaps; an update on how many transplants they have carried out recently; any indication to the patient that there is a whole hive of life-saving activity ongoing in that unit and that you will eventually have your turn to benefit from it.

I know some of you will be thinking ‘why doesn’t she tell this to someone who can do something about it’. I have. I mentioned it to one of my consultants some time ago and he agreed to bring it to the attention of his colleagues in Beaumont.

This is the Irish health service however. Therefore, the best I can hope for is that some action might be taken in the next decade.

I will most likely require a second transplant in my lifetime. Maybe by then, Beaumont will have an app for the futuristic version of the iPhone, sending an alert every time an organ is donated.

Then, that phrase I used to rhyme off when I was young would make a new kind of sense.

"Every time a bell rings, another angel gets its wings".

For trivia kicks, name the film in which that line appears...

That's right. It's a Wonderful Life.

Air Rescue

2010-10-18T12:08:00.004+01:00

Looking around the A&E, I contemplated whether I was the only female in there as a direct result of an abusive relationship.

A Saturday evening. Women everywhere united in an insane need to watch that awful, awful show, the X Factor, and women in this waiting room united by their suffering at the hands of the man in their life.

My man, of course, is Brendan.

The pain that began as soon as I started dialysis on Friday night became increasingly unbearable until the decision had to be made to wreck the weekend with a visit to the grimmest outpost of the Irish health service.

One of the perks of arriving at an Emergency Department already in the throes of a chronic illness is that you are fast-tracked through the trolley system – no hospital wants you to die on their watch.

There was speculation first that the tube had shifted inside me, that it may have somehow hooked itself on to my omentum (the internal layer of tissue that covers the peritoneum).

The agony was being felt in my shoulder - one of the hilarious little quirks of the body. Anybody on APD will know that the first few rounds of dialysis grant you a jolt of pain in the shoulder area when the machine is draining your tummy of fluid.

This was much more than a quick jolt. It felt more like a heart attack, but at that moment, a heart attack actually seemed preferable to the idea of having surgery to return to the tube to its correct position in my pelvis.

Those doctors can be such Daily Mail-like scare mongers however. X-rays revealed that my tube was behaving itself perfectly well, that it had not strayed or gotten involved with any tissue. Their diagnosis was thus downgraded from a Code Red and they told me the pain was being caused by...air.

Fucking air????

Apparently if any air bubbles leak into your peritoneum cavity through the tube, they lie there, ‘tickling’ the diaphragm and causing unmerciful pain to shoot through your shoulders.

Brendan did this to me on purpose. As I mentioned some weeks ago, I have started using extension lines to keep him as far away from me as possible. Those other abused women may banish their man to the couch, but I only moved Brendan to the hallway, and still he had to punish me.

He is now back in my room. Extension lines abandoned, sleeping again side by side.

I swear he is louder than ever now. Or perhaps that is just his form of an evil cackle, mocking me.

Idle thought

2010-10-12T21:06:00.005+01:00

This post falls into the ‘curiosities’ aspect of my blog description, and it is the curiosity of crying.

Not a curiosity, you say? More a simple reaction, learned at birth and controlled with age, despite the rolling disappointments of growing up and growing old?

Well, it is curious to me. I observe the little ones in my life. The newborn with her occasional bawling episodes which are her only form of communication, telling her parents that she needs to be fed or that she wants to be changed or reminded that they are still there, somewhere in the dark.

I see how and when the two-year-old cries. She has by now realised the best way to attract attention is to let out any noise that signals distress. You can see she isn’t really upset. She watches you with inquisitive eyes and registers how you react.

This is clever, part of her learning, but it is something that her godmother will ensure she grows out of. A girl who unleashes tears to get what she wants is manipulative. The shepherd boy may have cried “wolf”, but the shepherd girl released a few big droplets of emotional blackmail and succeeded in getting the townspeople to just mind the sheep for her.

I know some who cry easily. At fiction, mostly. Or at the stories of others. This is soft crying, and it is a sign of an empathetic nature. We may be the only animals who will murder our own, but we are also the only species who can feel genuine sadness for the sadness of strangers.

I know others – those who have had more difficult lives – and they cry as the broken people do, with the kind of abandon they couldn’t apply to selfish teenage rebellion because of the situations in which they grew up.

I recall one night out when one such friend discovered her coat had been taken. She cried like everyone she loved had just been taken from her. For her and many others like her, it is never a case of crying for that moment alone, but of sobbing for every upset they have ever known.

When I think back to my father’s funeral, what shocked me out of the surreality of watching that funeral scene through the eyes of a child was the sight of grown men I had known all my life, crying. Strong men, those who always knew what to do, who were tough and hard-working and who to my mind had never discussed a whole lot with my dad other than the weather and the price of cattle.

I understood many things in those days. That people who may never converse in a deep fashion will still have a fierce love for those with whom they grew up.

I came to understand also that while crying may indeed be controlled with age, the urge – and occasionally, the irrepressible need - to just let the tears come spilling out, never, ever goes away.

Leaving Cert song revisited

2010-10-05T22:47:00.005+01:00

This song was a big hit the year I was doing my Leaving Cert. Back then, all the lines seemed to sing to our excited selves as we moved on to college. Now, more than ten years later, I have tweaked it to my current situation.

If you want to remind yourself of the original, click here:

"Ladies and Gentlmen of the Transplant and General Sickness Class of 2010...
Wear sunscreen,
If I could offer you one piece of advice pre and post-transplant, sunscreen would be it
The long term benefits of sunscreen has been proven to help fend off the skin cancer that threatens you as a side effect of anti-rejection drugs,
Whereas the rest of my advice has no basis more reliable than my own meandering experience.
I will dispense this advice now...
Enjoy remembering the power and beauty of your youth; oh never mind, you already know that you did not understand the power and beauty of your youth until it was taken from you.
But trust me, you will pass many hours looking at photos from before you were sick and recalling in a way that fills you with grief just how much possibility once lay before you and how fabulous you once looked.
You are not as pale and drawn looking as you imagine.
Don’t worry about the future, you already know worrying is about as effective as trying to change blood results by chewing bubble gum.
The real trouble in your life did turn out be the last thing that ever crossed your mind; it really was the kind that blindsided you at 4pm on some idle Tuesday.
Do one thing every day that reminds you you are still alive.
Sing,
Don’t be reckless with other people’s hearts; don’t put up with people who are reckless with yours
Floss
Don’t waste time on being jealous of the healthy people who surround you; sometimes you’re ahead in dealing with life’s crap, sometimes you’re behind; the race is long and in the end it’s only with yourself.
Remember the compliments you received before the nicest comment became “you’re looking well, considering...”
Forget the insults and the startled looks of those who haven’t seen you in some time -
If you succeed in doing this, please tell me how
Keep your old love letters from the time when love was easy and not secondary to sickness
Don’t open your bank statements to be reminded of how your earning power was slashed the moment you became ill
Stretch
Don’t feel guilty that it no longer seems important what you do with your life
The most interesting people I know didn’t know at 22 what they wanted to do with their lives, some of the most interesting 40 year olds I know still don’t
Take your calcium acetate tablets if you are on dialysis
Be nice to whatever kidney function remains, you’ll miss it when it’s gone
Maybe you’ll marry someone who accepts you regardless of your condition, maybe you won’t; maybe you’ll defy the odds and your broken body will produce children, maybe you won’t; maybe your transplant will still be working at 40, maybe you’ll dance the funky chicken when you’re named the longest recorded living transplant recipient in the world
Whatever you do, don’t congratulate yourself too much or berate yourself too much either
The choices that are left to you now are your real chance. A little different to everybody else’s.
You must still enjoy your body, use it every way you still can...don’t hate it or be afraid of it or what other people think of the scars on it. Despite its failings, it is still the greatest instrument you will ever own.
Dance...even if you have nowhere to do it but in your own living room
Always read the directions on your medication, even if you don’t fully follow them
Do NOT read health magazines, they will only make you feel more poorly.
Get to know your parents and appreciate how your illness is killing them just as it is killing you.
Be nice to your siblings, they are the best link to your past and the people most likely to offer to donate an organ to you in the future.
Understand that friends come and go, but only a precious few will remember to call you up and simply ask you how you are
Work hard to bridge the gaps between their healthy lifestyle and your hospital existence, because the sicker you get, the more you will need the people you knew when you were young.
Try to go private once, but leave this behind before it makes you haughty; go public when you have to, but leave this behind before it makes you bitter.
Travel as soon as you have recovered from your transplant and you no longer have to bring a dialysis machine.
Accept certain inalienable truths
Prices of tablets will rise; politicians will waste the money that should be spent on the health service, you don’t know that you will grow old, but if you do you’ll fantasise that when you were young prices were reasonable and politicians were noble and children respected their elders
Respect your elders – even if they moan and you wonder how they can be so downhearted when they have made it to an age you may never see
Don’t come to rely on the support you receive when you’re sick
Maybe you have a trust fund, maybe illness benefit is enough to sustain you, but you’ll never know when the state will pump the guts of €50 billion into bailing out the banks and all social welfare will be cut
Don’t mess too much with your hair because future chemo and anti-rejection drugs may make it fall out
Be careful whose advice you buy, but be patient with those who supply it
Advice is a form of conversation that fills the gaps where ordinary people have no clue what to say to make you feel better.
But trust me on the sunscreen...

Human infants

2010-09-25T13:23:00.002+01:00

Her name is Grace and her arrival breathed new life into an existence and a homestead that had become sad and weary. My brother’s baby. His daughter. How strange that sounds, to think that the boy I built the treehouse with is now a father.

Her birth brought more joy that I could ever have imagined. I am not the most maternal of girls. I was loathe to become one of those who cooed over every little movement, but even I could quickly appreciate the magic her very presence brought to us all.

She is unaware of this, of course. She may never comprehend the difference she made at a time when we needed to be reminded that life is indeed beautiful. She arrived just over twelve years after my dad died and about 18 months after I was given a diagnosis that would change all our lives.

The years had been difficult, not in an overt, obvious way, but in a creeping and slow erosion of the spirit that once filled our home. The silence that descended in the days after the funeral mourners had left, settled and hung there as a reminder of what was now gone forever. Who was gone forever. Junior and Leaving Cert results, Debs balls, Christmas dinners, college days and graduations all muted slightly, somehow hushed – not on purpose, but by default of grief.

The revelation of the pregnancy brought the first glimpse of life again. The birth completed the process. There she was, the first baby in our family since the country was last in recession and I made my entrance in the eighties.

She is now the centre of the world, as she should be. All smiles and stumbles as she gets to know herself and figures out gravity and the placing of one foot in front of the other.

Whatever she grows up to be, she has already performed a miracle. She brought happiness again, fresh and pure and hopeful.

Grace is almost two now. You may ask why I choose to mention and write of her today?

Because last night, while she was sleeping, she became a big sister.

Welcome Baby Beth.

Catch 22 - The Alternative Version

2010-09-21T12:22:00.003+01:00

While lying in the hospital wing following the death of Orr, all of Yossarian's dreams and nightmares converged and collided in one diagnosis.

So long had he pretended to be afflicted with his fictitious liver disease, he forgot about the possibility of actually becoming ill.

But they told him this had now come to pass, his kidneys were dead and he would have to start dialysis.

Yossarian considered this turn of events. On the upside, it meant he would no longer be forced to fly any more missions - thus sparing him the possibility of death - but it also unquestionably meant he was now actually dying.

After some time on dialysis, he began to feel atrocious. A feeling that even the sight of his beloved Chaplain could not weaken. The feeling of being run over by a steam roller and of having the life gradually drained out of him.

He went to his superior and asked what could be done about this:

"Well you're dehydrated so you need to drink a lot more and take lighter dialysis for a few days"

"Won't that mean the toxins which should be cleared from my blood will just remain there, making me feel more nauseated, especially in the mornings and last thing at night?"

"Well yes, but that's Catch 22"

"And won't taking more fluid on board increase my risk of a fluid overload which could result in a heart attack?"

"That's Catch 22 also"

"I thought you said the first one was Catch 22?"

"It's a big loophole"

"What if I just don't do dialysis anymore?"

"Well then you'll die. That's the real Catch 22"

Yossarian returned to his sick bed and tried the light dialysis. As expected, he felt less like he had just had an encounter with the big wheel on a steam roller, but more like he wanted to take his insides, shove them in a bin bag and throw them down the garbage shoot.

As he lay there, he thought about dialysis and this Catch 22. He got it into his head that the power of dialysis only lay in the fact that everyone believed in it. Everybody did it, because they thought it was keeping them alive and nobody knew how to stop doing it because of Catch 22.

So he took the brave step of stopping. He felt relieved and released from his burden, he felt alive and for the two days he survived, well those were the happiest two days of his life.

It was actually at this point that he uttered the best quote from Heller's original version of the book.

"I'm not running away from my responsibilites. I'm running to them. There's nothing negative about running away to save my life"

Then he died.

Catch 22 caught up with him.

Tick, tock, tick, tock

2010-09-13T17:54:00.005+01:00

There is one topic that occupies the mind of the dialysis patient.

Time.

We obsess about it, placing it as the starting point of our introductory conversations. Names are irrelevant, it is your point in the dialysis/transplant cycle that identifies you to your fellows in the same boat.

In happy moments, I sometimes think we should all follow the trend of Flavor Flav, that god-awful rapper with the giant clock around this neck.

In less happy moments, I picture myself and all dialysis people as kids in our respective houses, who desperately want to go out and play, but who are looking out the window at endless rain. Fun spoiled.

For many of those awaiting transplants of other organs, time is their enemy, with only a finite supply of oxygen left in their lungs or beats left in their heart, but for the one on dialysis, it is more sophisticated in its torture methods.

Not for us, the knowledge that time is running out. We have the means to stay alive.

No, for us, there is the knowledge of time being wasted. It is usual amongst those who have received a life-changing diagnosis to say they realised quickly that life is short.

“Carpe Diem”, they holler.

We too realise the fleeting nature of a human life, but we can’t get out of the blocks to seize this day. We maintain a half-existence, with 10 hour sleeps at night, a nap during the day and the ongoing feeling of being in a hungover haze.

When I was diagnosed with CKD, I was told that I would have to get worse before I could have a chance of getting better. In this way, pre-transplant patients are unique. New organs are hard to come by and they are precious; you have to wait your turn.

In my case, I had to wait until my kidney function dipped below 20% before I was considered sick enough to be placed on the transplant list. Then came dialysis.

This too brought its unique aspect, in that here was a treatment that would continue for an indefinite period of time. The cancer patient knows they will have a course of chemo or radiation therapy for x amount of weeks or months; others know they will be on medication for the rest of their lives; but the dialysis patient doesn’t know how long they will endure the blood-cleaning services of their machine.

How can you steel yourself for a process when you don’t know for how long it will continue?

You can’t.

So time bullies us and taunts us. Every day, we watch the rain, fully aware of what normality we are missing and of all those elements of life that are passing us by.

We talk about time – the months or years spent on dialysis, the months or years on the waiting list, the hours per day hooked up to the machine.

And we wait.

Anatomy of a lost generation

2010-09-05T19:15:00.001+01:00

The following is a short history of the flawed anatomy of one half of my family tree.

Consider my mother and her siblings. They are all either heading for, or have already passed their 70th birthdays - not old by today's standards, but not young either.

Yet between the four of them, there has never been one serious illness. No cancer, no heart problems, no major surgeries or time of any signifance spent in hospital.

There were a total of nine children born to those four siblings, the first coming along in about 1968, the last (my good self) being born in 1982.

Only seven of us remain alive.

Two of my first cousins have died as a direct result of being born with Cystic Fibrosis. They were the son and daughter of my only aunt, and her remaining child also suffers from CF. He has been kept alive through medical intervention that was not possible for his brother and sister. He received a double lung transplant in 1996 and a kidney transplant in the years since then.

My uncle had four children, the youngest of whom was born with Down's Syndrome and who has in recent years also gone blind.

Finally, my mother added two more children to the mix. A boy and then a girl - a gentleman's family, as was joked to my father time and again. My brother is fit and well, but I have my organ failure and my wait for transplant.

I often muse on our generation and I am reminded of the matriarch that stands at the head of this side of the family tree. My nana.

To say she was a formidable woman is to understate the killing power of semtex. She was born in 1899 and she had her sights set on her 100th birthday and a cheque from the President when she passed away.

I never remember my nana being sick. She broke her leg when she was 89, but she bounced back from that to continue to read the newspaper without the aid of spectacles, to have a sharp interest in current affairs and to order her middle-aged children around as if it were still 1954.

She died of old age really, but it was a battle to put her to sleep. Her will to live overpowered everything else and it took the gentle euthenaisa of a morphine pump some time to send her on her way. My dad always said she would outlive him. He was right. I only hope he was waiting for her up there to direct her straight towards DeValera's quarters on arrival. He was her hero in 1916. Yes, she was that old.

Nana's siblings also all lived to be in and around the 100 mark. To look at that generation and my mother's generation, it would seem that ours was a family that was impervious to weakness and premature failings of the physical kind.

But having skipped two generations, Death and his forerunner Sickness has evidently sought to make up for lost time by invoking double the suffering in our generation.

There is a good chance that of the nine grandchildren my nana welcomed into the world, only half will make it to old age.

She would be so disgusted with that.

Keep your Secret

2010-08-27T13:17:00.004+01:00

Lots of people talk to me about this book they call 'The Secret'.

It is one of those books that makes promises and is categorised beside the 'Self-Harm' section, under 'Self-Help' (I'm always getting those two mixed up).

Fans of 'The Secret' claim it provided them with the tools they required to pull the universe around to working in their favour. It landed them their dream job, got them through exams, made them a better person.

The trick, it appears is to tell the world what you want and then prepare yourself, i.e. "World, I want a bicycle, look I've bought the gear and everything".

For the single girl, it advises that the way to land yourself a man is to park to one side of the driveway, sleep on one side of the bed and clear out half the clothes in your wardrobe.

In other words, you make room in your life for that boy, and you ready yourself for his snoring, his taking over your closet space and his complaining that you can't park properly.

There are two hopes of me ever reading this book. One involves the unlikely scenario of one day finding there are no other words in the world left for me to read. The other involves being captured and held hostage and subjected to torture methods that integrate the use of it and other books as a means of extracting information from me.

However, I do have some time for a 'Field of Dreams' approach to getting my new kidney. I'm not talking about taking a scalpel to myself to show Beaumont I'm really, really ready for a transplant, but about positively projecting my hope that I will have a transplant by this time next year into action of some sort.

So I have taken some tentative steps in this direction. I have decided to start making plans for next summer. First on the list is to send in my application for tickets for Wimbledon. Maybe I will also make rough blueprints for a long holiday.

"If you build it, they will come"

A good night's sleep

2010-08-22T20:51:00.003+01:00

I have referred in posts past to my impatience for gadgetry in all its forms and with all its false promises of an easier life.

If I were present at the invention of the wheel, my initial reaction would have been a shoulder shrug and a 'Meh, what's wrong with walking?'

While some don't like change, I tend to regard it with deep suspicion. I'm not sure why. It is probably an extension of my many insecurities or my general laziness. I do like to find a comfortable groove, nestle in and stay put.

It is for all of these reasons that everyone will one day be taken completely by surprise when I take over the world...but back to my point.

I don't like gadgets and new-fangled items, but I have stumbled upon a dialysis accessory which has revolutionised the way I have been sleeping for the past 400 or so nights, since I first brought Brendan home to meet my mother.

It's an extension set for the patient line - in healthy human terms, it is basically a longer line that connects me to Brendan, allowing me to keep him outside my bedroom if I wish.

I tried it out the last two nights and all I can say is separate bedrooms may be the key to a happy marriage, but it is also the key to a better relationship between one girl and her dialysis machine.

Word has it the health authorities don't tell us about these extension lines because they add extra expense to the already hefty bill rang up by APD patients.

I have some sympathy for this and I don't wish to cost the taxpayer any more money, but good sleeps make for healthier dialysis patients and that may end up costing the health services less in the future.

So if you are on APD and you're having trouble catching your zzzs, ask for some extension sets. It almost makes dialysis bearable.

PS My thanks to Milo Shaper for alerting me to the existence of these lines and to Sonia for providing some samples!

Is it all relative?

2010-08-18T23:00:00.003+01:00

And so she returned. Back from the front, still in one piece, having done her bit for dialysis patients everywhere.

That's one way to view it anyway. My participation at the European Transplant & Dialysis Games was at its core a mission of sorts, to prove that though the kidneys may have failed, the heart has not.

I emerged with five medals and the title of Best Female Dialysis Athlete of the Games. I cannot put into words how utterly hilarious I find this thought. A few years ago, I wouldn't have run a bath. Now I run distances for both enjoyment and to satisfy my competitive streak. That's what a diagnosis can do. What better time to choose life than when it is being tugged away from you?

It is beyond surreal, this latest twist in what has been two and half years of back to back dramatic episodes.

When I was in college, some philosopher type wrote a piece arguing that the phrase 'it's all relative' was redundant. Nothing, he argued is relative. In the case of his writing, he was referring to poverty. We should, he said compare our manner of living and our comforts with those in the third world. We are all humans, therefore we can make the direct comparison and take the guilt and the shame that would ensue rather than shrug it off with that relativity claim.

I thought he had a point, until last saturday night when I was out on a dancefloor at the ball to celebrate the end of our Games and I felt a happiness that I have not enjoyed for some time.

There I was, in my diminished physical state, thrilled to have had such success at an event that caters for those who are ill or who are being kept alive by an organ transplanted into their body by the magic of medical advancement.

The sheer madness of the moment and my response to it was not lost on me. This is what happiness is now. This is where it resides. Amongst new friends who are or once were in my situation, celebrating victories while living with what has been the greatest loss of my life so far.

So maybe it is all relative.

Explanation

2010-08-09T19:43:00.003+01:00

My writings recently have been niggardly.

Not down to laziness or ill health, but due to the arrival at last of the Transplant & Dialysis Games bandwagon into town.

So far, I've done a lot of talking and little in the way of participating, but that will all change tomorrow.

I don't expect to come away with any shiny objects around my neck, but I do hope to do myself and Brendan proud.

I'll let you know how it goes when I complete my lap of honour next weekend (no mean feat when you're dragging a machine behind you).

An encounter

2010-07-27T13:52:00.006+01:00

The dynamics of the meeting were a little strange from the get-go.

Strange for me, I should say. I blame the inner dialogue of my brain. Why can't it ever just let me be?

I was lunching with representatives of Baxter - the dialysis people. It was a meeting called at their request and when you are granted an audience with those who supply the elixir of your life you don't tell them you're washing your hair.

I tried to put it in the most positive context. I made comparisons - imagine having the opportunity to sit down with RTE, UPC or Dublin Bus, the joy I would milk from telling them just what I think of their service and how they could improve themselves. It would turn into a rant, a monologue unbecoming of a lady, a scene.

But that wouldn't fly with Baxter, rage would have to be censored on its ferocious rush to translate thought to speech.

I managed nice. I possibly even excelled at small talk and dialysis jokes. But this light at the fringes did not cloak the unsettling thought that this lunch, this threesome of one patient and two professionals created an odd atmosphere.

One particular notion was on repeat, looping around, removing the cynic in me from our circle of cappuccinos to stand aside, observe and report back the uncomfortable truth.

"Pssst...These perfectly lovely people have livelihoods that are dependent on humans like you having useless kidneys. Your sickness is the misfortune that butters their bread, settles their bills, sees their children through private education".

It is probably the reason why you will never see a consultant having a pint with a patient. They make money from the negative events in our lives. You are thankful to them for saving you of course, but in the same way you are much obliged to the AA for jump-starting your car. It is a gratitude that comes from the head rather than the heart.

The logical in you is thanking them; the emotional in you can't breathe for all the sadness and words without syntax that if spoken would project from you in a scream and a twisted knot of bitterness, resentment and child-like fear. The ego and the id, Freud would quip.

I never wanted to cross paths with the HSE, with my consultants, with the good people at Baxter, with the bin men who collect my health waste, with pharmacists who just about suppress the dollar signs popping up in their eyeballs when I arrive at their counter carrying a prescription full of euro.

But they are all bit-part players on my stage now. The whole bloomin' lot of them, cashing in on the worst days of my life.

Where have all the good times gone

2010-07-23T21:42:00.006+01:00

Missing: My social life.

I appear to have lost it or given up on it or had it snatched from me while I slept several hours before midnight some weekend or other in recent months.

These are the days of revelling that should be all mine, raging against the middle and old age that will quietly enter and fill the evenings with its contented little joys of cocoa and comfy slippers and hot water bottles.

But the promise of happy chatter over incessant beats has failed to lure me out of my corner of Dublin for some time. There are many obstacles. Friends who have proper relationships and who are caught up in that smug waltz of inter-dependency that fills their diaries with daytrips and hand-holding and expensive dinners in candlelit lairs for couples.

I am not blameless however. I don't send the text messages with suggestions for fun on a friday or saturday night. I think about it occasionally, but then I allow that head-full of antics to cede to the reminders that I would have to set up before I go out, I would probably need a nap also, the fact that more than two drinks will have my heart hammering when I place my head on my pillow in early hours of tomorrow.

So there has instead been a growing reluctance to face the weekends. This is something I have only realised in the past few weeks, that I now value weekdays more because then I don't feel so pathetic being in bed early or structuring my evenings around silly soap operas.

Next weekend. Most definitely. There will be dinner and dancing and recklessness in abundance. There will also probably be bed by midnight, but a re-introduction to the night-life of the city of my college days requires the same soft touch as that of a debutante.

Baby steps.

In stilettos.

It's not my fault

2010-07-12T22:39:00.003+01:00

I am enough of an opportunist to know it is a wise patient who occasionally uses her illness as the foundation of an excuse for just about anything.

I don't think this is wrong really - not by any relevant moral or ethical code.

It's wrong to try to get out of an exam by saying your set-dancing, bridge-playing granny has just passed to her eternal reward and it's wrong to fake sickness when you're blooming with health, but when you're fcuked, I figure there's little harm that can be done to your karma in turning the situation to your advantage.

The main excuse that I'm peddling at the moment is that my sickness is making me confused and a bit slow on the uptake, particularly when it comes to technology. It is true - you can check any of the websites - that CKD is said to result in a degree of head-scratching and mild mayhem upstairs. Toxins aren't removed from the brain you see. All those nasty elements that should be excreted remain up there, floating around, clogging up normal thought processes.

Now, I have never been a great one for electronics, having quickly graduated to the OAP bracket of comprehension once the DVD player came on stream and the VCR was relegated to the 'back in the old days' category of technological advancement.

But more recent years have seen the struggle become even more cumbersome. Tonight I tried to download an app to my mobile phone for the first time and I barely made it past the homepage on ovi.com. There were too many instructions and demands for passwords and usernames and requests to sign in to this account and that account.

I fear my lengthy and largely pointless college education did not equip me for all this. And even if I did come into the world with some ability to adapt and learn, it has now been thwarted by this disease that started as a few antibodies in my kidneys before multiplying and posting its poison north to slow the function of my grey matter.

Well, that's my excuse anyway and I'm sticking to it.

Random thought process

2010-07-10T15:09:00.006+01:00

Some people walk away clean.

Raoul Moat didn't, but so many do. They make mistakes, they mess up and mess about but it never catches up with them.

These individuals fascinate me. They are the untouchable ones for whom bad news is a story, it is removed from them entirely. It is something that happens to other people.

It must create within them a positivity that is beyond my understanding. To expect the best rather than the worst must ensure you are a better friend, a better partner and a better parent.

I know some who are like this, who have floated through life unhindered by a phone call in the middle of the night that disturbs the narrative of ordinary living with endless days of silence interrupted only by crying. Grown men crying. Or by the bad timing that implicates the innocent in a tragedy or an accident of some sort - unintentional harm caused is no less heavy a burden on the mind. Or by a test that brings news that the body has failed.

They are good people, but they are of course still unhappy with their lot in life to some extent because they are human and it is the nature of blessings that you only pause to identify and count them as they disappear rather than while they are granting you refuge.

I know too the others, the ones who don't walk away clean, who are targeted again and again whenever they dare raise their heads above the parapet. They get the late night calls and they find themselves in the wrong place at the wrong time. They don't expect anything other than the worst and this in itself is a preparation for the next episode of misfortune. There are good moments obviously, but they come to be regarded as preludes and interludes before or between.

There is a wonderful word that they created for these people.

Stoicism.

To be indifferent to pleasure or pain, not succumb to the passions or emotions evoked by the good or the bad.

It has to be the ultimate coping mechanism, to find that switch and stop caring.

One would have to wonder whether you'd be better off dead.

Wakka wakka

2010-07-01T21:26:00.003+01:00

Gosh, my last posts have been shockin depressing. Not like me, but optimism and the enduring positivity of thoughts on the bright side aren't impervious to other forces.

Even when you're caught up with an illness, there are the normal battles of a twenty-something-year-old on other fronts. They serve as distractions sometimes, most of the time they just make the war itself more difficult.

But I did have one funny thought in all the recent long days and that was that after over a year of trying to describe the noise Brendan makes, I have finally been granted a useful aid for demonstrative purposes.

The vuvuzela.

That monotone drone? That's what I get from Brendan for eight hours every night. It's interrupted by a bit of banging and hissing about once every hour when it drains my tummy and starts filling me for the next 50-minute cycle. But for the most part, that hum that's reminiscent of a swarm of bees trapped inside a fridge, that irritating buzzing that TV viewers of the World Cup will have endured for the love of the game in the last couple of weeks - that's Brendan.

If I had known this tribal horn was going to be such a feature of South Africa and that the sensitive ears of extremely valuable bodies would be affected, I could have offered Brendan to some of the boys in advance to acclimatise them.

Or suggested we organise a symphony of Brendans...seat them around a small stadium somewhere and invited the players to come and practice in such a setting. Maybe even got Adidas or Pepsi to film one of their ads where players just happen to all walk out of alleyways and start doing their tricks with some street urchins and Oliver types.

Too late for that now, but all is not lost. In recent weeks it was announced that the 2010 World Transplant Games will also take place in South Africa. I'll hopefully have had a successful transplant by then and Brendan will have left me, so returning to that noise will be something of an auditory homecoming.

A tearjerker...my apologies

2010-06-25T23:29:00.004+01:00

Today is my dad's birthday.

It's almost 14 years since he died and I was 14 when he died, so I am reaching a stage of unwelcome equilibrium. How strange that he has been absent for the same length of time he was present.

I question my memories of him now. Whether they are truly mine or whether they are constructed from the recollections of others who had the pleasure of his company long before I featured as part of his legacy.

The stories I have heard have chided my youthful ignorance of the revelation that mothers and fathers were people before they were parents; that there was life before our family unit and that that life was exciting and funny and even rebellious at times.

My dad was always the one who accompanied me on trips to the doctor. The usual minor childhood illnesses (of which I had several) drilled us in what became a familiar routine. A day off from school and a day off for him from work, into the back of the car with a pillow and blanket, into the doctor and then a video of my choice and whatever treats I wanted on the way home to the couch which always served as the sick bed.

It was also dad who was with me for my first encounter with a nephrologist. That was when I was 12 years old and there were mutterings we hadn't heard before, suggesting that something may be wrong with my kidneys. Nothing was confirmed in tests that saw me go under anesthetic for the first time and I was sent home to be a normal child and grow out of it.

It is now known that this was the point when my kidneys began to fail. The doctors I have come across in the last two years have grumbled that if we had caught it then, they'd have done this and that and maybe put off the inevitability I am now living with for another few years.

I have no time for their medical opinion on this one. I am glad my dad didn't know what was ahead when he died, that he passed away without worrying that he was leaving me behind with nobody to put me in the back of the car with a pillow and blanket or to get me a video on the way home.

For my increasingly hazy recollections of him, I do remember his laugh and I remember him waking me up with chocolate milkshakes at all hours when he would come home from a meeting. I remember him always asking me what page I was on now of whatever Enid Blyton book I was reading and taking delight in my grasp of the Irish language which he didn't share because like many of his generation, school was dropped out of necessity for taking over the family farm.

Most of all I remember that he was a gentleman of the kindest and most patient manner.

I can only hope that I also made his life, in some way, wonderful.

The stats

2010-06-22T10:24:00.005+01:00

With the anniversary now gone by and the move into my second year on dialysis complete, I have tried to compile some statistics.

Numbers aren't as good a friend to me as words, but here are some figures from the year that was:

There have been 364 nights of dialysis (one night off, with permission from my consultant).

That amounts to 2,912 hours of being attached by a line that runs from my tummy to the machine in the corner of the bedroom.

I have carried 546 litres of dialysis fluid around in my tummy throughout the daytime hours and by night a total of 4,368 litres have flowed in and out of my abdomen.

I have gone through (and duly recylced) rougly 1,752 cardboard boxes.

I have taken 4,004 tablets and 15 energy injections.

I have had approximately six pints of blood taken from me for various tests.

I have spent zero nights in hospital and only about one hour in the company of my consultants, spaced over approximately seven appointments throughout the year.

I have slept about 3,276 hours, an average of 9 hours per day, split between what I manage at night and naps in the afternoon.

I have maintained my weight in and around the 54kg mark and have had a blood pressure reading that has averaged out at about 115/75.

I have thrown up approximately 40 times (mostly in the last two months) and have had to kneel down in the shower to stop myself from fainting on about 30 occasions.

I have walked and run several hundred miles and driven thousands with Brendan in the boot.

I have disposed of about 100 bags of hazardous medical waste.

I have now been on the transplant list for ten months.

The average wait for a new kidney remains at two years.

Away from it all...kinda

2010-06-15T16:08:00.003+01:00

Holidays are a matter of discontent for me these days. Mostly because I have made the decision not to go abroad until I get my transplant.

I could in theory step off the island for a vacation. It would mean I would have to pack Brendan into his coffin case and try to float him through the metal detectors at the airport without raising an eyebrow.

Perhaps pre-9/11, it would have been possible. Nowadays I'd imagine his presence in any terminal would result in at least a Code Orange Security Alert and an uncomfortable pat-down for me by some butch looking 'woman'.

Leaving the country would also involve getting my beloved Baxter to deliver all my fluids to where I'm going and would require me to bring all the extra accessories that go with dialysis.

I have considered the possibility, but have had any such notions quenched - not least by the tales of botheration from one of my dialysis buddies who is far less prone to grumbling and moaning than I am but who went away for a week with her Brendan and vowed to never, ever make that mistake again.

Potential annoyance aside, travelling would also require me to inform Beaumont Hospital that I should be suspended from the transplant pool as I won't be available if my kidney came up. Am I going to do this? Absolutely not. I am staying put on this rock until I'm sorted.

So this year I am holidaying in a beach town at home. Some have kindled a conversation with me in cafes or in the queue for a 99 in the shop, saying the recession can't be all bad if we're here on a day like this, with the sun finally finding Ireland and the waft of fish and chips always hovering on the breeze.

I agree with them and smile politely cos I'm a far nicer creature on holidays than when I'm at home.

But I am of that generation which was brought up to believe you have to go away to get away, and I look forward to the day when I can board a plane bound for somewhere strange and exotic again. Already there are blueprints of journeys in my head. So many places to see.

There is the niggling concern about my carbon footprint, but I'll plant a tree.

Heck, I'll plant a whole forest.

A terrible beauty

2010-06-04T16:46:00.003+01:00

It calls for both a 'woo' and a 'hoo', this day that greets me every three weeks when I am allowed to give myself a medicated, synthetic energy boost.

It is my most favourite of medications, 30mg of a liquid known as Arenesp. If I were to create a metaphor (and it would be rude not to) this excursion through dialysis could be regarded as a marathon and the Arenesp days mark the water points along the route.

It comes in the form of an injection. I keep a box of syringes in the fridge, currently next to four bottles of beer and out of reach of any children - though if they are any childer-beasts found near my fridge, they've broken in to my apartment, so I say let them stab themselves in the eyes, that'll teach 'em.

It is I who performs the task of giving myself the injection - and it took some getting used to. Nobody likes needles and fewer still are comfortable with not having a doctor or nurse to silently curse and hold accountable when you feel that pinch.

A quote I read from Ian McEwan recently summed it up nicely. He points out that there is nothing in nature to resemble the sight of a syringe piercing skin. It goes against the natural reflex of every sensory nerve to inflict this upon yourself, to willingly infiltrate the bloodstream with something unnatural.

Deep, I know.

I actually didn't come up with any of that myself. I heard two junkies talking down around the Cornmarket the last night. Deep in reflection they were before shooting up.

I'm an awful woman for eavesdropping.

My bit on the side

2010-06-01T11:18:00.003+01:00

It will not have escaped the attention of observant This Limbo readers that some impostor features have sprung up in the margins.

Check out Playing for Life if you have a chance - it's a blog I've been asked to do in the run-up to the Transplant & Dialysis Games and it'll chart my progress towards the events in August.

I should say that early optimism for unprecedented success at said Games has been given a true reality check and the hype is now more muted than bellowing.

If you think 'sick' people would be lesser competitors for their illnesses, think again. They are athletes and they kick ass.

A day of reckoning approaches

2010-05-30T20:08:00.004+01:00

Tomorrow - my study of the alignment of the stars, the tilt of the earth towards the moon and my homemade sundial tells me - will be May 31.

Which means it's almost June already and time to discard the first calendar which has marked Year One on dialysis.

It also means I have a date with a bottle of vodka and several boxes of pills in a pre-planned suicide attempt.

It was a pact I made with myself this time last year, that if I got to this point, I'd just give the sadistic bastard that is God the last laugh and quietly surrender.

This was the only means by which I could trick my brain into ceding to dialysis. I had to convince myself that such would be the brevity of my reliance on the treatment that one day I would only have a hazy recollection of the time when I was dependant on a machine to keep a heart attack or stroke at bay.

I am reminded of that song from the musical 'Rent'. How do you measure a year? They suggest markers like sunsets and miles and cups of coffee. While there have been many smiles and moments of loveliness in the past twelve months, I largely measure the year gone by in boxes and litres of fluid and hands worn from many, many three-minute hand washes.

And now there is the awful thought that this may just be the overture. The Ballad of Brendan may in fact be a full-blown opera and there isn't one fat lady in sight, unless you count Mary Harney and she's hardly going to help my case.

There will be those reading this who have been or once were on dialysis for much longer and they will regard me as a wimp and a moaner.

Two charges I accept without protest.

But luckily so, because for all my dramatic talk, it is my wimpishness that will ensure I could never carry out my threat.

So it'll be Happy Anniversary to me and Brendan. I'm looking for suggestions as to how we can mark the occasion. The official date is June 21. The longest day of the year. How very apt.

Tesco - Every little Helps

2010-05-27T21:34:00.004+01:00

I had a golden moment yesterday, in the Barry's Tea sense of the phrase.

It happened in Tesco which just goes to show that miracles can be visited upon the earth in the most unlikely of places, including a rubbish supermarket that can sell you car insurance but regards a well-stocked fruit & veg section as optional rather than essential.

In preparation for a night with friends that would largely centre around cheap pizza and even cheaper wine I went to purchase that which was on special offer over the road.

As the cash register lady* scanned my items, she eyed the wine, looked at me and then asked me for ID. I laughed. The nice people behind me in the queue had a chuckle. It was all fantastic fun, until I clocked her expression and the unwavering and authoritative stare of one in full citizen's arrest mode.

"I'm 28 in human years and 104 in dialysis years you mental woman," I screamed in my head.

"Look at me ravaged by life, look at these circles under my eyes caused by Brendan, look at this tummy, scarred and under occupation by the foreign dictator that is this tube," my head voice continued.

But I smiled politely and apologised for the fact that I did not have any proof of the fact I was over 18 but said I could assure her I had long since left any age of schoolbooks and teen drama behind.

The episode got me thinking that there should be an alternative ID system for people who deal with crap - counting maturity as a measure of stress and trauma suffered rather than in birthday cake candles extinguished.

Those who have sailed through life wouldn't be allowed any alcohol or drugs or given permission to enter clubs or pubs or casinos or to play the lotto.

Only those who had experienced loss or hardship or pain would be permitted to have fun and play games with the hope of becoming filthy rich.

Of course, it would allow for children who were having a hard time to develop chronic addictions before puberty and would probably lead to a lot of violence amongst the messed-up types who would congregate in large numbers to socialise after their anger management classes let out.

I may need to fine-tune the theory a bit.

In the end, I did get the wine and I walked away a little more pleased with the world on May 26, 2010. Despite it all, here was some hope that I still looked fresh-faced and youthful.

Take that kidney disease.

* Cash register lady was admittedly quite elderly and possibly visually impaired

Medicine Women and Men

2010-05-22T13:28:00.003+01:00

Doctors, I have known quite a few.

I reflect wryly on a lifetime that has been punctuated by several childhood illnesses, accidents which were not my fault and collisions with immovable objects which were entirely down to people building walls and driving cars in stupid places.

Every incident taught me a little lesson. Not to drink emulsion paint for instance. Not to get so carried in away in a game of 'tip' that you run into a wall at school. To sleep sitting up when you have whooping cough. To wear a seatbelt.

Every incident also introduced me to a different representative of the medical field. Several of them in fact.

Did one of them ever spot my kidneys were failing? Nah. But I digress.

Some I have come across have had a bedside manner that at best should have seen them specialise in pathology. The practice of medicine rather than theory of their text books made them visibly uncomfortable - coming into constant contact with those individuals heretofore referred to as 'the patient' in their case studies and lectures unsettled them greatly.

In my experience, female doctors are generally nicer, many of the men giving off the impression they are only there because they were judged to be "very bright". If you can get into a career of saving lives, why, it would be almost rude not to capitalise on that means of making money and retiring at the age of 50.

A sense of vocation anybody?

The surgeons I have met have all shared that special...self-assured air of importance. This is something I encourage and actually look for in the scalpel brigade. Humility is not a quality I would wish to attribute to any human who is going to cut me open and meddle with my insides. I want a surgeon who believes he or she is God.

Across the board, what they all share however is an ability to detach themselves and stand apart from the scenes that unfold in front of them, because of them, every day. It is super-human.

While grief envelopes the family gathered in the waiting room or the patient perched on the bed, they maintain a steady voice, a stream of non-commital answers, as if they are blind to the effect of their words.

It makes me think of soldiers in battle. A job to do and someone has to do it.

Perhaps it takes more guts to deliver news of a death sentence than to inflict death itself.

For the week that's in it

2010-05-18T23:36:00.005+01:00

For every seven weeks of denial, there comes again the week of tests. My regular check-up with the doctors who decided against becoming renowned brain surgeons or specialising in human spontaneous combustion, but who chose to become experts on kidneys.

It brings its annoyances, of course. Nobody likes having a needle stuck in their arm and my veins are notorious when it comes to stage fright. There's only one diva amongst the lot of them and she sashays forth to the skin's surface each and every time to take one for the team. The semi-permanent plaster mark on my right arm is a testament to her durability and bravery.

But before the needles, there is the onus on me to collect what urine I pass over the course of 24 hours. A particularly un-ladylike process. Difficult to maintain any sense of grace and femininity when balancing over a toilet bowl, aiming at a container - which brings us to the collateral damage of sickness. After it has hit you physically, it moves on to niggle away at that ridiculous human delusion of dignity.

The blood tests and the urine gathering are the preamble to the main event which will come on friday, the appointment with one of my consultants. There are two of them who work in tag team action. Both men, both nice.

I am however entirely uninteresting as dialysis patients go. I don't have some strange underlying condition that caused my kidneys to fail, my dialysis is working fine (high five to Brendan), I am not overweight (which can make getting on the transplant list difficult) and I'm not a defiant smoker who steadfastly refuses to quit.

Thus my appointments are four-minute affairs.

We go through what medication I'm on. They ask how my energy levels are. They do the obligatory swift examination, but then as we approach wrapping things up, I delay matters by asking some pointless questions.

"Can I roller-blade backwards anymore"?

"If I hang upside down for one hour every day and try to angle all the blood in my body towards my kidneys, do you think that would stimulate function again?"

"Would you think all my other organs are in there pointing and laughing at my kidneys and calling them losers"?

I can only hope that if I annoy the consultants sufficiently, they may slip a backhander to the surgical gods in Beaumont and urge them to transplant me quickly so that they can get rid of me.

I never put a price on love, but ethics can surely be bought at the right price.

A nun I was not

2010-05-15T14:56:00.001+01:00

There is a small snippet of the spiritual journey I have taken throughout my life that the family enjoy recounting from time to time.

It recalls the phase I went through as a young child, when I suddenly took to spending several minutes every night genuflecting in front of the Sacred Heart picture above the fireplace in the living room.

The story goes that I would commence my solemn mini-novena while the 9 o clock news was on the telly, blessing myself constantly and gazing towards Jebus with pleading eyes. The routine was so vigorous in its exercise of grace and piety that my mother was sure she was raising a little nun.

Not so. I remember all this very well and it coincides with the time when I discovered that people got sick and they died. I was most disturbed by the fact that it appeared you could just be snuffed out in your sleep and so bedtime became a point of serious distress.

For this reason I made it my business to square things with God every night before I turned in, in an effort to make sure he didn't take me. I would like to say I prayed for my family too, but nah, it was all about saving myself back then. As a seven-year-old, I was quite self-involved.

But that was a simpler time when you believed what you were told to believe and while admittedly I had more faith in James Bond Jr and Captain Planet at the time, I took it at face value that God existed and He was on my side.

I'm not going to get into the layers of my belief at this point - and there are many layers, which clash and come into conflict, now moreso than ever. Sometimes I believe in something greater, most of the time I don't.

What I do know however is that transplant patients may well be the human beings that God forgot to create until the last minute on the seventh day. There He was, kickin back, watching the clouds go by and He thought "Fuck, I forgot that other crowd of losers".

And just like sunday night homework, He rushed it and left us with organs that weren't quite up to the task of getting us through a whole lifetime.

Maybe He didn't bank on modern medicine finding a way to keep us ticking over with transplant surgery - or maybe He did foresee that and thought He'd like to see how things would turn out when mere mortals tried to play at His own game.

Taking an organ from one of His children and placing it in another? He was curious to observe such messing about, and curious too to see how the human-being with its weakness for experiencing guilt and with its great capacity to empathise with complete strangers would handle knowing that one person had died so that they could live.

Sadistic bastard.

Send in the Clowns

2010-05-10T13:12:00.006+01:00

Ambitions unrealised.

So many of them, I don't care to count. And this feeling that can't be shaken that they won't ever happen now, because I'm just too tired.

It is to my deep frustration that all my childhood I was waiting to do things "when I get big", but then I grew old before I grew up. I may still be in my twenties, but I missed the middle part, the bit that lies between having hopes and gaining hindsight. That's the important phase. That's where you define yourself.

It seems like all my potential is lost. Perhaps it was stored in my kidneys and now it too has failed or is chronically impaired.

The goalposts have of course shifted considerably. Ambition to succeed has been overshadowed by a more basic desire to just survive and feel well again, but there is still regret for the life I thought I would have and the person I thought I would be.

Now I'm defined by a medical condition. Never more so than when in hospital when the semi-circle of junior doctors forms around my bed and I'm presented as an "end stage" or a "stage five".

I just wish I had known. If I had been given some hint that it was coming, maybe I would have spent less time messing around and more time making it count.

Those who know me will say 'nah, you really wouldn't have Reg'. They're probably right. But maybe I would have surprised everyone. Most of all myself.

A Kit Kat break...

2010-05-05T21:26:00.004+01:00

A visit to home.

My real home that is, where I wrote on walls and reared caterpillars and once went through an unfortunate phase of ethnic cleansing with some family pets.

It brings an enforced break from online activity (newfangled inventions such as the internet and the microwave oven are not tolerated there and are in fact suspected to be the devil's business).

It also brings me into constant contact with my mother.

Being sick has brought its advantages when it comes to these visits. There was a time when on my arrival, I would be presented with a list entitled 'Jobs for Reg' and told to get to work. Chores would include everything from mowing the lawn - which isn't so much a lawn as a scene from 'Jumanji' - and painting the kerbing around the drive, which should in my view be set aside as a task for those on Community Service.

Now that I'm poorly - and such is the joy of the family at the simple fact that I'm alive - they don't make me wear my little fingers to the bone anymore. I get to sit down a lot and look out the window, which as you know is one of my favourite things to do.

On the downside, it has turned my mother into a bit of an overly alert sentry when it comes to monitoring me. She seems to be of the opinion that my condition may visibly change before her eyes and thus she devotes her days to staring at me.

If I remain motionless for more than two seconds, she'll be there at my side, poking me. "Jesus, Mary and Joseph, are ya alright?...Reg...REGGG!!!!"

If she could move her bed into my room and sit up all night, watching me sleep and checking my breathing, my heart rate and how Brendan is progressing, I don't doubt she would.

Which brings me to a relevant pearl of wisdom I wish to impart - there are few things in life more valuable than a reliable locksmith.

I realise that many would find this very annoying. It may even cause some mother-daughter duos to fall out. But I'm a patient sort when I want to be and always there has been the fear of losing her in the same way I lost my dad. Without warning.

So I put up with being mired in a technological blackspot for a few days and with the long drives with Brendan jumping around in the boot and ten boxes of fluids on the back seat.

I also endure that feeling that I am being watched all the time and the knowledge that it is only when I go for bathroom breaks (not an excuse I can call on very often with failed kidneys) that I will escape the staring competition with the woman who foolishly gave me life.

One does it for the simple pleasure of waking up in the most familiar surrounding of all and for the sense of being completely at ease that can only come from going back to what you know best.

Conspiracy Theory #1: The government is trying to kill me

2010-04-25T15:42:00.007+01:00

It has not escaped my attention that at a time of recession, people like me are a blight on the nation. I mean sick people - those of us who require costly treatments that weigh down the national debt and who don't contribute much by way of taxes.

When I say it has not escaped my attention, this is primarily because some who claim to love me and to be my friend call me names like "leech" and "parasite on society" and say things like "would you not just go quietly now and save us all a bit of money". With friends like these, etc, etc.

By my reckoning, if this has occurred to the knuckle-headed humans I hang out with, then it has to have occurred to at least one bitter and twisted junior civil servant at the Department of Finance. Thus my first conspiracy theory which I present here today. The government is trying to kill me.

My proof for this is a mixture of the circumstantial and the far-fetched, but I'm keeping notes on all strange happenings just in case I ever need to present myself at the European Court of Human Rights. Or in case I ever get my number one wish which is to appear on RTE's 'Would you Believe'.

I don't wish to document al those happenings at this point in case Big Brother is monitoring my blog, but here's one example taken from my diary last summer:

"June '09. Admitted to hospital to await surgery to implant catheter in tummy. Nurse meets me and tells me I have a whole ward to myself at the very end of Unit 1. Initial delight turns to suspicion. You never get a ward to yourself. You always have to make like a sardine and cram yourself in beside Granny Bonkers and Great Aunt Lunatic.

It soon becomes clear that they want me isolated. They have a so-called "high security" male patient in the unit also.

4.20am Awake to find mental man standing in the middle of my ward. I scream. The guard who is meant to be minding him shuffles in and apologises. Inspection of room in the morning reveals a strange substance spilled all over the floor. Anthrax?

Day two. Wander to TV room for some light entertainment. Mental man enters, accompanied by nurses' aide. He is writhing around and suddenly lurches towards me in an attack. Were it not for my being so nimble and gazelle-like in my motions, it could have got ugly.

I resign myself to steering clear of the TV room, sleeping with one eye open and telling all lies necessary about how I am feeling in order to secure my discharge.

Suspect said patient was an agent of the government, sent to knock me off. They do not want another dialysis patient in the country. Must avoid admission to hospital at all costs and ensure when time for transplant comes that I am accompanied at all times. Preferably by an ex-army type or someone trained in the use of pepper spray and high voltage stun guns".

Some Things I've Learned

2010-04-18T14:31:00.005+01:00

I'm sure there are still many things to learn, but these are some pointers I've picked up...in bullet point form (obviously)

# Looking for answers on why you got sick - and finding them - doesn't do anything to make you feel better. Knowing the source doesn't change the present reality.

# You should not distract a junior doctor while he is trying to insert a needle in your arm. They don't sleep much. Concentration is key or expect to see much blood.

# Ear plugs are the difference between sanity and madness when in hospital

# The little, material things in your life don't matter

# Worrying about the accumulation, security and improvement of the little, material things is what normality is and you will miss that

# You can get used to anything, no matter how difficult, no matter how alien to what your life was like before.

# One day you will find yourself speaking effortlessly about medical terms and procedures and having yourself opened up and patched back together and it will shock you how ordinary those words now seem.

# The easiest way to pass time in a waiting room is to size up the others around you and try and guess what's going on with them. It's far more interesting than outdated magazines.

# Consultants will always want to shake hands with you at every appointment, even though you have been introduced and he/she knows every detail about the inner workings of your body. I think this is an etiquette thing.

# Waking up from an anaesthetic will grant you the most disorientating, queasy moments of your life. You will vomit.

# You should never, ever read about your illness on Wikipedia or on any other website. The people who write these things have a particular fondness for the term "potentially fatal" and they appear to have misplaced any favourable statistics on people who have lived with your condition and done quite well

# You should never, ever read about the possible side effects of your medication. Just take it that the operation of heavy machinery is off the cards for a while.

# When sick, you will spend your time striving to be normal. You will try to work as normal, socialise as normal, eat as normal and exercise as normal.

# The biggest challenge is to realise that life isn't normal anymore and make the necessary adjustments. When that is done, you have reached the point of acceptance.

# Nobody in your life will care about you the way your family - especially your parents - do.

# The line between those who will acknowledge you are sick and say something encouraging and those who will make you feel like Death just typed your address into his SatNav is very fine. Few people know the right thing to say, but be patient with them.

# There is an immediate level of understanding with other people who have your illness or even those who have any illness at all. Maybe cos we feel a little like the lost souls of society. A kind of sick Glee Club, without the killer dance moves.

# When you lose sight of the light at the end of the tunnel, remind yourself the pain/bout of nausea/bad night on dialysis will eventually go away. A favourite phrase I have now and one I repeat to myself a lot:
"This Too Will Pass".

A commercial idea

2010-04-14T20:40:00.003+01:00

Boxes.

I have tonnes of them.

So many, I could open my own little shop and sell them. I reckon there might be a market for it. The homeless, for one. People moving house. Children who always prefer the packaging to the actual toy.

"Parents - this christmas, save some money and give the kids what they really want - a nifty set of boxes"

The source of these pesky items in my life is a company called Baxter. They supply all the dialysis equipment and fluid needed by Brendan and they arrive at my place every two weeks to deposit another mountain of boxes in the space most normal people would reserve for a dressing table or a wardrobe or a cardboard cutout of Barack Obama.

I have long since prophesised that if Kidney Disease doesn't kill me, I will probably die as a result of a box accident. One day, I'll go to drag one of them from the stack in the spare room and they'll all come tumbling down on top of me.

Each box weighs approximately 20lbs and just after delivery there would be approximately 35 of these neatly piled in one corner, so it wouldn't take much to knock the breath out of my lungs and do me in.

"Here lies Regina - her kidneys failed, but in the end, it was re-enforced cardboard that killed her. RIP".

It's all fun and games - ya, whatever.

2010-04-11T18:09:00.006+01:00

It may come as news to many of you to learn that there is such a thing as a Transplant & Dialysis Games - our own version of the Olympics, without the drugs scandals (we're all shamelessly doped to the eyeballs, there's no point in them trying to police it).

The participants are those of us who like to not only defy God by living longer than he clearly intended with the aid of man-made devices and interventions, but who like to run around tracks, hollering about the fact that we have cheated him (yes, we know he'll still get us in the end, but in the meantime, we enjoy the gloating).

The Games are for everyone who had a tranpslant and those on dialysis, all age groups, all levels of fitness and capability. The purpose is to highlight the difference organ donation makes to our lives and also to keep us healthy and fit while we continue to cheat Death.

That's the official line anyway.

In reality, it's all about the gold. It's about winning and crossing the line ahead of the rest and having all the glory that Sonia O'Sullivan missed out on due to various stomach-related illnesses (that excuse doesn't really fly in our Games - we see her "food poisoning" and we raise it "organ failure").

Ok, I may have a slightly competitive streak. I am in fact currently observing a self-imposed ban from the game of Scrabble because I tend to become a monster when presented with a tablet of letters and a challenge to beat everyone else with the words I create.

But personally, it would make me feel like even more of a sick person to be patted on the back just for making it from the changing room to the start line without needing an oxygen mask.

I probably won't win anything at the Games*, but then I'll reserve the right to be really annoyed and behave as the brother does when his football team loses a match - you blame the weather, the opposition, the ground conditions, your footwear, your old injuries and then you stop speaking for two days.

My body may be sick, but my mentality is still the same. You play to win. Period.

Note: The Games take place in August. If you never hear me mention them again, it's because I went out and lost in spectacular fashion. I will then be eating all these words along with all my words from many aborted games of Scrabble.

Could I...? No

2010-04-08T16:10:00.003+01:00

http://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=10636989

One of my best friends, who currently lives in New Zealand sent this on and has suggested we start a collection to buy me a kidney. It's all the rage for Kidney Diseased Kiwis, desperate for a new organ in a country which rates very poorly when it comes to giving the gift of life.

Personally I don't like the idea of my surgery being performed on a rock in some jungle, with nothing but a few bottles of vodka for an anaesthetic and some class of a tribal leader slicing me open to work a bit of black magic and voodoo, with some two-bit translator trying to handle the communications between us.

Me: "They're sure it's a kidney, yes?"

Translator: "You got the liver from the goat, yes?"

Tribal Chief (grinning proudly): "Our finest pancreas from our finest mountain llama"

Nor do I feel comfortable with paying some poverty-stricken individual the price of a second-hand, third-rate motor vehicle for one of their vital organs. I'm not a great believer in karma, but even I would spend my life waiting to be struck by a bolt of lightning if I went through with that.

I would however like to see the look on my doctors' faces when I just dropped off the dialysis radar and they received the following postcard a few weeks later from Outer Exotica Land:

"Lads, I'm sorted. Went for a more direct route for a new kidney. The surgery was a bit hairy at times, but nothing the HSE wouldn't certify as above-board. Will be home soon. Weather great. Regina

PS It's normal to be paralysed from the waist down for a few weeks, right?"

Screenplay

2010-04-06T14:07:00.006+01:00

I've had an idea.

For a vampire movie.

Seriously, I can't believe nobody has thought of it before - dialysis patients could totally cash in on this genre of film that is elevating teen hormones across the globe.

The plot is still a little sketchy, but the gist of it is:

Vampires are taking over the world - the thousands of screaming girls wearing t-shirts with the slogan 'Bite me Edward' get their wish and go the same way as Bella Swan, thus creating a pandemic that over-runs the world in a way that Swine Flu just didn't.

Authorities are on their knees. Horny adolescents everywhere are turning into blood-sucking monsters and there seems to be no way of killing them (sharpened stakes are ordered, but Amnesty International protests and the whole thing gets caught up in the courts).

Enter the dialysis patients of the world. They are called upon to stop this deadly curse. How? They are 'planted' by governments in the areas populated by the young beasts. As every Twilight fan knows, the newbie vampire is insatiable and ill-disciplined. They smell this new scent of blood and are curious.

They pounce, they can't help themselves, but just a few drops of the toxic blood is fatal to them. They die instantly and the dialysis patient moves on to the next pack to carry on his/her patriotic work. The dialysis patient becomes a little anaemic at the loss of some blood (cue scene where the bloodied, heroic patient slumps into a safe-house somewhere, knots a dirty kerchief around his/her arm and shoots up with some EPO before moving on).

The film ends with plaudits, presidential awards and every dialysis patient being granted a transplant from citizens, so grateful at not living in fear anymore that they are willing to part with an organ for the new heroes of society.

The End

An Easter Message

2010-04-04T15:54:00.005+01:00

A letter.

I rarely check my post, easily irritated as I am by unsolicited mail with all its empty promises of a toned body, more pizza than all four of the Teenage Mutant Ninja Turtles could ever stomach and a special offer indoor skiing machine at one of those German supermarkets.

But today, I did, and within I found a rare gem. A personal letter from someone I don't know but who knows my people. She is a wife and a mother of transplant recipients.

It is her daughter, Jeanne's story that she shares. It is similar to my own. Diagnosed in her twenties, long, dull days of needles prodding for veins and blood being cleaned out by dialysis.

The same feelings of frustration and a struggle to hang on to hope. But then surgery and a new kidney and the sensation of having traded in her old body for a shiny, new model.

But the story doesn't end with that. Enclosed in this letter is an added surprise. A photo. Caption: "Christmas '09 - Jeanne with her baby son, aged 3 months"

It is a happy story and it is a 'resurrection' that means more to me this Easter Sunday than any tale told down the road in the parish church.

PS Check out my new design

2010-04-01T22:24:00.000+01:00

A big shout out to Milo Shaper for re-designing my blog for me. He even managed to find a picture of one of Brendan's cousins for the header (Brendan himself doesn't pose for photos...he's kinda like Hugh Grant/Bjork when it comes to cameras...gets very violent and precious).

Milo Shaper is also the current reigning Thumb War Champion of the World. Some people are just born with an array of talents.

Medication - past and present

2010-04-01T19:55:00.001+01:00

This won't mean much to those of you who don't have kidney disease, but for those who do I hope it will serve a purpose. In the conversations I have had with transplant recipients, I have noticed that a lot of people tend to forget the specifics of their illness and treatment prior to their surgery. Understandable. Nobody wants to dwell on the time in their life when they were most sick. The memory plays one of its helpful tricks and files such details away in that dusty cabinet where it sends the not-so-nice information it hopes it will never need again.

When I look back on the last two years, I too find myself starting to forget the finer details of what went on when I was first diagnosed. This is therefore intended as a record for myself, as well as an aide for anybody who might be starting on the road to dialysis and transplant.

So we return to that first evening in the consultant's office. The bad news has been delivered and now he switches into action mode. He is scribbling down my first prescription, issuing orders of when to take what. A list of names that mean nothing to me. I nod and take it and shake his hand. What am I thanking him for?

Then the surreal moments where you talk to his secretary. The matter of payment and a next appointment. What? Money? Of course. She sees tears and says it's grand, you can send a cheque in when you get the chance.

A silent car journey to the chemist. The phone is ringing. A mother frantic with worry, wanting to know, but terrified to hear it. I can't talk to her yet. Standing in line at the chemist, patiently waiting my turn, looking around at the others holding scripts at the counter, seeing myself now as part of this new club.

I step up and hand in my long list. I expect a reaction, for this pharmacist to look at me, all young and healthy and express surprise at this mass of medications I come in search of, but there's nothing. It may be new to me. It isn't to them.

Enough rambling. My initial treatment consisted of four Omacor fish oil tablets a day (two in the morning and two at night), two blood pressure tablets (Zanadip 20mgs and Coversyl 5mgs), Lipitor (10mgs), Aspirin (75mgs). I have a feeling I was on something else at this point, but I can't for the life of me remember what it was.

In the first year, I also received infusions of iron in the hospital every couple of months to help with my anaemia (my haemoglobin level went down to about 9...not too low, but low for me).

The Aspirin was reduced to one every other day in no time at all, due to the fact it was causing me to bruise very easily. I quickly started to look like someone was kicking me around the place every night. I can't entirely blame the Aspirin for this however. I do have a remarkable knack for failing to navigate around furniture and for misjudging my distance from immovable objects.

This was my regime for the first year after diagnosis. The only additions came when I was put on Furosemide 40mgs (to stop fluid retention and give my blood pressure a helping hand) as my kidney function worsened, and also Sodium Bicarb (the most horrible tablet ever because it does taste like salt and baking soda mixed together and it doesn't exactly slip down your throat so much as half-choke you).

When I had my surgery to implant the catheter in my tummy, everything went a bit haywire. First of all, it took them 2 hours to implant the tube - it should normally take about 45 minutes. They figure that was the reason why I got an infection from the surgery and why I was re-admitted to hospital two days after being discharged with vomiting and severe abdominal pain.

All that stress on my body made my blood pressure go crazy again. The Zanadip stopped working and in fact started to give me a racing heart and palpitations. There were times when I couldn't sit still or lie down or do anything for hours after taking it because I could feel my pulse hammering through my body. Very uncomfortable.

So that was changed, and I was put on a new regime with the commencement of dialysis and that has remained pretty much the same for the past 10 months:

Calcium Acetate - 3 times per day with meals to stop the body absorbing phosphate.

Cardura - for blood pressure, I was first on 8mgs a day when my bp was very high (it was an average of 170/125 in those days). It was then reduced to 4mgs and then stopped altogether when my bp stabilised with dialysis.

Rampiril - for blood pressure...initially on 5mgs per day, reduced to 2.5mgs per day now because my bp was dipping too low (down to 90/50 at times which led to a lot of dizziness and fainting).

Lipitor - 10 mgs

Folic Acid

Vitamin B,C and D tablets

(The vitamins and folic acid are necessary because along with taking all the evil toxins out of your system, peritoneal dialysis also removes a lot of the good stuff)

I also give myself a 30mg injection of Arenesp every three weeks for energy...I was on NeoRecormon every two weeks but they stopped this because my haemoglobin jumped too high and this can put your heart at risk. The Arenesp is a poor comparison to the little kick I used to get off the pure stuff.

I wear sunscreen if I am going out in any kind of warm weather due to the risk of skin cancer post-transplant. The dermatologist advised that this would be a good move as I have fair skin and a lot of moles and would be deemed to be high risk.

Oh, and they stopped the Aspirin altogether cos even with taking it every other day, I continued to look like someone's punchbag. Any bruises I collect now I can only put down to my own, unfortunate clumsiness.

Now....any questions??!

Something to listen to

2010-03-30T21:38:00.001+01:00

For anyone who missed The Tubridy Show on Radio 1 yesterday morning (or for those of you who keep similar hours to myself and who are only turning over for another round of zzzzs when he is on air from 9-10am), I thought I'd put up this link to his discussion on Organ Donor Awareness Week. Admittedly, I'm really only doing this because I featured on the programme(!), but also for anyone who is thinking about the possibility of a living donation from a relative, you will hear from a married couple who took the 'in sickness and in health' vow to a new level. Pretty interesting stuff.

http://www.rte.ie/radio1/thetubridyshow/

(Go to this page and just scroll down to 'The Kidney Story'...They spell my name wrong, but this is a constant problem. I know that if anything exciting or tragic ever happens to me with an ensuing media circus, my name will appear in the papers as Rachel Hanley, aged 32...the final insult).

The preoccupations of a mental mind

2010-03-26T14:32:00.000Z

I have this tendency to get bogged down with insignificant details. I fixate on the largely irrelevant, I miss the bigger picture - if it were an original Monet, I would stare only at the etchings on the shiny frame and not at the actual water lillies - the whole house could be in disorder, with goats wandering through it, grazing on a week's worth of leftovers and I would focus all my energy on cleaning on the cutlery drawer until it's shining. Strange, I know.

I'm noticing the same tendency with my thoughts about the day/night I am called for transplant. I think about this all the time. Where I might be, what I might be doing and how I'll react when the phone rings and they say "Woo hoo. Come on down here Regina Hennelly, we have the most amazing kidney waiting for you".

What do they say I wonder? My idea of that phone exchange between myself and the nurse/doctor is based on what passes between a radio DJ and lucky Caller Number 9 who wins the all expenses paid trip to paradise. You see how my mind works and how I digress.

Anyway, the phone rings and this is it. What do I do? I have a bag of pathetic-looking pyjamas packed (another preoccupation - why don't they make and sell pyjamas that are a bit more rock 'n' roll rather than the pro-chicken/bunny rabbit/teddy bear propaganda that is plastered on all the pyjamas on sale at present? I want pyjamas that say I'm waiting for a revolution).

In that bag also is a toothbrush, toothpaste, slippers and some other toiletries to try and ensure I remain in a haze of nice smells to block out the odour of hospital while I'm holed up in Beaumont.

So that's the bag. But I'll need other things and my mind fixates on how I must remember to bring Buster (ok, he's a teddy and that is a bit girlie, but he's my hospital buddy and trust me, he's better company than some of the mental old people you come across when you're in a public ward - most of whom always seem to think I work in the hospital just because I'm under the age of 40, apparently fully in charge of my bodily functions and capable of walking at more than a step on the hour - they therefore constantly scream "Nurse" at me and ask me to get them stuff...if you're offended by this, I apologise, I don't dislike old people - in fact right now my most fervent wish is that I will live to be an OAP).

They tell me I must also remember my medication. Whatever. I'm going to a hospital, surely medication is not something they run short of. Then I wonder if I should take time to tidy up my apartment a bit before I leave...take time to change the sheets on my bed because the family will crash at my place while I'm in under the knife and recovering...Then I wonder if I'll have time for a nice shower before I leave and whether I should shave my legs, seeing as I probably won't be capable of doing this for several days after surgery and that'll just get really annoying.

Transportation is another major issue. This will be a factor if I happen to be down the country, visiting la famille when I get called. If it's just me and my mother at home, will I leave the car and maybe get the train? If I did this, would I be able to stop myself from poking the stranger sitting beside me in the carriage: "Guess where I'm going?" "No, really, guess".

If I try to drive myself, will my brain be so addled that I will be a danger to myself and others on the road? Without doubt, the first thing I'll do when I get the call is throw up. I tend to do that when I get a shock. Never, ever say "boo" to me or jump out at me. Very messy.

These are just some of my preoccupations, all centred on that message which will signal what will hopefully be the beginning of the rest of my life. Whatever minor chaos does ensue in the minutes after I am called, I do know that I will arrive at the ward in Beaumont in quick smart time - perhaps feeling a little shaky and a lot scared - but I will walk through the doors and tell them who I am and why I'm there and say "Yes, I'm ready".

WARNING Blatant Attention-Seeking

2010-03-23T18:28:00.000Z

This is shameless self-promotion on my part, but for those who don't read or haven't the time to flick through the entirety of the weighty Irish Times, I offer a link to my article which was published therein today - it also contains a pic of me for those curious to know what a freaky dialysis patient looks like:

http://www.irishtimes.com/newspaper/health/2010/0323/1224266870184.html

To those who have already read and taken the time to then visit this blog and post lovely comments, I am really grateful. It's actually been a bit overwhelming after going many months without talking to anybody outside of a few close friends about the day-to-day reality of this. I want to reply to each of you individually, and I will do that just as soon as I figure out how...technology is not my strong point and I'm still learning how this stuff works:-)

The stuff of daydreams

2010-03-21T23:22:00.000Z

Daydreaming has always been a problem. Not my fault, it's cos I'm a Piscean. We're the least likely of all starsigns to ever be rich or successful and I fully believe it's because there are entire days when staring out the window seems like a perfectly fine way to pass several hours in my book.

From a young age, it was clear to my parents that the traits they expected to have to deal with in a toddler/child/teenager were not materialising with me. Instead of the usual tantrums, constant attention-seeking and hyper-activity, what they found with me was far more disconcerting - a strange, normally silent girl, who stared at her hands in infancy and remained largely lost in her own world the rest of the time. My dad used to call me his 'beautiful dreamer'. My mother called me many other names, all of which I'm sure had love as their source, but which were rather less kind.

The stuff of my daydreams was dependent on where I was in life. I would fantasise about being the first in my class to be able to ride a bike (how cool I'd look), about winning every race at school (how cool I'd look), about walking into the disco, wearing the most amazing outfit and wowing every boy there (how cool I'd look). You see the emerging pattern here.

I still do it all the time now, except these days I daydream about when it's all over. My transplant, that is. I find myself picturing a new, radiant self. Mostly I picture my stomach, without the tube that is its current fixed accessory. I see a scar, yes, but that'll just be part of me, the little souvenir of this experience that I will carry forward and probably come to regard in the same way I do the scars on my forehead (from running into a wall on my first day at school, from running into the fireplace at home as a child and from a car accident when I was 15). I have also planned to tell strangers that the scar is from a shark attack as I believe this will do wonders for my street cred (how cool I'll look).

I daydream too about the simple routine of going to bed. Right now I sleep with a line from my machine (Brendan) attached to the tube in my tummy. I have to set up Brendan every night, do my three-minute hand washes, align the bags of dialysis fluid, connect them all up and then finally when it's time to turn in, there is another hand-wash to perform and then I attach myself to my lifeline.

Sleeping is one of my favourite things in the world (it allows for more dreaming) and I will never forgive dialysis for the way it ruins that pleasure for me, night after night. I love lying on my tummy. Brendan does not allow this. He beeps. And when he's not sounding his alarm bells, he makes a constant humming noise, followed occasionally by a hissing noise, for eight hours until he regards his work as done. Daydreams about a quiet sleep, not attached to that stupid machine are constant.

I daydream too about the ease with which I will perform every task once that new kidney is transplanted. About having a better fraction of the capability of a normal 28-year-old body again. I'd settle for 75%. That'd give me a good shot at actually being able to get up in the morning and get through a whole day of work and pleasure without needing a nap or feeling so exhausted by 6pm that I actually feel like I may throw up. I might also be able to exercise properly again without feeling like my abdomen is going to burst from the pressure of moving about with almost 2litres of dialysis fluid in there.

In essence, what I daydream about is normality. About being ordinary. I no longer dwell on how great it would be to look cool, but how fabulous it will be to have nothing to set me apart from the crowd. So that's where I'll be found for the coming days, weeks and months as I wait for that call for surgery. Looking out a window somewhere, conjuring images of what is mundane and unremarkable to all those who aren't marked out by illness.

Answers to some Frequently Asked Questions

2010-03-16T14:02:00.000Z

I have considered getting these put on a t-shirt, partly to save time in conversation and partly cos I'm a sucker for bullet points.

Yes, both my kidneys are screwed
On dialysis since June '09
Every night, for 8 hours
A machine by my bed pumps fluid in and out of my peritoneum cavity
Through a tube in my tummy
No. Really. You don't want to see it
Give the machine its proper name - Brendan
Why Brendan? Don't you watch Home & Away?
On the transplant list since August '09
Average wait is two years
It could be more, it will hopefully be less
I only need one good kidney - to ask for two would be greedy
Yes, I still go to the bathroom, though not as much as 'normal' humans
I rarely feel sick
I constantly feel exhausted
I would love a kidney from you, that's so generous
Oh, I thought that was what you meant when you asked "is there anything I can do to help?"
(Awkward silence)
Well yes, I could ask a loved one to donate a kidney
No, I'm not going to do that
Partly because I find it impossible to ask for help
Partly because that person would have an excuse to solicit deadly christmas presents/birthday presents/anniversary of transplant presents/annoying favours from me for the rest of my life
I just wait for someone to die
That person will have to be in and around my age and weight and be a match for my blood and tissue type
What do you mean you don't have a donor card?
Text 'Donor' to 50050. They'll send you one.

Hello? Testing one, two. Is this mic on..?

2010-03-13T18:08:00.000Z

I don't really know where to begin. With the diagnosis? With the first furrowed brow of a GP which left me wondering in the car on the way home whether there might be something wrong? Further back than that to when I was 12 (the point at which they think my kidneys began to suffer failure)?

Or do I start with who I am, what I look like? Or who I was and what I used to look like before kidney disease whispered its cursed spell and organised my vital organs into a military coup?

All of these seem like logical starting points and yet to begin with any of them seems like trying to place order on a reality that is chaotic. The story of my life has been hijacked by an illness called IgA Nephropathy. That's as much as you need to know for now, and the posts that follow will consist of the random thoughts and occasional moments of clarity I have entertained in the nine months since I started a little treatment they call dialysis.