Thursday, November 1, 2012

The letter

I typed it first because heart does not travel to hand anymore, to the pen therein.

Thoughts flow best when they are tapped out on qwerty, watching words appear on the screen as if they didn't originate in my own head. Surprised by them.

My friends joked that my donor family would regret having got me as one of their recipients because they would be tormented with having to read pages long letters every year.

Obviously I had intended to write on each anniversary of my joy and their sorrow. But I thought I would allow also for random notes, scribbled to them at the end of a big day, or just a good day.

Not in some misguided effort to force these strangers to share in my happiness. But in hope of making them less sad, even for a moment. In the hope that it might get talk going in their kitchen again.

It’s one of those incidentals I remember from my dad dying. The silence in the house. The feeling that to create noise or to utter a futile sentence about anything, anything at all, would be taken as a sign that you were moving towards living with his absence. To converse was to betray.

It took a long time for that to lift.

In all honesty, I was itching to write my letter. This, I could do. Typing, deleting, doing over. The tone was never going to be right, but I told them what I knew so far of this new life. I told them about my wondering and my longing.

Wondering if maybe I had sat opposite their son or daughter or brother or sister on a bus one day, or if we had both been on Grafton Street one Christmas evening, looking in at the sparkling window of Brown Thomas. Or if maybe we were both at Witness before it became the misspelled Oxegen.

This is a small island, after all.

My longing relates only to my wish that I could give my donor a hug. That is what I feel most.

The letter was left unsealed, and placed inside another envelope to be forwarded on to the transplant coordinator. She is the go-between between me and this family. The one who rang me the morning of my great news after she left the quiet room of devastation where a family had signed away the organs.

I wonder about her role and whether I am to her the cat that got the cream. Some part of her must dislike me.

When she read my letter, she rang me. Lovely, she said. But not for this situation, not for these people. They’re not ready to know you, even like this, with no name provided, just details of my sickness and my wellness that is due in full part to them.

The writer in me felt rejected. What awful people we are. No matter what the forum or the audience, you come first looking for praise. In this case, I would have settled for acceptance.

My coordinator said she would hang on to the letter and maybe send it in a few months. I called her this week to check. The letter has not travelled any further. Not now. Probably not ever.

It’s not my story they are looking for. I understand that now. To smother them with all I want to say would be selfish. It's a variation of trying to make someone you've hurt listen to your justifications, your pleas, your apologies, when they just want to cry and process a confusion of feelings.

Some editing then, reducing a long letter of rambling to the phrases that are most necessary and that will fit in one simple sympathy card.

“I’m sorry...It worked...Thank you”

Thursday, June 7, 2012

Some disjointed thoughts

1. The rain is back, and it is welcome. The sun had me tormented. Applying Factor 50 to every inch of exposed skin. Re-applying it 30 minutes later. Tilting and re-positioning my hat this way and that, but still looking like I had a want in me.

Feeling the fear at every text coming through once the office blocks released them. "Beer garden?" Going along, because I am there at everything now, a social animal for the first time in all my days.

Edging my chair back into the shade every time that bastard in the sky made a move, chatting to my beloved friends from the shadows, while they lapped up rays that would appear only as a fresh lot of freckles in the morning.

The ears are the real worry, so they say. And the top of the head. And the hands.

You couldn't be up to that skin cancer, and where it might strike.

2. My hair is still falling out. Tomorrow I am going to visit a special hair salon where they deal mostly with women on chemotherapy and sufferers of alopecia.

I am worried that the clients with cancer will hate me, for being there in my vanity, for having life ahead of me, rather than creeping away from me.

But I look forward to seeing the ends of my tresses dropping to the floor. I was hanging on to them, thinking that if I had length, it would disguise the absence of fullness. But they are scraggly, thinned and waning. They have to go.

3. The work scene is a tricky one these days. Those healing weeks I needed to take after my transplant put me out of favour with my on-again-off-again employers.

I am trying to pitch ideas to newspapers. Some weeks I think I'm getting somewhere, only to be put back in my box the next.

I have enjoyed intervieweing, researching and writing to a deadline again though. Seeing my byline over a piece that is about someone other than myself, and about something other than dialysis.

But the newspaper industry is in about as good a shape as my old kidneys. The freelance pickings are scarce, and it offers nothing in terms of security or certainty of an income from one landlord visit to the next.

I have so much joy now, so much interest in every other aspect of living. I am in an almost constant state of delight at how well I feel.

But I have nothing left in the tank when it comes to dragging work out of this recession. I have been begging for scraps of temporary employment for two and a half years, showing up on time, often on days when I was hardly fit to bless myself, and working hard for people who would never value my efforts.

It seems somehow insulting that after all I have come through, after my little miracle, the loss of one life to save mine, that still I sit here and fret over such mundane issues as bank balances and pay slips.

4. I tried Zumba for the first time last night. What a load of nonsense. But what total and utter fun.

It's not often that any of us dance anymore. Increasingly, we seek out seats in the pub, where we talk and drink within our circle. There is rarely a nite club chanced, even after several scoops.

And to dance soberly? Perish the thought.

I will definitely go back next week.

Thursday, May 24, 2012

Something to declare

For the first time in three years and seven months, I left the country at the weekend.

One passport facilitated this, and will facilitate all future trips, in legal terms; but it is the other passport that will give me the world.

It was just a short hop across the water, to London. But my word, the butterflies! And the spontaneous smiling that started a good 48 hours before I even picked up my boarding pass.

It was the thought, you see, of just waking up and being somewhere. And with such ease.

By coincidence, the bus I take to the airport passes through Beaumont, the suburb of the city where I had my transplant almost five months ago now.

Looking in at the rooftops of the hospital, a whole host of memories collided in my mind's eye. Arriving there, leaving there, laughing there, crying there.

The image also of walking up the flight of stairs at the end of the ward two days after the operation, hanging on to the arm of my physio, flinching and trying to get used to the feeling of a new organ inside.

Life never stands still. I thank God for that.

There were some nerves shifting inside me, of course. That I might eat something funny and become unwell over there, or that the airport security people would wrestle my medication from my hands, and I'd have to turn back, defeated.

But they didn't take any notice of me. I guess few enough suicide bombers appear at the departure gates, grinning manically.

I always relish the take-off. It is an action that encapsulates nicely the sum of my commitment issues - the thrill of escaping, of being out of reach, with an awesome force behind you.

Up in the clouds, I had a window seat. I considered that at this great height, I must be closer to my donor in some way. Not in a religious or spiritual context, but just by virtue of being up here, away from the sad events that ruin lives below, closer to all that is mysterious and indescribable above.

I have been to London a number of times, but not in several years. The destination, in truth, was unimportant. This was all about the symbolic, the emotional, the next step in the rebirth and rehabilitation from sick to well.

I was free to be a carefree daytripper; free to annoy my travelling companion by constantly declaring "To the Tower..!"

I did subsequently change the phrase after we had completed our tour of the digs where Anne Boleyn passed her final hours before Henry VIII did her in.

"To the tube..!" however turned out to be no less irritating.

Free to have bananas for a healthy breakfast, and wine at dinner, and ice cream for dessert, before bed in a hotel where my luggage consisted of one girlie suitcase, rather than a coffin-sized case for one dialysis machine.

There was a lot of walking, and while I always had the fitness for exercise, now I have a body of limbs that aren't starved for energy, the evil that was anaemia banished.

We knocked to see if the Queen wanted to come out to play, but she wasn't in. I thought she might let me use the bathroom, for this is the one difficulty with being in the community of the recently transplanted.

The number of public toilets I now am forced to visit. The things I have seen. I could write a book, and perhaps I will.

We flew home Monday night, having also visited the Tate, where my lovely friend declared all art to be "bollox"; having seen 'Chicago' on the West End; and having passed our favourite hour of the trip, running fingers over the spines of second hand books on South Bank by the Thames.

It is the first stop on what I am calling the Freedom Tour 2012. Next stop is Paris. Then I think I'll take myself over to the United States in the Fall.

There are thoughts in my head also of EMIGRATION*. Of leaving this place for a while, for a change of lifestyle to match this changing of the guard with my organs.

What good this miracle if I don't feed it with adventure, with sights unseen, with strange accents and sunsets on the other side of the world?

We shall see, we shall see.

*I managed somehow to spell this incorrectly when I posted initially. Unforgivable. Not least because my thesis for my Masters degree was on the subject of 'Immigration'. It even had it in the title. There must be a stray toxin or two in my brain still.

Wednesday, May 9, 2012


Dear Mr Prograf,

Firstly, kudos to you on the science bit, and on creating an anti-rejection wonder. I'd say you drive a fierce nice car now, but I hope that back at the beginning, it wasn't all about the money, and the genius in you wanted to advance pharmaceutical brilliance.

You did good.

But let's talk about the hair loss that your drug causes.

You see, in all my imaginings of my post-transplant days, I saw showreels of myself tripping and giggling my way across cities and continents with hair.

I did not foresee the daily exodus down the plughole in my shower. Increasingly now I fear the moment of having to wash or brush my hair because of the frightening number of strands that come away in my hands.

It makes me sad, and I truly had enough of that before.

I know the medics say it should "settle down" once my body adjusts to being immuno-suppressed, but if that takes much longer, I am going to have to endure taunts from the meanies on the bus.

"Here, is that yer one Gail Porter?"

Worse still, someone may compare me to Sinead O'Connor, and I am neither bipolar, nor the mother of a handful of children who are all half siblings to each other, and whose living room is a bit crowded come Father's Day.

Please do not mistake this grumbling for ingratitude. I love, love, love my kidney, and I will never stop counting myself as a lucky one.

Luckier even than Dolores McNamara. Euromillions? Oodles of euro in the bank is no fortune compared to mine.

But it really would be terrific if I could have a working kidney and hair.

Some are comforted by the theory that the hair loss is down to your body trying to heal. That it diverts all the protein and the essential minerals towards patching up your wounds, and away from nourishing your tresses.

I'm not buying it.

So Mr Prograf, get thee to a lab, and sort it out. Pronto.

Keep the parts of your elixir that kidney needs to stay healthy. Lose the elements that are turning my scalp into the hair follicles' version of Pol Pot's killing fields.

Good man.

Wednesday, April 25, 2012

Teething problems

Kidney gave me a little jolt last week - a bit of trouble, a few nights of choosing to blink into the dark rather than close my eyes and dream the bad dreams. Visions of it all collapsing around me.

Were there any doubt that kidney is male, these have now been dealth with.

My blood results indicated a virus in my system, which caused something of a panic, because there are a few viral enemies that can strike and target the new organ, particularly in these early months.

We're talking the CMV, and we're talking the Polyoma.

I went away from the clinic with eyes shiny. I hated that day. I wandered, which is what I do when I am trying to out-run thoughts that are dark, and tomorrows that might be worse than today.

Then I went to the cinema, because big pictures and loud sounds are welcome at those times.

Repeat tests yesterday brought relief from the worry. The viral something seems to have come and almost gone without having caused any disturbance.

Emmet is still a brilliance in there. I saw him. I heard him. An ultrasound that was ordered just to ensure everything was still okay gave me a chance to have a look at him for the first time.

A remarkable moment for me. I was as emotional as the actress who over-plays that scene when she has a scan of her baby.

Emmet is a beauty. As regards my own kidneys, well, the radiographer couldn't even find them initially, they are that small now. Total losers.

It's been a strange few days, a little bit of limbo re-visited. It reminded me that with hope, there is also the possibility of disappointment. With this good health, I exist now on a knife-edge.

Turns out, so does everyone else.

Thursday, March 15, 2012

To whom it concerns

In my life, I have received correspondence of all kinds, written with a whole range of purposes. Love letters from boys who came and went; notes in my lunchbox from my mother, when I had been bold and she had been mad and both of us fools were regretful.

There have been letters of rejection from employers who didn't see it in me; scraps of paper passed in class, about the disco at the weekend or with the latest of who was shifting whom; many, many windowed envelopes with hospital appointments laid out inside.

I like getting letters. I like seeing a new email in my inbox. And I know of nobody who doesn't feel some small anticipation at the sound of the letterbox flapping in the morning. Something for my eyes only, from someone who thought me worthy of some words today.

In recent weeks, I have received a different type of correspondence from families who are strangers to me. Hearts broken, grief still clawing away at their door, they have found it within themselves to write.

One mum and dad told me of their son; another mum wrote to me of her daughter. Both young, both beautiful inside and out, both at the start, at the beginning of everything their lives should have held. Both now gone.

The sad stories that these two families have to tell have in common the decision to donate the organs of their children. In fact, in both these cases, the boy and the girl had made their wishes known in conversations with their parents before their donor cards were tragically transformed, from a good intention into a good deed done.

The correspondence from these parents has been welcome. They heard of me through my appearance in newspapers after my transplant. They have wished me well, and I know they mean it.

I have responded to them as best I can. Difficult to make the pen and paper connect and produce some thoughts that may comfort them, but writing back, and giving them the small happiness that comes from the receipt of a letter or an email, that is the least I can do.

I feel in some way as though I owe them, that I owe donor families the world over.

To be indebted like this though, it is no burden at all.

Saturday, March 3, 2012

Taking the Pet Shop Boys' advice...Going West

Last time I was there, there were presents.

There were re-runs of the films that have proven most popular over the years on the telly, and the annual attendance at Mass, and a dinner that I could barely eat.

It was Christmas, and I can see now that it was miserable.

At the time, I prevailed, and continued to play the light-hearted act I put on for the family for every visit, because it's easy to fool even those who know you longest when you have enough practice.

Tomorrow, I will travel home for the first time since my transplant. I'm wary to leave Dublin, where there are hospitals that can respond to my needs, but to see my little nieces again will probably prompt happy tears, because those kids have my heart.

They won't understand the transformation internally since they saw me last, but maybe even they will perceive the change.

I am sure I smile more these days.

And I am told I look younger, which could be the steroids, or it could be that worry and weary are no longer creasing my brow.

The car will stay here. I have the freedom now to take the train again, because there is no machine to transport. No boxes of dialysis fluid to break my heart and hands, lugging them from my top-floor apartment down to the back seat, cursing them silently - and sometimes not so silently.

More often than not, I was left in bad form for the cross-country trek before even putting the key in the ignition.

My luggage this weekend will be identical to every other girl rushing to board at Heuston Station.

Clothes. Cosmetics. Carefree thoughts.

Yes, the load is certainly lighter.

Tuesday, February 28, 2012

On the subject of BFFs

In various ways. Through various gestures. They have shone.

Ladies and gentlemen, I give to you, my friends.

The ones who allocated some hours from busy days to travel northside, and enter that hotbed of the winter vomiting bug and influenza, to sit by my bed a while, and talk.

The many who visited me at home, who put the kettle on for themselves, and filled my evening with conversation, rather than box sets. They revived in me an appreciation for the ailing tradition of visiting each other at home, something our generation has given up on, in favour of meeting and sharing our lives in amongst crowds, in public spaces.

The ones who shopped for ingredients, and came to me, to use my kitchen as it is rarely used, to produce a home-cooked meal.

The friend and neighbour who knew I was expecting a gang in of a Friday night, and devoted an evening to bringing the whites of eggs to stiff peaks, so she could create the most beautiful pavalova for my guests to enjoy.

Those who brought me out of myself, in the initial weeks, when being mingled in amongst the community terrified me in my new state of immuno-suppression. The girls who brought me to 'Dirty Dancing', the old friend who took the trouble to bring me to the cinema - the burden of collecting me and bringing me home, and worse still, trying to ignore my crying at various scenes of 'The Descendants'.

Another, who I have lunched with regularly since college days ended, remained true to that role, preparing a meal for me in his house one day, and bringing me for lunch on another afternoon, post-hospital appointment.

The many, many, many who took the time to send me cards - and I got dozens into my post box. See?

Of those who sent these cards, several wouldn't know me if I stood in front of them. They are neighbours from the place I still call 'home', though I haven't lived there for longer than a wet week since I was 17. Their recognition of my adult face and features is irrelevant though. They know my people, and that is connection enough.

Others have sent me texts, and emails, and these too have been gratefully received, because when you are ill at ease with an unfamiliar body, and when you are in pain, it is a therapy in itself to know that someone is thinking of you.

But it is my best mates who have left me in no doubt as to the enduring value of friendships long established through good times and bad.

All old friends, because when I find a good thing, I have sense enough to hang on to it.

The fabulous, fabulous girl who took the time to put up balloons and banners, and arrange fresh flowers in my apartment in advance of my release, so that I could come home to happiness.

The same friend has hoovered for me, and cleaned my place, and brought me grocery shopping - which she compared to helping the elderly, as we walked around the aisles at retirement pace, me unable to reach most items on the higher shelves (though this is a problem that cannot be blamed on the aftermath of surgery, because it turns out, with or without a working kidney, I am, and will disappointingly remain, a midget).

She further nominated her boyfriend (who in the past two days has become her fiance - major yay!) to drive me to Beaumont Hospital every week for my tests.

There is also the best friend who collected and drove me to town to book a venue for my 30th birthday party, and further brought me on up the road, to try on the bridesmaid dress I will wear for her wedding in five months' time, thus reminding my spine of what it is to wear a high heel, and taking me out of the uniform of the patient for a few minutes.

She, along with another best friend, gave my life a massive material boost with their purchase of a Nespresso machine as a gift for me. After months of being restricted to one half cup of weak coffee per day...well, the kidney brought me one type of heaven, this lovely coffee has brought me Nirvana.

One friend of more than a decade now did my lungs the wonderful favour of a spin way up high in the mountains, to fill my reborn body with the freshest air that Dublin has to offer.

Another best friend has stayed with me on various nights, particularly in the early days, just after my mother had gone back west, when my kidney was still a little scared of the dark.

And a best friend, who is way across the other side of the world, has sent flowers, and has gotten up extra early, to court the time difference that makes chatting difficult, and put a call through to me to see how I'm getting on.

There is, of course, a new friend now also, one who calls me after each of her clinic appointments, and whom I call after each of mine, to compare how our brother kidneys are getting on.

They say that friends are the family we choose for ourselves.

On this count, I am blessed.

Sunday, February 12, 2012

And we shall call him...

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?


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.

Saturday, February 4, 2012

The newness of me

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 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.

Saturday, January 21, 2012


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, 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".



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.

Sunday, January 8, 2012

A brighter side of me

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)