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 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.