Tuesday, November 30, 2010

It's beginning to look a lot like bah humbug

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 grĂ¡ 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.

Sunday, November 14, 2010

In favour of omens

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”.

Sunday, November 7, 2010

In Memory Of

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.

Wednesday, November 3, 2010

Transplant's Next Top Model

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.