Dialysis kept me alive for two years

The Irish Times - Tuesday, April 3, 2012
Dialysis kept me alive for two years
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REGINA HENNELLY

MY HEALTH EXPERIENCE: A transplant was the only option when my kidneys failed

DOZENS OF days have passed, nights too, yet I am still struggling to fully grasp the enormous change in me, and the potential that now lies ahead in a future that is not tainted by worsening illness.

I am struggling also to appreciate the unique act of kindness that granted me a new life. But this is the story, and the universal experience, of organ donation.

For more than 2½ years, I underwent dialysis treatment overnight, every night, as a means of keeping myself alive. My kidneys failed when I was 27 as a result of a form of chronic kidney disease, called IgA Nephropathy.

Kidney disease is a silent, largely invisible illness. While it kills off vital organs, it can leave your outward appearance almost untouched, making it difficult for other people – family, friends and colleagues – to comprehend and not underestimate how ill you really are.

I endured my years on dialysis as best I could, but there was a feeling of life suspended, of everything having been put on pause. This was especially frustrating because of the age I was, being in my 20s, watching my friends all moving forward, while it felt like I was stood still, waiting on a phone call.

Knowing your name is on the transplant list grants you some comfort, but as months and years pass, you start to feel forgotten. With no end to dialysis in sight, it is easy to fall prey to the desperation and gloominess that can envelope you when it seems like you will be sick forever.

My condition was deteriorating rapidly in recent months. The form of dialysis I was on – peritoneal dialysis – was not working as it should. I was obediently sticking to my renal diet and treatment regime and hooking up to a dialysis machine in my apartment by means of a tube in my tummy each night. In the morning, my weight was still up, my face was puffy, my blood pressure was higher than it should be.

While I initially underwent eight hours of dialysis each night, this was increased to nine hours before Christmas. The extra time made little difference though, and as I faced into this new year – my third on dialysis – there was the suggestion that 10 hours nightly was needed.

I saw no way of making this work, of fitting any kind of a normal working or social life around demands on my time that would total 70 hours of dialysis a week.

But thankfully and mercifully, I was spared those 10-hour stints, just by the skin of my teeth. On Friday morning,January 13th this year, at 6.36am, the phone finally rang.

I had always expected an instant surge of terror when that call from Beaumont Hospital came, the dread any human should feel knowing they are about to be opened up on an operating table. But there was no fear that morning, only a need in me to be well again that outweighed any nerves.

In any event, there is little time for fretting with a transplant. By lunchtime, I was being wheeled into theatre. Four hours later, I was awoken in recovery. I didn’t need to ask had everything gone okay. I knew. I could feel instantly that I was better. The perpetual hangover that torments a body and brain full of toxins had finally lifted.

People who are not familiar with kidney transplants have expressed amazement at the rapidity of the process. I have certainly recovered well and quickly. I was up and out of bed the day after my surgery. I was out of hospital within a week. At this point, almost three months on, I am back walking and even jogging a bit. I have returned to work.

But make no mistake, each and every transplant is a medical miracle. There is a long and complicated chain of events and circumstances that need to align correctly for you to receive that blessed call, and for an organ to be successfully harvested from one body and placed in another.

Above all else, at the source of each transplant story is a tragedy, and a loss of life. This is something that each person awaiting a new organ has to consider, and work through, each in our own individual way.

My thoughts on my donor have travelled from feelings of guilt, to feelings of curiosity about who they were, to something now approaching peace, where I have concluded that in an unfathomable world where so many are taken too young, we can only hope that occasionally tragedy will be intertwined with hope.

There is a sense of euphoria in the immediate aftermath of a transplant. For me, there was the pleasure of those first few nights of falling asleep without being attached to a machine. There was such joy also for my family and friends. Delight in the little things, such as eating chocolate again and not choosing clothes on the basis of the top or dress that would best disguise the tube that occupied my stomach for so long, that the outline of it is still imprinted on my skin.

The running joke question when I’m trying on clothes now is: “Does my kidney look big in this?”

People may not realise that when a new kidney is transplanted, your surgeon has to put it wherever it will fit – which can be tricky when you’re a female with a small frame.

My donated kidney is in my tummy, just underneath and to the right of my belly button. I can feel it quite clearly under my skin, and it does stick out a little. Not surprisingly, I have no problem with this, it is no imposition at all. I am, in fact, quite proud of it and I am in danger of being arrested for indecent exposure, such is my delight in flashing my scar at anyone who expresses even a passing interest in my transplant. This kidney is my new best friend.

Now that the pain of the surgery has passed, I can glimpse what my future will be like and the view is glorious. The world looks different to me now, like it has been opened up to me again.

Travel is no longer a problem, eating out is no longer a process of eliminating all the forbidden options on the menu and my career can get back on track.

It would be wrong though to say there haven’t been occasional shaky moments too. In the initial weeks, I was extremely anxious that something would go wrong. Having banked everything on this surgery, and having waited so long for it, my desperation for its success did drive me to a hyper sense of caution and concern. This is common in the transplant community. For so long, we know how to be sick, you have to re-educate yourself on how to be well.

All transplant recipients are given the opportunity to write an anonymous letter to their donor family, to thank them for that decision they made on what I know must have been the worst day of their lives.

I will write my letter in the coming weeks and I will write a further note every year. Words will never be enough, but I can only offer them hundreds of letters and almost a thousand thank yous – one for each of the nights I spent on dialysis.

http://www.irishtimes.com/newspaper/health/2012/0403/1224314289199.html