THE SCAR ON my tummy is stinging a little today. It is fresh, and it is a little unsightly, but do not pity me, because the story behind it is miraculous, and the victim that is the source of the six-inch incision is someone I will never know.
It is just over two weeks ago since I received the call from Beaumont Hospital to say they believed they had a kidney for me. I had been waiting for the phone to ring with that news for more than two and a half years – an interminable period during which I underwent dialysis each and every night.
I was diagnosed at the age of 26 with a form of chronic kidney disease called IgA Nephropathy. It was the worst news of my life, and it came out of nowhere, as all dream-shattering revelations are apt to do. A routine check-up with my GP revealed high blood pressure, which led to some tests, which led to panic. My kidney function was severely impaired.
It changed everything, and it changed nothing. Medication was prescribed, a tube was inserted in my tummy, and I set into a series of groundhog days, of hooking up to a machine for eight hours while I slept.
Throughout this time, there was one hope which sustained me – the hope that eventually, a grief-stricken family in some hospital waiting room would find the strength in their darkest hour to agree to have their loved one’s organs donated, and that I may be a match for a donated kidney.
Waiting for a transplant is a strange experience. Nothing really does change. You can’t actively wait for something to happen, especially when you know neither the day nor the date, and I continued with a routine as best I could, working as much as my broken body would permit, socialising, grocery-shopping, getting by, rather than getting on.
But in recent months, the wait had become more difficult. My condition was deteriorating, because a machine will never manage to sustain the body in the way a working kidney can. I looked worse, I felt worse, and there was talk of increasing my nightly hours on dialysis to ten.
The call, when it came at last then at 6.30am on that fateful day, did not induce any of the fear you may expect. It only gave me a surge of nervous excitement, that I may finally be released from the infernal routine of a treatment that had chipped away at my very existence for the latter part of my precious 20s.
A bag with all I would need for a stay in hospital had been packed and re-packed several times in the years since I had been declared ‘active’ on the transplant list. My friends often joked that the rush to the hospital for a transplant was similar to that of a woman in labour, and my reply was always that the one difference was I would return home to better nights’ sleep and a renewed freedom.
A taxi was called, and one of my best friends who lives nearby made the journey with me. Our conversations over the years had often turned to speculating on what that trip across the city would be like, would we be laughing or crying, would we tell the taxi driver the importance of this fare, would we be able to talk at all.
I was quiet in the car. All of us awaiting transplant are reminded time and again that getting ‘the call’ is never a guarantee. There are final checks to be made on your arrival at hospital, and the surgeon can decide not to go through with it if he is not entirely happy with the match.
This warning was to the forefront of my mind. After such a long wait, my optimism was dormant, and there was an inability to grasp that this may actually come to pass.
On arrival at the hospital, there was the frantic search for the right ward, there were blood tests, and then there was the last stretch of this long process. The light at the end of the tunnel was suddenly visible, and one screen of my blood in the lab was the final hurdle.
The news was good when it was delivered. The transplant would go ahead. I was told to call my family, that I would be brought down to surgery in about 10 minutes.
My brother was already on his way from Mayo, but he wasn’t going to make it in time to see me off to the blessed hands of the surgical team. I phoned my mother. I told her I wasn’t scared, and if she was, she should just remember how awful I looked across the Christmas dinner table a few short weeks ago, and how much I needed this.
When I was woken in recovery, I did not need to ask how the operation had gone. I knew. On opening my eyes, the dialysis fog that had hung over every waking moment for so long had finally lifted. I can only describe it as waking from a 100-year sleep, or two and half years of hungover mornings.
I was discharged from hospital one week later, and now at home, there is the slow process of getting to know this new body. There is anxiety about the possibility of rejecting the organ – a threat that will hang over me always, but which looms larger in these initial weeks. But there is such joy, not just for me, but for all who love me. The transformation in how I feel is truly the closest thing to a miracle I have ever known.
In a few months’ time I will write an anonymous letter to the family of my donor. I will never be granted details of who that person was in life, or how they came to die, but that man or woman has been my saviour. They have made it possible for me to live again, rather than just exist. There is no greater gift anyone could ask for, no greater gift one can give.
For an organ donor card, please freetext the word ‘DONOR’ to 50050. To follow Regina’s story, log on to this-limbo.blogspot.com.
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