I had my three-monthly appointment with my nephrologist on Tuesday. Unlike many of the previous times I have sat in that chair, things seem to be going along OK. My phosphate and calcium are vaguely under control; my haemoglobin is good, weight control, dialysis adequacy, blood pressure all on course. And at a personal level, most days I feel about 4 out of 5 (five being the best) on my Life On Dialysis Wellbeing Scale.
Nothing to worry about; nothing to fix: steady as she goes.
So, after some pleasant chit-chat, feeling pretty pleased with myself, I rose from the chair, to make for the door.
“There’s just one thing.”
(Don’t you hate that?) Oh? What thing?
You have been back on dialysis five years now. Your transplant gave up the ghost in 2008 and you had the kidney out in 2010.
Its time you thought about another transplant. You turned 60 last August. Once you are on the transplant list, it may take 5 years to get a kidney. If you keep putting it off, your age may become a factor in being selected to have one.
Also, though you feel well, dialysis doesn’t clean the blood as well as a kidney. It leaves some toxins and harmful molecules behind that accumulate after five or more years and gradually wear you down. Bones become brittle, skin gets thinner, muscles take longer to respond to exercise; that kind of thing.
You don’t have to do it now, but you should think seriously about going back on the transplant list.
My stomach fell to my bowels, and they turned to water.
Transplants and I don’t seem to get on. My first, from Julie, was massively rejected at the outset and failed after three months. The doctors fought heroically, using large doses of old and new drugs that made me sicker than I had ever been. I spent days pumped full of fluid that had nowhere to go, staring at the ceiling without a thought in my head. I had bleeds in scary places, examinations via every orifice, biopsies galore. Finally I went back to theatre and the dead and toxic kidney was removed.
It took me a year to recover.
The second transplant, 10 years later, was a very similar ride. Rejection, more drugs, more tests, biopsies, bloods, unexpected unpleasant things. During the transplant operation, the surgeon cut some nerves that removed most touch and feel sensation from my left foot. With no immune system to speak of I caught many bugs, including one that attacks the brain. More drugs fought it off, but not before I lost the sight of my left eye. Eventually the kidney was stabilised and I went home. But damaged by the rejection episodes, it limped along for three years. Then it failed and I returned gratefully to dialysis.
Both transplants were tough for me, but they were diabolical for Julie and our kids.
So I reminded my nephrologist of the many reasons why we are both quite shy of another transplant.
I know, he said, but the fact remains that statistically, people live longer with a transplant that they do on dialysis.
All statistics have outliers that defy the trend. Maybe I can be one of them?
Maybe. That’s a judgement for you to make. Besides, you have a choice when the kidney is offered to you. If it’s not a really good match, don’t take it. Hold out for a better match.
Julie and I discussed it that night.
She’s as nervous as I am, but thinks I should go back on the list and be very picky about the kidney. It makes sense to stay in the game, especially with that safety valve.
I think she’s right, but I still dread the day I’m back on that trolley being wheeled into theatre. And waking up with a body full of fluid trying to kick start the kidney. And the hospital routine, smells and tastes. And sleeping alone.
But I’ll start the process. I’ll have plenty of time to get used to the idea.
Maybe it will work out OK.