When I first went on dialysis, in 1995, I was in shock. Though I had been building up to it for at least five years, the reality of the needles, the machine and the time it took from my life was almost overwhelming. It was for Julie too: suddenly our life together was short-changed.
Everyone in this emotional cauldron feels the same, and like everyone, we cast around looking for any way we could make it all go away.
The obvious candidate was a kidney transplant. When we looked into it, we quickly discovered the waiting list and that waiting time was measured in years, not months. We also discovered the living donor scheme, where a generous friend or relative would donate one of their healthy kidneys to their friend or relative with kidney failure.
This certainly represented a way out, but there was no way I wanted to put a perfectly healthy loved one through the trauma of removing a kidney, and face the danger of joining me on dialysis if their remaining kidney failed.
But Julie felt differently: she felt that if she donated a kidney we could be whole again as a couple and have our life together returned to us. So she offered me one of her kidneys.
After a while, I agreed. After all, it seemed a common sense way to return to normal. It was blindingly clear to us that a transplant was preferable to dialysis.
So we went through the live donor process. We talked with my nephrologist; we were each interviewed twice by the transplant psychologist; we attended transplant education sessions with other couples going through the process. We listened to people who had transplants (all of whom were better off because of it).
Talking to my nephrologist two messages were designed to temper our enthusiasm:
- Firstly, a transplant was not a cure, but simply another method of treatment. I still faced a lifetime of anti-rejection drugs and their side effects. “So what?” I thought that’s better than 15 plus hours per week on dialysis for the rest of my life.
- Secondly, not all transplants were a success. I think the percentage was that around 85% of transplanted kidneys would still be working in five years. OK, even five years sounds good to me.
After all, all those other people had transplants that had changed their lives, so why not us?
Within six months, we were ready. We arranged for friends to mind our three children, were admitted, slept in beds next to each other and the following morning, were wheeled into theatre. Next, I awoke after three hours of anaesthetic blackness. Julie was already back in the ward.
The first thing I felt was that my teeth were back to normal. For the previous six months, my teeth had become progressively more sensitive to cold. Even a small sip of cold water would make my teeth ache like fury. It would build up slowly and last about an hour. I have rarely had such pain, and no amount of pain relief had any effect. I was completely disabled. Dentists could find nothing. It got to a point where I was seriously considering having all my teeth removed if that would make the pain go away. Then I had the transplant, and I knew that my teeth had returned to normal as soon as I awoke. Obviously, it was caused by the kidney failure, but I have never discovered why. After the transplant, I didn’t care.
I was sent to an isolation ward (the transplant drugs killed off most of my immune system, so the isolation was to protect me, not the rest of the ward) and several litres fluid were pumped into me to put pressure on the new kidney to get started. I blew up like a balloon full of water and felt like one too. I had a catheter running from my bladder to drain my urine as it was created. And I had a regimen of anti-rejection drugs that would have dropped a gorilla.
Gradually the kidney began producing urine, and after a couple of days, everything looked on track. Unfortunately, on the third day I had a large rejection episode. The urine slowed and I felt lousy. I was given new anti-rejection drugs, which made me worse. The rejection slowed. This happened several times. Each time the rejection damaged the kidney.
I stayed in the ward for about a month, went home, then came back with more rejection. I had three kidney biopsies (where they push a little bitey needle through the abdomen to the kidney and take a small bite, which is then examined for signs of rejection). My kidney got and remained quite sore (and was especially sensitive to biopsies!). This surprised me since it wasn’t part of me, it was just connected to me. But presumably, there are nerve endings connected as well.
I had a large number of tests, unexpected bleeds and I was very weak, Julie was worried that I would not get through. I was too sick to care.
Eventually, after three months the kidney was so painful and I was so sick that I was taken back to theatre and it was removed. Julie and I asked to see it, to say our goodbyes. They brought it to us in a polystyrene box. It was black, shrivelled and rocky. There were tears.
So ended the first transplant. There was one upside. My teeth were (and touch wood) they will remain pain-free and normal. That was my big benefit from Julie’s kidney.
I returned to dialysis, not happy to be there, but relieved that the ordeal was over. Gradually I recovered, and I settled into the BigD routine and returned to work. After about a year, I was well enough to travel and start living again. But I decided that I would not line up for another transplant for quite a while, if ever.
After about five years, I had heard that transplant techniques and technology had improved, so I decided that I would try again, and went back on the transplant list. In July 2005, ten years after the first transplant, I got a call to say that there was a deceased donor kidney available for me, and should I choose to accept it, I must be at the hospital by 6pm that day.
The following morning I was wheeled into theatre to start the process again.
Unfortunately, within a day the rejection started again. So did the medical responses: drugs, drugs and more drugs, tests and biopsies. I was there another month. When I got home I caught some nasty bug and went straight back. More drugs and treatments. For some reason, I lost the sight of one eye. I was weak and fading again. Julie was there every day and again worried that I would not make it. But I did.
The new kidney was again damaged by the rejection and it lasted for only three years. But I am very grateful for those years. Julie made sure we did things while the sun shone. We travelled and generally enjoyed our freedom. That was the promise of the transplant, and it delivered.
In 2008, I went back on the BigD and again settled into a routine. It took a year or so to get well again. Now I dialyse five times a week. It keeps me fit and gives me the rest of each day to live life just like any other normal healthy person.
Every now and then someone asks me: Is a transplant preferable to dialysis? Would you have another transplant? My answer is no. At least not yet. I am well and stable and my BigD routine works for me. For me, the risk is not worth it.
Maybe when medical science can offer a perfect match (possibly grown from my own stem cells) or if a new miracle technique appears that needs no anti-rejection drugs. But not yet.
Why am I writing this? Because I don’t know if it would have affected our decision, but maybe some people would like to read it before making theirs.