Jim, from Surrey, describes what it was like waiting for a transplant.
Jim had to have a kidney transplant because of a disease called Henoch-Schönlein purpura (inflammation of the blood vessels), which he developed in his late 30s. In fact, he has had two transplants, because the first one failed after less than a year. Here Jim describes what it was like being on dialysis.
“I wasn’t able to lead a normal life at all. I was always tired and felt sick all the time. I used to go to my local hospital for dialysis three times a week.” He used to ski, sail and do a lot of walking before becoming ill, but gave up those activities after he went onto dialysis.
“It also affects your working life a lot. You can’t work properly because your brain is in a fog. I never felt right. As soon as I started on dialysis, I realised that I had to reduce my working hours.”
Jim was lucky because he runs his own software company (JFA Systems), so he could choose what hours he worked. But his illness also affected his diet. “You are not allowed to eat potassium, and almost all fresh fruit and vegetables contain potassium. It was quite unhealthy.
“You can have potatoes and meat, but only in limited quantities, because you have to have a low protein diet as your kidneys aren’t able to process too much protein.
“You lose your appetite, you can’t drink [alcohol], and you don’t have energy to go out walking or do anything. Your brain doesn’t work so you don’t have an interest in anything.”
Jim, who was married and has a daughter, thought the illness was instrumental in his divorce. “My ex-wife couldn’t handle the illness. She had a thing about illness and didn’t like it. She said to me once that she could possibly have handled it if I was missing an arm or if I had something that was very obvious, but just looking like a whole human being, yet not being one, was difficult.”
He managed to go on holiday occasionally, including a holiday to a Greek island, but getting dialysis there was a problem. “I pre-booked two dialysis sessions for the week, thinking that I could get away with just two sessions instead of the usual three a week in the UK.
“But I didn’t get away with it. The night before my second dialysis, I was retching and throwing up in the night and was violently ill. Luckily I didn’t conk out, but I was really quite badly ill. The next day I managed to get dialysed.”
“That was quite an experience. The Greek hospital was quite different to those in the UK. I found the hospital not to be particularly clean. And normally in the UK a nurse comes in and you get a small injection as a pain killer because the needles that they insert into your veins for dialysis are very thick.
“But in the Greek hospital they didn’t bother with that and just whacked the needle in. It is very much more rough and ready, but they did the dialysis and it worked.
“That was the only time I had a dialysis experience abroad, and I decided it was not worth doing that again.”
For details of Jim’s life after his transplant operation, read about the change a kidney made for Jim.