Personal Stories

Waiting for a kidney

Three people describe what it is like living with kidney failure and waiting for a transplant

Keith Parsons

Keith Parsons, aged 52, from Plymouth, received a kidney from an altruistic donor in 2009. Here he describes what it was like waiting for a kidney transplant

“I am someone who accepts whatever life brings along. So I did get used to being on dialysis,” says Keith.
“But there is no doubt that being dialysed three times a week does interfere with your life and your family’s life.”

Keith was diagnosed with polycystic kidney disease in 1995, at the age of 36, and was started on kidney dialysis in 2007, when he was 48.
He used to go to dialysis three times a week, after work. He would arrive at the hospital at about 5.30 and would usually be able to start dialysing sometime between 5.45 and 6.30. This would depend on the availability of the machine and how much work the nurse had to do putting other patients onto the machines before him. Eventually he learned how to prepare himself for dialysis, which speeded things up a bit.
He would be on the dialysis machine for four hours, finishing about 10.00 or 10.30.

One of Keith’s problems was that the dialysis sessions left him stimulated and exceptionally awake. “I would be buzzing and could not get to sleep for several hours, and that meant I did not get enough sleep.”

Being on dialysis also affected his diet. “I was not allowed to eat liver, which I loved, or bananas, which were also a favourite.” He had to eat a diet that was low in phosphorus and potassium. He could eat chicken and pasta and rice, which he liked, but he was only allowed to drink three quarters of a litre of liquid a day unless he was taking a lot of exercise, when that was increased to one and a half litres.

His energy levels were low. He found that it took him 45 minutes to cycle the eight miles to work, a journey that used to take more like 25 minutes. When he went for walks on the moors on a Saturday with a friend, they had to take frequent stops in order to conserve energy. He also had to give up playing 11-a-side football, which he loved, because of fears of being accidentally bruised by another player and damaging his already failing kidneys.

He was not allowed to sit in the sun, which he missed, and he also felt the cold, having to wear sweaters when his workmates were all in T-shirts. His complexion was also yellowish. “I used to call it my renal tan.”

His employers, the local council, were very understanding, but he didn’t like being unable to pull his weight in his job as a mason paviour, a job that involves paving, kerb laying, concrete repairs and highway construction. “I used to feel guilty if I had to have a sit down after 20 minutes or so.” He frequently had to take time off work, in one year taking almost 40% of the year off.

Keith’s transplant transformed his life. In the 18 months since the transplantation he has only had four days off work.

For details of Keith’s life after his transplant operation, see the section entitled “What a difference a kidney makes”.

Jim Fatah, aged 60, from Surrey, who received a kidney in 1999, describes what it was like waiting for a transplant

Jim Fatah 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 23-year-old 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 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, see the section entitled “What a difference a kidney makes”.

Lynette Gibbs

Lynnette Gibbs, aged 42, from Brookwood in Woking, has been waiting for a transplant since 2008, when her first transplant failed. In July 2011 she was still waiting.

Lynnette Gibbs was only 27 when, during her first pregnancy in 1996, doctors detected a problem with her kidneys.

“The problem with my kidneys meant I had to give up work, because it made me really ill. I lost a lot of weight and had to have regular check-ups – more than you would normally have when you are pregnant, but the problem did go away after I gave birth,” says Lynnette.

Lynnette had pre-eclampsia (dangerously raised blood pressure), with the result that she had to have her baby delivered early, at only 28 weeks of pregnancy. But her daughter survived and is now 14 years old.

“The kidney problem went away for about a year and a half after I gave birth, and then in 1998 I had to go on dialysis for a year before getting my transplant.”

The impact on her life was significant, but she adapted. “I didn’t find it that hard to adjust to life on dialysis. I just rolled with it and got on with it. It became part of my life. I was not working and I haven’t worked (as a home care assistant) since I had to give up when I was pregnant,” she says.

Lynnette received her kidney transplant in October 1999 when she was 30 years old, and it lasted nine years before it started to fail. She has been back on the waiting list for a kidney since 2008, and dialysis the second time around is similar to her first time on it, although she now attends a bigger dialysis unit.

Being on dialysis has affected Lynnette’s diet a lot. She says: “I have been advised to come off some foods. I’ve been told to cut down on my potassium and phosphates, and I have to boil all my vegetables. There are certain things I can’t have, like jacket potatoes, chips, and mushrooms. I can have a little amount of tomato and cheese.

“I am on a low fat diet anyway because I am trying to lose weight. Another thing is that my fluid intake has been restricted. I can’t drink as much as I used to, and I’m only having up to a litre of fluid a day. I am not allowed coffee because that’s very high in potassium.”

Functioning kidneys get rid of potassium, but the mineral can build up to a high level if your kidneys aren’t working properly.

“It has been difficult adjusting, particularly the fluid, because you get thirsty,” she says.

Holidays have also been affected. “I don’t go on holiday because it is not worth going away for a week when I am going to spend 12 hours of that week on a machine, plus having to recover from it when I feel absolutely awful after dialysis and washed out,” she says. “It is also a hassle to arrange dialysis in another country or even here in another unit.” As a result, Lynnette has not been on holiday for almost four years.

“We go out for days during the school holidays, but I am not as fit as I used to be and I get a bit tired. You feel generally run down. I have never had a big social life, but I do go out if I am invited somewhere, and when I do I have to watch what I drink and eat.”

Lynnette originally wanted to have a second child before she found out she had kidney disease, but that will not happen now, as she knows pregnancy could be complicated by her condition.

Lynnette is optimistic but realistic. “Life on dialysis is restricted, but if you are willing to roll with it, it’s okay. “I would really support the idea of people coming forward to give a kidney altruistically. “I want my life back, and I want to not have to work around dialysis. It becomes the main focus of your life, along with your family.”