What a difference a kidney makes
Four people describe how their lives have been transformed by receiving a kidney transplant
Chris Boustead, aged 41, from Sussex, received a kidney from an altruistic donor in 2011, after waiting more than three years
“My transplant operation gave me back the joy of life. I had got used to life on dialysis and thought I was getting on all right. I was surrounded by people in the same position and had become almost institutionalised.
“I didn’t think that getting a new kidney would make much difference. But without realising it, the whole of my life had become a struggle – a struggle to get up in the morning, to walk to the station, to get to work. And then three days a week I had to leave work at 4pm, to go to dialysis, and I would not get home until about 10.30.
“But instantly after the operation, I had much more energy. The doctors had warned me that it would take a few days for me to get my appetite back, but I was starving as soon as I woke up. The joy of food and the joy of life had come back.
“These days I bounce out of bed at 10 to 6, and am happy to do it. I am still enjoying the novelty of it.”
Chris’s kidney problems began in his 30s when he had a bad attack of gout. “I am missing an important enzyme but did not realise it. The attack of gout affected my kidneys, though I was not aware of that at the time.”
Then in November 2007 he was rushed to hospital with Legionnaire’s disease. “I nearly died, to be honest. I was unconscious for about 10 days.
“The episode knocked out my remaining kidney function.” After Chris recovered he had to go onto dialysis. He was on peritoneal dialysis for about three months, but it kept getting blocked, so he then went on to haemodialysis.
Three members of his family volunteered to donate a kidney to him, but each in turn was found to be unsuitable. His mother volunteered first, but she was found to have an irregularity of the blood vessels to her kidneys. Then his father came forward, but he had some kind of scarring on his kidneys.
Lastly his brother volunteered. He was an excellent match but was found to have an irregular heartbeat, for which he required prompt treatment.
Chris was pleased that the investigations had resulted in his brother’s condition being spotted and treated but was beginning to think that he was the unluckiest person in the world.
He was put on the waiting list for a kidney, and he did get one call about a deceased donor organ but was warned that he was the second choice for it, and it didn’t come to anything.
When he was offered a transplant from an altruistic donor he was delighted, for two reasons. It meant that he was given three weeks’ notice of the operation, which meant that he could plan the interruption to his work, as an accountant. Secondly he knew that a transplant from a live donor would be in excellent condition and was likely to last longer.
The operation went well. He was in hospital for only six days and was back at work after three weeks.
“I didn’t think that the operation would make that much difference, but the difference has been incredible,” he said.
Keith Parsons, 52, from Plymouth received a kidney from an altruistic kidney donor in 2009. Here he describes what a difference it made to his life.
“I’ll never forget the first time I ate liver and onions after my transplant. Nothing has ever tasted as good.” It was one of Keith’s favourite meals and one that he had not been allowed to eat when he was on dialysis. He was also able to eat bananas again, go to work regularly, do overtime, and cycle to work in half the time it took before the operation.
But most important of all was that it gave him back a normal family life.
“The transplant didn’t just turn round my life. It also turned round life for all my family,” said Keith, who has a wife, a 23-year-old daughter and a 17-year-old son, and a four-year-old grandson.
“Because I don’t have to go to dialysis three nights a week after work, I have much more of a social life with my family.
“My energy levels are also back to normal. I can cycle the eight miles to work in about 25 minutes instead of the 45 minutes it used to take. I have only taken two days off work in the 18 months since my operation, whereas before I had to take a lot of time off.”
Keith has become so fit since his operation that in the summer of 2010 he took part in the UK Transplant Games in Bath, and in 2011 he took part again, this time in Belfast.
“Last year, I took part in the 5k and 10k bike ride, in the 100 metres and 200 metres sprint and in the ball throwing event. I came second in three of the categories. But I have been training hard since then and hope to do even better this year.”
He has written twice to the person who donated his kidney to him, sending him letters through the kidney transplant co-ordinator, because he does not know his name or details.
“I can’t thank the guy enough. He has given me back my life,” Keith said.
Jim Fatah, aged 60, from Surrey, has received two transplants from deceased donors
Jim Fatah has had two transplants because of Henoch-Schönlein purpura disease, an inflammation of the blood vessels which damages the kidneys. His first lasted just under a year, but the second one has lasted more than 11 years and is still going strong.
“Having a kidney transplant was better than winning the lottery,” Jim says.
“I’d much rather have my transplant and feel healthy and well again than win the lottery.”
Although the first kidney that Jim received, in 1996, lasted less than a year, he was given another one in 1999, at the age of 48. The change that he felt was rapid. “When I came out of the anaesthetic I felt better almost right away and I remember having a smile on my face. It was wonderful.
“The fogginess I had when I was on dialysis went within a day or two.
“I spent about three weeks in hospital, and by the third week I was up and about walking. You then have to go through a convalescence period when you are back in hospital every day for check-ups.”
When Jim was on dialysis he met people who were not on the waiting list for a kidney and who were reconciled to being on dialysis. They looked forward to the sessions because they met other people in the same boat as themselves. They did not want a transplant, but Jim was never like that.
“I wanted my life back. I wanted to get back to work and go out with my friends again. My hopes have been fulfilled. It’s been almost 12 years since my last transplant.”
Paul Hinkins received a kidney in 2009, through the paired/pooled kidney transplant scheme, which was made possible when the law changed under the Human Tissue Act in 2006
Sometimes someone waiting for a kidney will know someone who is willing to donate one, but incompatibility in blood group or tissue type will mean that the donor’s kidney can’t be transplanted. The paired/pooled scheme is a national scheme into which donor-recipient pairs are registered to be matched up with one or two other such couples. Each transplant “exchange” involves four people, made up of two pairs, or six people, made up of three pairs. One person in each pair is waiting for a kidney transplant and the other wants to give their partner a kidney but is not a good enough match. He or she therefore volunteers to give a kidney to a member of a similar pair, in return for a kidney for his or her partner.
The pairs could be married couples, unmarried couples, two relatives or two friends.
Paul Hinkins, who received a kidney through the scheme, describes what a difference it made to his life.
After my first kidney transplant, which had been given to me by my wife, began to fail in 2008, and I was heading towards dialysis treatment, my mother-in-law decided to put herself forward as a possible donor. This was a humbling experience. I was not used to this kind of self-sacrifice, for my benefit.
Tests were carried out in the normal way for living donation, but as time went on it became clear that a direct donation was not going to be possible, because after my first transplant I had produced antibodies in my blood against my mother-in-law’s tissue type. This made us incompatible with each other. But as I had found before, the team at my transplant centre managed to pull a rabbit out of the hat and started to talk about the paired/pooled donor scheme. Yet another lifeline for me was appearing. I do not mind admitting that life on dialysis was something that I dreaded, and to this day my feelings remain the same. I had received my first kidney transplant before starting dialysis and so I had never experienced what it was like.
Once the paired/pooled scheme was explained, my initial question of “why would someone do this?” was replaced by the realisation that the scheme had enormous benefits. Four people would directly benefit from the process, and many other family members and friends would see someone they cared for return to a more normal life.
Further tests were performed before my details were put into the paired/pooled matching scheme. An anxious time ensued before the results were known, and on that initial run I was not matched. We all felt seriously disappointed, including the transplant team. It was a difficult time for me as I was between jobs and had to postpone starting dialysis until I had settled into a new job. The second run, approximately three months later, was the same story: no match. This was again a massive let-down, as I knew my wellbeing was deteriorating, and dialysis loomed. The positive side at this point was that I had joined a company that, as I was soon to find out, was very understanding of my plight and accommodated all the necessary visits to hospital without question.
I postponed dialysis as long as I could, against medical advice, for a number of reasons and subsequently suffered health-wise. In January 2009 the news we had all been waiting for came through: a pooled donor had been found! The relief and, dare I say it, the joy was incredible for all.
The time when I had to start dialysis came during February 2009, and, unfortunately for me, this period was fraught with further drama – a story for another time! But the knowledge that a transplant was coming was sustenance enough to get me through.
My transplantation took place in April 2009, and for three months everything was perfect. As for many patients living with a transplant, life has its challenges, and I have had some health problems associated with the medicines that I need to take to prevent rejection of my transplant. It has not all been plain sailing, and it can be a bit of a balancing act at times. Despite this, I have faith in the team looking after me, and I enjoy a full and active life.
Though the patient must still make many decisions to ensure that his or her family can cope and see the light at the end of the tunnel in the same way that the patient does, the paired/pooled donor scheme is a great innovation for kidney patients.