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James Holdstock donated a kidney early in 2013 as part of a Paired Donation Scheme.

Here is his story:

James and Schmauzer

Schmauzer and I were introduced in March – I was in Guy’s Hospital, having just donated my left kidney and Schmauzer was a gift from my wife and mother-in-law.

I am part of a ‘Paired Donation Scheme’. The way that it works is that people with two healthy kidneys can quite happily donate one without any long-term ill effects. At the same time, someone else donates a healthy kidney and they are effectively ‘swapped’, meaning that both your loved one and their loved one gets a healthy, working kidney. Not many people know about kidney swaps or altruistic organ donating, but it’s an incredibly important procedure that can drastically improve the quality of life for the ones you care about the most.

Of course, I was scared. I knew that the recovery would take a while, but the hospital staff were excellent. They talked me through everything that I would need to do to make sure I was well prepared physically, mentally and emotionally. My anxiety though was completely outweighed by the results. Not only did my loved one have a working kidney, but my donation had saved someone else from dialysis (which can take up days every week) and made things easier for them and the people they care about.

Once I’d recovered I wanted to continue to raise awareness and funds for kidney research whilst challenging myself in the process.

Schmauzer, myself and my friend, Anthony, completed a physical challenge to prove that you can lead an active healthy life after kidney donation.

We completed the ’24 Peak Challenge’ on October 11 and 12, 2013. This meant ascending 24 Lake District Peaks in a 24-hour period. Each peak is over 2,400 feet high and we did this over 2 grueling days!

Tony Burgess talks about his decision to donate a kidney to a stranger as a Christmas gift 2012.

Helen’s husband was initially horrified when he heard about her plans to donate a kidney.

“The whole thing has been life-enriching beyond anything that I could ever describe. Of all the things I have done in my life, this one has been the happiest. I cannot recommend it strongly enough.”

Sanjiv donated a kidney at the Royal Free Hospital in London.

Viv is a graphic designer who lives in Cornwall. She donated a kidney in 2011.


 

Professional jockey, racing commentator and altruistic kidney donor.

“No regrets at all. No second thoughts. This is something that ought to be done by more people.”

Joanna donated a kidney in 2012. “If I had three kidneys, I’d do it again,” she says.

Mary Dixon first started thinking about donating a kidney 21 years ago, when she was training to be a nurse.

Julie received a card from her recipient, which she looks at nearly every day.

“I can’t say I enjoyed the process, but I’m really glad I did it.”

Penny initially thought about donating eggs, but eventually decided to donate a kidney.

Clare wanted to help her recipient to “restart” her life.

“It was enormous fun.”

Natalia carries a picture of the kidney that she donated on her phone, and it’s also on her Facebook page.

Barbara Ryder donated a kidney in 2007. She was the UK’s second altruistic donor.

Nicholas, who is 83, donated a kidney in 2012. He is the UK’s oldest altruistic donor.

David is a retired civil servant and magistrate who lives in Devon.

Kay was the UK’s first altruistic kidney donor.

 

Maggie donated a kidney in 2007.

Philippa and her daughter have both donated kidneys altruistically.

Polly is a retired nurse who worked on a kidney unit.

Mini Caption Image

Luc donated a kidney in the summer of 2011, when he was 25.

I’m what is known as an altruistic kidney donor – that’s someone who donates a kidney to save or prolong a stranger’s life. I’ve been asked to say a few words about my experience.

Before I get into the joys of morphine and hours spent watching DVD box sets I’d like to say a little bit about altruistic kidney donation.

Altruistic donation was only legalised in 2006.

For the first twelve months after it was legalised no one came forward. Then in 2007-08 ten people did. The next year, 15 did, then 23 and last year, 2010-2011 a total of 40 people did. I’m clearly getting in on an emerging trend (these statistics are from Google so don’t quote me on them!)

Unfortunately, it’s still going to take us altruistic donors a long time to meet the needs of the 8,000 people who are currently on the waiting list for a kidney.

If any of you here today are considering an altruistic donation then you would joining a very small group of people. I hope my short presentation – or at least the fact that I am standing here healthy and well enough to give it – is of some comfort to you.

For the rest of you, I’m going to try to answer the obvious question. Why put yourself at risk for someone you have never met?

I’m afraid I don’t have a simple answer to that. Heaven knows I’ve been asked about it enough by friends and family. My answer varies depending on who I am talking with and still today I’m thinking of new reasons why I am glad I have done it.

Although I’m not especially religious, I have sometimes attempted to justify it on a religious basis. I guess the Buddhists would call it good karma, the Christians might call it “being a good Samaritan” and the Talmud talks of “he who saves a single life, saves the entire world.”

But I think for me it is more than this. If I was in dire need of a kidney, would I accept one from a stranger? Of course I would. I suspect the majority of people would do the same.
It is a shame that so many people would be willing to take but not to give, when they are capable of doing so.

I’m lucky to be in a healthy state and have no history of kidney disease. Right now, I’m in no need of my spare kidney. There are 8,000 people who aren’t so lucky and may die if they do not receive one. When you weigh this up, what are a few weeks of discomfort in exchange for giving someone the chance to live?

“Six months after I donated I was in the best shape of my life. People don’t realise how little difference it makes to have one kidney.”

It’s now been just over three months since I donated my left kidney. I was out of action physically for a while, but I am now back to full health and other than a couple of scars, having one kidney less hasn’t affected me whatsoever. I’m doing sport again and will be running a 10k race for charity in November. I feel exactly the same as I did beforehand. I’d like to think the person who now has my left kidney feels a lot better.

The total process of putting my self forward and going through the screening took about 18 months. I must give credit to the NHS team for the way they looked after me, everything from informing me of the risks to talking about the recovery process.

The actual operation went very smoothly and following this I had a glorious 4 day, 5*, all-inclusive stay on the kidney ward receiving around the clock care from some wonderful nurses. I thoroughly enjoyed my morphine drip whilst it was available, but it was not necessary after the first day in recovery.

Whilst in the ward I received great news that the operation for the recipient had gone very well and they were recovering fast. This was heart warming news and despite my somewhat groggy state I felt euphoric.
I was discharged from hospital after 4 days and this was arguably the hardest part.
The weeks that followed I received amazing support from my family and friends as I slowly got back to my normal self, I had to pop back on occasion for various bits but ultimately my dealings with the Kidney team at Guy’s had come to an end.

I met some truly wonderful people during my time donating a kidney, both other patients and NHS staff.

nicholas crace photo

Nicholas Crace is a former charity director from Hampshire, gave a kidney to a stranger in spring, 2012. He was, at the time, the oldest person in the UK to have done so at aged 83 – although there have now been older donors.

Nicholas Crace had good health and no dependents when his wife, Brigid, died in the summer of 2011. Nicholas was at first kept busy sorting out her affairs. He had looked after Brigid, with the help of carers, since she had had a stroke in 2005 and this had kept him fully occupied. So he found having plenty of time but little to fill it with, an unfamiliar situation. At the age of 83 he found appropriate voluntary work hard to find, and enrolling as a volunteer driver for the local hospice solved only part of the problem.
All his life he had been a blood donor (57 donations) and he thought of offering to give bone marrow, but was too old to be accepted. So his thoughts turned to the possibility of giving one of his kidneys.
“I cannot remember quite what put the idea of being a living kidney donor into my mind,” he says, “but in September 2011 I thought that it might be worth investigating. After all, I was in good health, had no dependents and had plenty of time at my disposal. A call to the NHS Organ Donor Centre gave me the location of the nearest Renal Transplant Centres, one at Portsmouth and the other at Oxford. I decided to contact Portsmouth (Queen Alexandra Hospital).”

Tests

Donating a kidney is not simple. The health of the potential donor has to be thoroughly examined, as well as the wellbeing and anatomy of the kidney, and this involves a number of tests. During the six months after he put his name forward he made fourteen visits to the hospital for tests and examinations, each involving a round trip of nearly 100 miles. Although the tests are painless and unstressful, each one could have revealed a reason for the kidney donation being unacceptable, which led to his increasing anxiety as each test was successfully concluded. “I would have been very disappointed if I had been turned down,” says Nicholas. “I was ideally placed to be a donor after the hospital had established that I was fit and had excellent kidneys. One can live perfectly happily with only one kidney – in fact some people are born with only one.”

“A new lease of life”

“We know from numerous studies”, says Consultant Surgeon Sam Dutta, who performed the operation, “that a living donor kidney performs better [than one from a deceased donor], works quicker and lasts longer; all the detrimental factors related to being on dialysis, leading to early death because of heart problems, are completely taken care of by a good functioning kidney. An altruistic donor coming forward is an amazing thing for us. The recipient just gets a new lease of life”

“An easy decision”

“I couldn’t have lived with myself with the knowledge that I had had the chance of changing someone’s life and turned it down,” said Nicholas. “Giving a small part of me to someone else will make little difference to my life but a huge difference to someone else’s – it was an easy decision for me to make. I was lucky to be in a position to help someone else less fortunate than myself.”

Paul Hinkins received a kidney 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 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.

keith parsons photo

Keith, from Plymouth received a kidney from an altruistic kidney donor and 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.

Chris Boustead Photo

Chris received a kidney from an altruistic donor 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 4.00pm,  to go to dialysis, and I would not get home until about 10.30pm.

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 6.00am,  and am happy to do it. I am still enjoying the novelty of it.

My kidney problems began in my 30s when I 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.

In November 2007 I 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.

Jim Fatah photo

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.