大象传媒

To find out more about Kidney Research UK please go to:

Or write to: Kidney Research UK, Nene Hall, Peterborough Business Park, Lynch Wood, Peterborough, Cambridgeshire PE2 6FZ

Or call: 0300 303 1100

My Dad鈥檚 never been one to complain about being unwell. So when he was taken to hospital with kidney failure it came as a real shock. I knew it had to be serious.

Dad had known about his kidney disease for quite some time, he just chose not to tell me so I wouldn鈥檛 worry. And last Christmas he became one of the 27,000 other people in the UK currently on dialysis.

My dad relies on a machine just to keep him alive.

Kidney Research UK, is a charity close to my heart. A charity that funds lifesaving research into the causes, treatments and hopefully, one day, a cure for kidney disease.

This 大象传媒 Lifeline appeal will help us continue vital research into both increasing the number of kidneys available for transplantation and improving the lives of around three million people in the UK currently at risk of kidney disease.

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Three million people in the UK are at risk of kidney disease and the effects can be catastrophic. There is currently no cure, only life prolonging treatments, and while 6,000 people on the transplant list are waiting for a kidney, around 3,000 transplants take place each year.

For those waiting on dialysis, sometimes for years, life is on hold. And a transplant is their only hope for a 鈥榥ormal鈥� life.

However, a fifth of all donated kidneys are deemed unsuitable for transplant due to damage.

Kidney Research UK is the largest charity dedicated to funding research into kidney disease and accelerating research into improving transplantation.

Last year, Kidney Research UK was able to fund nearly 60 research & innovation projects thanks to the generosity of our supporters. But each year we have to turn away more than half of the potential research proposals we should be supporting due to lack of funding.

One of these potential projects could be the breakthrough we are searching for.

It鈥檚 simple, kidney disease kills鈥� but hopefully the stories in this 大象传媒 Lifeline Appeal will inspire you to help save more lives.

Did you know?

• 90% of the people on the transplant waiting list in the UK are waiting for a kidney.
• 1 million people in the UK suffer from kidney disease but are completely unaware they have it.
• 64% of people in the UK think that kidney disease can be cured 鈥� it can鈥檛!
• 1 person dies every day waiting for a kidney transplant.
• Kidney disease can affect anyone at any age.

For more information, go to their website聽, like on聽, follow on聽.

Deborah Bakewell is a wife, mother and step-grandmother in her late 50s. Kidney disease runs in her family, her mum, grandmother and nephew all had the disease. Deborah was just 23 when she was diagnosed with polycystic kidney disease (PKD). It is a condition that causes small fluid-filled cysts to form in the kidneys. The cysts enlarge, forming balloon-like swellings that gradually replace normal kidney tissue and reduce kidney function. This can cause kidney failure and death at any age.

Deborah said, 鈥淚 was in my mid 20s when I was diagnosed with PKD but it didn鈥檛 really begin to affect me until my 40s.

You think that in the bloom of your youth it鈥檚 never going to happen to you and it all seems very far off. I had moved out and had married before my mum was actually diagnosed and starting to dialyse so I didn鈥檛 recognise what she had to cope with.鈥�

When Deborah started to feel the effects of kidney disease, she started to explore her options to improve her quality of life.

She said, 鈥淎ll of a sudden my condition started to really catch up with me. I was working full time and had no energy. I was continually having to rest and it鈥檚 quite a shock that all of a sudden you鈥檝e got to change your lifestyle abruptly because of something that is going to slow you down and potentially kill you.鈥�

Deborah鈥檚 husband volunteered to be tested as a living donor but he had high blood pressure issues and couldn鈥檛 proceed. Deborah鈥檚 only option was to start dialysis.

This was then an essential but temporary measure for Deborah.

She said, 鈥淚 felt a lot better on dialysis but it鈥檚 not a cure, it鈥檚 just a way of getting through the day.听I was dialysing nine hours a night for seven nights a week. This meant I was in bed at 7.30pm, connected to a machine and I would be stuck there for the rest of the night. It was frustrating being held to ransom by a dialysis machine."

Deborah joined the 6,000 other people on the transplant list waiting for a donor kidney to become available. She knew the sad statistics: that only 3,000 operations are carried out each year, and that every day, one person dies waiting for a new kidney.

She says, 鈥淲hen I was on the transplant list I was very worried about the shortage of transplant kidneys. The shortage worried me so much that I thought I would never ever get a kidney transplant and have the opportunity to have a normal life.鈥�

Deborah spent 3 years on dialysis before she finally got the call she had always hoped for, she was going to have a transplant. Deborah was the first person in the world to be given a kidney revived using a new technique called normothermic perfusion. Professor Mike Nicholson and his team at Leicester General Hospital developed this process with funding from Kidney Research UK.

In this new approach, fresh blood is pumped through the donor kidney before the transplant operation. This allows surgeons to check the health of the kidney beforehand and to prime it with medicine to reverse any damage done to the kidney while it has been stored in ice. This gives the operation the best chance of success.

Deborah said,聽鈥淚n 2010, I was given the opportunity to receive a donated kidney, although it was damaged.聽 Professor Nicholson explained that his team had researched a new process that could make the kidney viable. I jumped at the chance as I trusted the Professor鈥檚 judgement that the time was right to try this technique out on a person. I also had nothing to lose and everything to gain.鈥�

Deborah now feels like she has her life back.

She said, 鈥淔ive years on from my operation I feel wonderful. My transplanted kidney is functioning well and I have more energy since my operation than I ever had previously. I am very positive about my future.

I feel as if I won the lottery and got the jackpot. I feel so sorry that there are so many people who haven鈥檛 had the opportunities that I have had. Research needs to go on by being funded and supported to ensure that people like me can also feel like they have won the lottery.鈥�

As the first project to be funded through the making every kidney count appeal, Professor Nicholson will go on to complete a larger project involving three major hospitals and take his revolutionary technique to the next level.

Matthew Pietrzyk is 10 years old. He loves football and is a big fan of Chelsea football club. Matthew was diagnosed with congenital nephrotic syndrome at just five weeks old. This meant that both of his kidneys didn鈥檛 work properly, causing large amounts of protein to leak into his urine. Mathew would need a kidney transplant.

Matthew鈥檚 mum Nicola describes how hard it was finding out about Mathews illness.

Nicola said, 鈥淚 thought that my child was going to have to wait for somebody to die to give him a life, and it was horrible to think that we would have to wait for someone to pass away for him to have a proper life.听聽 It's difficult to describe just how soul destroying that is, because you've brought this child in to the world and you want him to be safe and you'll do anything for him. You want to make him well and all of a sudden you're in the situation where you can't do anything.鈥�

Matthew had his first kidney removed in October 2007 when he was just two and a half. Mathew鈥檚 mum gave Mathew a kidney but it was rejected after just two days. By the time Mathew was six his second kidney had to be removed and he was left with no kidneys. Mathew was then bound to dialysis for twelve hours every day.

Nicola said, 鈥淚t was very scary because we are now relying on a machine to keep our son alive.听 I thought I'd lose him. 聽I'm actually surprised that we鈥檙e at ten. Especially because he hasn鈥檛 had a kidney and we've spent such a long time on dialysis.鈥�

Despite Matthew鈥檚 situation Nicola tries to make life as normal as possible. Mathew鈥檚 parents encourage Mathew to do all the things a normal boy his age would do. They try to make dialysis fit around family life.

Nicola said, 鈥淚 do think it dominates our lives because, we have two other children that are having to fit in with us working around what's going on with Matthew.听 We鈥檝e missed out on family holidays that we haven't been able to do.鈥�

Nicola comments on how well Matthew copes with everything he has been through.

She said, 鈥淢atthew copes so much better than I ever do. 聽I'm so proud of him, I'm so impressed with a ten year old boy having to deal with this huge disease. We don鈥檛 know when he's going to get a kidney. I鈥檓 really proud of the fact that he doesn't let that get him down.鈥�

Mathew has now been on the transplant waiting list for seven years. What Matthew really needs is a donor. His chances of finding a match are only three in 10,000.

Nicola describes how it feels to be on the transplant list,聽鈥淏eing on the waiting list is torture. You can't go anywhere, you have to be within four hours of your hospital.听 So we can't travel abroad, we can't really do relaxed holidays because you don鈥檛 feel like you ever relax.听 If the phone rings late at night you pounce on it because you think 鈥榠s it going to be a transplant call?鈥櫬� It's just horrible.听 It's a situation that we have no control over whatsoever, it's frightening and it just feels never ending. It's difficult to describe just how awful it is to be on a waiting list that actually, we don鈥檛 even know if anything鈥檚 going to come of it.

Matthew describes what he would like to do if he had the chance of a transplant,聽鈥淚f I have a transplant I'll be able to go on sleepovers and go on holiday abroad.听 But this year I'm only going to the seaside. I would like to go on holiday more than anything.听 I love football and wish I could play competitively like my brothers. I鈥檓 not allowed to in case I get the dialysis line in my tummy tugged.听 I'm not allowed to swim in shorts either because I will get my line wet or get chlorine in it. The most amazing thing I could get in the future is a kidney because I would be able to do anything I want and eat what I want.鈥�

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The first project to be funded through our making every kidney count appeal is being led by Professor Mike Nicholson, who has pioneered a revolutionary technique for kidney transplants.

Today, if your kidney fails and you need a transplant, you join a waiting list of 6,000 people. Those waiting for a kidney transplant make up 90% of the transplant waiting list. Many of these people will not get a kidney. There are just not enough viable kidneys available. Fewer than 3,000 kidney transplants are carried out each year, and every day, one person dies waiting for a kidney.

Of the people who are lucky enough to get a kidney, half experience problems with it that could affect the transplant鈥檚 long-term success. Even if the new kidney functions perfectly, it may only last around 10鈥�15 years.

Our funding allowed Professor Mike Nicholson and his team at Leicester General Hospital to develop a pioneering technique called normothermic perfusion. Now with the help of making every kidney count appeal Professor Nicholson would now like to take his revolutionary technique to the next level.

What is normothermic perfusion?

Before transplantation, the donor kidney is connected to a machine that flushes the organ with oxygenated blood. This does three things:

• It revives the kidney and repairs much of the damage caused by cold storage
• It allows anti-inflammatory agents and other drugs to be pumped through, priming the kidney for the best chance of transplant success
• It allows doctors to check the viability of the organ. At the moment, if there are any doubts about the viability of a kidney, it is discarded 鈥� this happens to as many as half of all potential donor kidneys. By allowing doctors to test kidney function before transplantation, normothermic perfusion will make many more donor kidneys available.

Professor Nicholson comments, 鈥淚n order to advance the technique we would need to apply it to many more kidneys. We鈥檝e currently transplanted about forty after normothermic preservation, and we want to do several hundred. All medical research is very expensive and requires funding. We鈥檝e already spent several hundred thousand pounds developing the technique, so what we need now is to generate more funding, more money to support developing the technique that we can introduce it into other centres around the country.鈥�

Professor Nicholson further comments on his hope for the future,聽鈥淚 hope the future will be that kidneys will be preserved using normothermic perfusion. This will increase the quality of the kidneys and hopefully give us more kidneys to transplant. The really exciting thing for the future is that we may be able to manipulate a kidney before its transplanted, dramatically reducing the chances of it being rejected. This will improve the long term survival of kidneys compared to what we currently have.鈥�

Deborah Bakewell was the first person in the world to receive a kidney transplant using normothermic perfusion.