I was a 9 month old baby when my kidney operations and treatment started. As I got older, the regular visits would see me hooked up to drips, tubes and machines that made funny noises. I knew that they were helping me to get better, but it was lonely. To take my mind off it, I would pass the time doodling, writing down my thoughts and collecting stories and photographs - ultimately it led to my career as a Creative Director. My own experience as a kidney patient, alongside the amazing work that Kidney Research UK are doing has inspired me to craft this booklet for you in the same way I would have done in the hospital, all those years ago. I hope that with your support, together we can make every kidney count.
Ian MacArthur
Making every kidney count Thank you for taking the time to read about this Appeal and the life-changing work it will make possible. Kidney Research UK have committed themselves to raising £3million to accelerate groundbreaking research into improving transplantation. It’ s simple, Kidney disease kills... but hopefully the stories in this book will inspire you to help us save more lives.
Our Joshua Joshua was born a big, healthy, baby. But after a few weeks he began to lose lots of weight and became seriously unwell. After some tests we were told that his kidneys were failing. It hit us like a truck. One kidney couldn’ t be saved. The remaining one is functioning at 18% and although medication is slowing down the deterioration of his surviving kidney, it’ s simply a matter of time before he needs a transplant. Both myself and my husband Ivor have been tested and thankfully could be good matches. If Joshua declines further then we will begin the transplant process. A new kidney should last most of his school life, then he is likely to need another. The work that Kidney Research UK does gives us the hope that Joshua will grow up and lead a good life. We truly believe this Appeal will transform the lives of people less fortunate than us.
xxx Joshua’ s Mum & Dad
Why are our kidneys so important? Super filters that clean your blood
Dirty blood Clean in blood out
They also regulate your blood pressure
They keep the whole body healthy and working... from the heart and skin to the bones and digestive system They clean all your blood 40 times per day
Waste leaves the body
It’s the most amazing organ in the human body!
What happens when they stop working? Chaos. Every cell in the body relies on your kidneys. A direct link with the heart means a high risk of cardiac failure. You become critically ill.
Can’t you go on Dialysis? Dialysis is often described as “life support with no life”. Every time you dialyse it places additional strain on the heart. Dialysis is not a cure.
Can’t you have a transplant? More than 6,000 people are on the list waiting for a kidney. Transplants currently last for an average of 10 to 15 years. A cocktail of drugs is needed to stop rejection.
How do we start
? What with? - We want to raise ÂŁ3 million. Why? - No-one else in the UK is focused on tackling this vital issue. How? - Our expertise means we can select the best research team in the UK to accelerate the pace of innovation.
Greater viability = increasing the opportunities for kidney transplantation.
Less rejection = being able to accept and keep the donated kidney functioning.
More kidneys
= new techniques mean more kidneys available.
One person dies every day in the UK waiting for a kidney.
Lydia (aged 21) At the age of 18 my hair started falling out and I always felt tired and thirsty. I went to the doctor and initially they thought I was anaemic but Later that day they phoned me back urgently and told me to find my way to a hospital immediately. That day my life changed forever. I only had one functioning kidney and it was failing. I’ve been waiting for a kidney transplant for three years now. I can no longer breathe well enough to go for walks or dance with my friends. Each night I spend seven hours on a dialysis machine but it’s slowly taking its toll. Some days I wake up feeling so sick, I know this can’t carry on much longer. h their life ahead “For young patients on dialysis, wit is like putting life on of them, waiting for a transplant things they want to hold. Having the energy to do the top of their do, that their peers are doing, on Also every year on treatment schedule is exhausting. nity.” dialysis is a lost survival opportu Professor Simon Davies
Medicine, Professor of Nephrology and Dialysis ology in Medicine, at the Institute for Science and Techn Director Health Service Research Unit e. University Hospital of North Staffordshir ist, rolog Neph ltant Consu rsity. Keele Unive
“Organs are just not meant to be removed from their blood supply. But that is just what has to happen when you move an organ from one person to another. And this can cause great, sometimes irreversib le damage to the organ. The challenge is to find ways to min imise that damage and thus prolong the life of this precio us resource." Professor Anthony N Warrens DM PhD FRCP
FRCPa
th FEBS FHEA President, British Transplantation Socie ty, Dean for Education, Barts and The London School of Medicine and Dentistry, Professor of Renal and Trans plantation Medicine and Honorary Consu ltant Physician.
Christy (aged 28) In 2006 my appendix ruptured and caused severe blood poisoning. After numerous operations and a long period in intensive care, it became obvious that I would need a kidney transplant. Luckily my fiance, Steve, was a match and in 2009 donated one of his kidneys to me. Unfortunately during the operation something went badly wrong and the kidney couldn’t be kept viable. I will always be grateful for the chance Steve gave me, but unless more is done to keep kidneys healthy during the procedure, then more lives could be lost. Every day I hope for another chance.
Alex (aged 11) My symptoms first started when I was four years old. I’ve got this condition where my body attacks my own kidneys. I started off taking ten different types of medicine, three times a day, to stop me getting worse. But it didn’t work. I ended up on a dialysis machine for 10 hours each night and my hospital treatment meant I could only go to school two days each week. I wouldn’t normally be able to have a transplant, because my body will attack the new kidney, but the doctors decided I must have a break from dialysis so I can recover and grow a bit. In January I had a transplant which will hopefully last for a couple of years so I can play and eat like my friends. This Appeal could help doctors make my new kidney last longer. t majority of “Patients walk a tightrope... the vas ction and our transplanted kidneys are lost to reje ain highly inadequate. current treatments for these rem adequately control For many patients we still cannot ir kidney transplant, the immune systems attack on the of the new organ.” which ultimately leads to the loss Dr Alan Salama
e London.
ltant Nephrologist at University Colleg
MBBS PhD Reader and Honorary Consu
Kidney Research UK’s proven governance approach ensures that projects are led by the UK’s leading kidney research specialists working in the top institutes and with the support of committed research teams.
we want the best!
THE
We ask all the doctors, scientists and researchers in the UK to tell us what groundbreaking work they are doing.
Like a kidney, we filter out the best of the best. . .
The Heroes Your support Our peer review process helps us select the best research teams and projects.
scientists professors researchers
TEAM
doctors consultants surgeons
helping transform lives
helping transform lives
When I first saw the Kidney Research UK scientists making a kidney work outside the body it was a real WOW moment!
Genetics
The UK has a wealth of scientific expertise in so many different areas of research, but making real breakthroughs is a team effort. To capitalise on related expertise and use novel approaches, researchers learn from each other as well as from their experiments! The results of this appeal will allow the “ Making important scie development and ntific discoveries that can ch funding of strong ange the lives teams working on of patients means 'thin king outside projects at a scale the box' and building co that we have llaborations with other scientists.� previously only dreamed of. Fiona Karet Professor of Nephrology & Honorary Consultant in It WILL make a Renal Medicine; Cambrid ge Institute for Medical Rese arch difference.
“The voice said ‘can you please make your way to the hospital, we have a kidney for you’. I have got my life back, a normal life like everyone else.”
Jelina Berlow-Rahman
Miss Lorna Marson
More Kidneys
As a surgeon, one of my proudest moments was completing the Glasgow 10K race with Ronnie McIntosh, a gentleman I performed a transplant for 3 years previously. Ronnie lost both his legs during a long illness on dialysis and he overcame tremendous pain to complete the race. ‘Every step I take, I take for my donor family’ was his mantra. The gratitude felt by patients such as Ronnie for the amazing gift of organ donation is humbling. The UK transplant community is a relatively small one, with enormous commitment from clinicians and scientist to work tirelessly to expand the pool of organ donors, to optimise each and every kidney that is transplanted, and thus to improve long term outcome. We have made tremendous strides, over the last 10 years but we still have a long way to go.
Professor Mike Nicholson It never gets any easier explaining to patients and their loved ones that we can’t proceed with their transplant, as we didn’t think the donated kidney was viable. Our new technique has the potential to reduce the transplant waiting list by allowing us to safely test and then use kidneys which we might previously have discarded.
Greatery Viabilit
“I was given the opportunity to receive a donated kidney that was damaged. The doctor explained that his team had discovered a new process to make the kidney viable. d I trusted his judgement and I ha nothing to lose and everything tove gain. Now I feel wonderful. I hars.” more energy than I’ve had in yea Deborah Bakewell
“I felt better immediately after waking up from the surgery. It was like my personality and mind was waking up from a long hibernation. After 6 months I felt almost fully healed. I have my life back.” Steve Fry
Professor Giovanna Lombardi It’s a vicious circle - we have to suppress the body’s immune system to try and prevent the donated kidney being rejected, but this leaves the patient vulnerable to serious infection. Our pioneering cell-based techniques offer a potential alternative to suppressing the body’s immune system, which will lead to a reduction in further complications – making every kidney count.
Less Rejectio n
Laurence
(Appeal Ambassador)
“Everything seemed ok until I heard the words ‘pack your bags for hospital, you’re going into acute renal failure.’ My life was saved by my very good friend Andrew who was willing to take time out of university to donate his kidney. We must do whatever it takes to make EVERY kidney count.”
Sandra (CEO) Since I became Chief Executive of Kidney Research UK, I have met many people with heart-wrenching stories. People that often face enormous daily struggles because of their kidney disease . I have also seen first hand the challenges that are faced in the area of transplantation and I believe that the time is now right for us to accelerate the pace of innovation. This appeal offers us a real opportunity to transform lives. It has generated an exceptional response from the UK’s leading scientists and kidney doctors. I hope that we can count you in.
Thank you for
www.kidneyresearchuk.org Kidney Research UK, Nene Hall, Lynch Wood Park, Peterborough, PE2 6FZ Registered Charity No. 252892 Registered Scottish Charity No. SC039245