I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: News Articles => Topic started by: lainiepop on June 20, 2014, 05:16:43 AM
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http://www.express.co.uk/news/health/483015/Seven-year-old-girl-with-serious-illness-saved-by-kidney-transplant-from-her-GRAN
A GENEROUS grandmother gave her granddaughter the gift of life when she offered her a kidney – the oldest age gap in a donation ever seen in the UK.
Eva Dowling, seven, was diagnosed with a rare and life-threatening kidney and liver disease when she was just three months old.
Atypical haemolytic uremic syndrome – a condition which causes clots to block blood vessels leading to kidney failure – left her unable to eat any food and she had to spend three days a week in hospital for treatment.
After becoming the youngest person in the UK to undergo plasma exchange to fight the disease, Eva, from Warmley, South Gloucestershire, had to undergo frequent dialysis.
She desperately needed a donor but was unlikely to ever find one because the number of blood transfusions she had undergone made the likelihood of rejection especially high.
But luckily for Eva, her 60-year-old grandmother, Eileen Smith-Jones, was a perfect match.
Brave Ms Smith-Jones went under the knife at Bristol's Southmead Hospital in September, when her kidney was then taken by taxi to Bristol Children's Hospital, where surgeons were ready to transplant it into Eva.
The seven-year-old now has a new lease of life.
Ms Smith-Jones said: "I can survive quite nicely with one kidney and the difference in Eva is incredible.
"She never used to be able to drink, eat, and she was fed through a tube into her tummy from three-and-a-half months old, when she first became poorly.
"She had been on dialysis for two years and had to have it all through the night, and then spend three days a week in hospital.
"Now, this has changed everything. She is livelier, happier and able to do things she has never done before. We are so happy."
Eva's mum Nicola Dowling, 34, was also a match but Eva's grandmother insisted on offering her kidney.
Ms Smith-Jones said: "We know that should Eva require a second transplant, Nicola's kidney will be available.
"Unfortunately giving a kidney didn't make me any lighter - but my cravings for chocolate and red wine have gone."
Eva - who calls her new kidney 'Miss Kitty' - has ditched the milk formula she was forced to eat and now loves chocolate and porridge.
She now only has to attend hospital for one hour a fortnight so the doctors can keep a track of her progress.
Ms Dowling said that she could never repay her mother for saving Eva.
She said: "How can you ever thank someone for what she did?
"She is the sort of mum who hasn't asked for any praise or thanks, and she would say she had no choice, but she did have a choice and she made a really fantastic one.
"It has made the world of difference to Eva and the whole family.
"She can now live a normal life. I can look at her as my daughter and just my daughter, and not thinking of her in terms of her medical needs."
Eva was only able to have her transplant thanks to an extremely expensive drug - Eculizumab - which suppresses her immune system.
She will likely have to take the £12,000-a-month drug for the rest of her life, but her family fear funding could be pulled in the future.
Ms Dowling said: "It has only just begun to be funded by the NHS and it is being funded next year.
"We want to get the message out there that it is a lifesaver and without it people like Eva wouldn't be able to even have a transplant."
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Anyone ever heard of the super expensive drug they'r using? I dont know much about the cost of drugs but when they prescribed the cmv preventative meds for 3 mths after tx they said they were £3000 a month and that was considered seriously expensive! I hope they dont stop her funding after a year, there are many other things the nhs could stop first!!
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A web search shows Eculizumab is likely for the underlying disease that caused her kidney failure in the first place.
From Wikipedia:
"Eculizumab (INN and USAN; trade name Soliris) is a humanized monoclonal antibody that is a first-in-class terminal complement inhibitor and the first therapy approved for the treatment of paroxysmal nocturnal hemoglobinuria (PNH), a rare, progressive, and sometimes life-threatening disease characterized by excessive destruction of red blood cells (hemolysis) and excessive blood clotting. Eculizumab also is the first agent approved for the treatment of atypical hemolytic uremic syndrome (aHUS), an ultra-rare genetic disease that causes abnormal blood clots to form in small blood vessels throughout the body, leading to kidney failure, damage to other vital organs and premature death. It costs approximately £245,700 for ongoing treatment. The extraordinary high cost of the drug is a source of controversy."