The Kidney Kids Forum is now up and running on Facebook. If you have children with kidney disease please join this group to discuss, share and support other families. It’s a closed group so only other members can see your posts. Search for ‘Kidney Kids Forum’ on Facebook to find us. Look forward to meeting you over there!
Launch of Kidney Kids charity
To mark World Kidney Day 2014 – as well as Luis’ 1-year ‘Transplantiversary’ – we are launching a new charity.
Kidney Kids is the UK’s first charity for children affected by kidney disease and their families. We will work to promote greater awareness about the impacts of the disease and the needs of sufferers and their families. We will raise funds for medical research which experts believe could hold the key to major improvements in outcomes and potentially point the way towards a cure. We will also campaign to reduce transplant waiting times for children by encouraging donor registration and by calling for the introduction of an ‘opt out’ law.
I very much hope you will feel able to support Kidney Kids. You can find our Facebook page at http://www.facebook.com/kidneykidsuk . We also have a website under construction at http://www.kidneykids.co.uk . I will post details of the launch shortly.
All the best
Happy New Year! (and some news…)
Apologies for long radio silence. As some of you will know, my wife (‘Ann’) was taken seriously ill a little while ago and needed major emergency surgery. However I am pleased to say she is now on the road to recovery.
‘Phil’ (Luis) meanwhile continues to do remarkably well, although his mother’s illness was very upsetting for him and his brother. However at least we were all able to spend this Christmas together at home – unlike last year!
In the New Year, I am starting a new blog which I will tell you about shortly, and also giving details of a new charity which aims to help children with kidney disease.
For now, though, I just wanted to take the opportunity to wish you a wonderful, and healthy, 2014!
PS I have belatedly received a reply from BBC Director General Tony Hall about that disgraceful Holby City episode, which I will post separately.
Like many people, I was shocked and appalled at their recent gross misrepresentation of organ transplantation. Worse still was the news that a number of registered organ donors subsequently rang the NHS Blood & Transplant service – who maintain the donor register – asking to be removed. I received an unapologetic round-robin letter from the BBC when I contacted them about it, and then discovered that a number of transplant recipients and donors had received exactly the same (non-) response.
We agreed that we would put together a joint response, and I said I would have a go at a first draft. So here it is. Email me any comments to firstname.lastname@example.org, and also let me know which ‘category’ you fall into (eg transplant recipient, donor) and the month/year your procedure took place.
We are transplant recipients and donors. Most of us have never met. But we recently discovered that many of us had, individually, all written to the BBC about a recent episode of Holby City.
The show had carried a storyline about organ transplantation. It was so shockingly inaccurate and dramatically contrived that it has prompted people to leave the donor register.
When we contacted the BBC, we all received exactly the same wooden and woefully inadequate response. They probably thought (or hoped) that we would then go away.
We won’t, though. Because of our experiences, we’re pretty determined people – and hardly likely to be deterred by a BBC bureaucrat. The BBC may have failed to respond to the complaint lodged by the NHS Blood & Transplant service (whose consultants to the episode were roundly ignored). But it would be making a serious mistake to under-estimate people who know close-up the reality of a life-saving transplant.
Britain already faces a chronic shortage of organ donors. Every day, 3 people die because there aren’t enough of them. That is 1000 loved ones who will die needlessly this year, and whose lives could have been saved. For people to leave the donor database because of a cheap soap plot that could now literally cost lives should leave BBC Executives feeling deeply ashamed.
We are not here to complain, however. We are offering to help the BBC undo the damage.
We will work with the BBC to help it raise awareness of the dramatic need for more donors, including among its own staff. We will arrange for the BBC Director-General and senior Executives to meet with transplant recipients, including children, as well as live donors and those on the waiting list. Many of us already support the work of the NHS Blood & Transplant service to recruit more people to the register. We will happily tell our story to the BBC.
The shortage of donor organs is one of the biggest health crises in this country. We hope that our offer will help to ensure the BBC never makes such a terrible error of judgement again.
Better still: we will ensure some good comes out of this. We will help the BBC recruit more people to the donor register than have been lost because of this episode.
We do this freely and of good will. We are now just waiting for the call from the BBC Director General Tony Hall.
We know all about waiting. But until that call comes, we won’t go away.
Going home…and going global!
We’re going home this weekend – finally! The deep cleaners have finished, and Phil, Chris and Anne are busy repainting. (Perhaps not surprisingly, we’ve already started receiving visits from other people our former tenants owed money to…). The removals van is getting our stuff from storage on Saturday, and we’ve chosen new beds.
I’ve also just realised that this blog has now been going for 6 months and has been visited nearly 10,000 times!! What’s really astonishing is the fact that Phil’s story has attracted interest from people literally all over the world.
According to WordPress, readers of this blog come from: Australia, Austria, Brazil, Bulgaria, Canada, Columbia, Finland, France, Germany, Hong Kong, Ireland, India, Italy, Israel, Kuwait, Mexico, Malaysia, Moldova, New Zealand, Nigeria, Portugal, Philippines, Poland, Peru, Panama, Pakistan, Romania, Russia, Switzerland, South Africa, Spain, Singapore, South Korea, Thailand, Taiwan, the UK (including Guernsey + Jersey), the USA, United Arab Emirates, and Vietnam.
Thank you for all your support – it has meant the world to this family knowing we are not alone!
Phil, I’m pleased to say, is continuing to do really well. His clinics are now down to just 1 in every 3 weeks. He is naturally elated to be able to go home.
And his ‘Luis List’ campaign is going from strength to strength. Check out and ‘like’ his facebook page if you haven’t already: http://www.facebook.com/luislistcampaign
Editorial: Why we need a new donor organ law
“Young Luis Goncalves was anything but daunted when he wrote a speech for MPs in the House of Commons and his heartfelt words are worth repeating…” The News, July 11, 2013
(click on link to view full article)
reproduced from the iLiveiGive website, which is raising awareness of organ donation:
In May 2012, eight-year-old Luis Goncalves was admitted to hospital after being diagnosed with kidney failure. Over the next few months he underwent no fewer than 10 operations, many of them emergencies. In March 2013, he received a kidney from his dad – This is his story.
“Luis had showed none of the normal symptoms of kidney disease, such as lethargy, vomiting or lack of appetite,” says his father Ed. “On the contrary, he was a bundle of energy, was doing well in soccer club, and loved cooking.” However, when eight year old Luis suddenly started complaining of stomach pains, tests showed the urea and Creatinine levels in his blood to be almost six times normal levels – classic indicators of kidney failure. His potassium levels were so high he was at imminent risk of cardiac arrest. Ultrasounds and further tests confirmed his kidneys were shutting down.
He would need a transplant. But he would also need to start dialysis immediately. Surgeons implanted a long tube into his abdomen which would enable him to be connected to a peritoneal dialysis machine. “He had to have peritoneal dialysis six times a week for ten hours a day,” recalls Ed. “Peritoneal dialysis comes with the advantage of having the machine at home, so my wife Siobhan and I were trained how to do it.”
At the same time, Luis’ parents told doctors that Ed would go forward as his prospective kidney donor. “We were both prepared to do it,” explains Ed. “However we thought it made more sense if I took time off work to go through with it, whilst Siobhan would help Luis recover.”
A few weeks later, though, disaster struck. Luis awoke in the early hours of the morning in agony and with a raging fever. He was rushed to Great Ormond Street Hospital. He had picked up pseudomonas, a hospital bug with a high mortality rate, and had now developed peritonitis. For the next few days, Luis was connected permanently to a dialysis machine as well as an IV drip, both of which were pumping antibiotics – a last resort – into him.
Although he gradually recovered, the catheter became infected and Luis needed surgery to remove it with a ‘permacath’ tube to be inserted instead. This would be implanted into his chest and go directly into his heart, and he would now have to do hemodialysis at the hospital three days a week.
“When Luis was on hemodialysis, it was as if he was leading a twilight existence,” says Ed. “He had tubes protruding from his body and he wasn’t himself any more. He wasn’t allowed to do even the simplest things and we couldn’t stray far from the hospital. The hospital became his life, if you can call it that.”
The hemodialysis also caused serious medical complications. A number of catheters became infected, requiring several operations to remove them and to insert new ones. Luis spent most of Christmas in hospital and was even recalled to hospital on his birthday. The repeated operations caused blood clots to form on both sides of his heart. Luis has had surgery to repair the blood vessels – one now has a metal tube inserted in it – however surgeons failed to unblock the other, which means he will not be able to have hemodialysis in future.
Meanwhile, although Ed had managed to pass the exacting physical tests to ensure he had healthy kidneys and was fit for surgery, new complications were emerging with the transplant. “The doctors found that Luis was carrying unexplained antibodies in his blood. At one point, it looked very unlikely that Luis would be able to have a transplant,” says Ed. “That was a very dark period.” After consulting with specialist immunologists from King’s Hospital, Great Ormond Street’s doctors decided to go ahead but warned Luis’ parents that it was classified as a “high risk” transplant.
There was more drama to come, though. At 10.30pm the night before the transplant, the operation was suddenly called off when blood tests showed Luis had suddenly developed a potentially serious liver problem. Four weeks later, on March 19th, it finally went ahead.
“I stayed with Luis all night the night before,” remembers Ed. “We watched Scooby Doo DVDs until quite late then cuddled up together until he fell asleep. Just before 6am, Siobhan arrived. I kissed Luis goodbye, hugged Siobhan, and got into the waiting car that took me across town to Guy’s Hospital, where my kidney would be removed. I went into the operating theatre at about 8.30am.”
At around 12.30, Ed’s surgeons called their counterparts at Great Ormond Street Hospital to say that his kidney was out and would soon be ready to be transported. Luis and Siobhan then walked down together to the operating theatre, hand in hand. Siobhan read Arthur Ransome’s “Swallowdale” to Luis as they went. By 1.30pm, Luis’ operation to insert his father’s kidney was underway.
For Siobhan, a long afternoon of waiting and pacing lay ahead. Guy’s Hospital called her from the recovery room where Ed lay to say that he was OK and that everything had gone well. And then at just after 6pm, doctors called Siobhan into the recovery room. Luis was about to come out of theatre.
When he did finally emerge, his bed was surrounded by around 10 doctors and nurses, each of them tending to a different tube or monitor. There was barely space for Siobhan to reach over and give Luis an encouraging squeeze of the hand as he began to regain consciousness. Once all the lines and machines had been connected, he was taken straight up to the isolation unit.
“I was wide awake and back on the ward by the time Luis’ operation had finished, so was anxiously waiting to hear how it had gone. When I heard that he was awake and that the new kidney was working, I was just ecstatic!” says Ed.
Over the next 48 hours, Luis’ Creatinine levels tumbled – showing that the new kidney had not only taken but was working perfectly. Ed, too, was recovering well from his operation and was discharged early.
“When they said I could go and that they would take me to Great Ormond Street to see Luis, I was like an excitable puppy! All I wanted was to see my son and give him a big hug.” Siobhan met Ed at the entrance at Great Ormond Street, from where he walked to his son’s room. “It was actually quite difficult to bend over, and he was struggling to reach up too, but somehow we managed to have a cuddle. It was probably the best moment in my life,” recalls Ed.
Although it had been classified as a ‘high risk’ transplant, there have been few complications since Luis’ transplant, and life has gradually been returning to normal.
“He was at his friend’s house the other day, and they were just trampolining and laughing for hours on end. I haven’t heard him laugh like that for a long time. The biggest change in him is just how cheerful he is. He wakes up with a smile on his face, and his sense of humour has returned with a vengeance. He jokes that I can now be in two places at once! Luis and I have always been close, but this has probably brought us even closer together.”
“Obviously this isn’t the end of the story. Kidney failure is incurable. He will have to have further transplants in future. There will doubtless be complications around the corner, but right now he’s happy and full of beans. He’s constantly dragging me out to go swimming and cycling with him and to play football.
“The worst thing when you’ve got a kid who is sick is that feeling of helplessness – that you can’t do anything to make things better. I feel incredibly lucky. I was given a chance to do something. I was able to make my son better again. As a parent, you always want to do whatever you can to help your kids. Giving my son a kidney is the most important thing I’ll ever do in my life.”
Since leaving hospital, Luis and Ed have launched an appeal for more people to sign up as registered organ donors. “The fact is that there are a lot of children – and adults – who aren’t as lucky as Luis and me. We were a good match; some kids don’t have a compatible family member, or their new kidney has been rejected so they’ve had to go onto the waiting list.” Luis has been writing to MPs asking them to sign up to the NHS’ register of donors in order to set a good example to others.
“The response has been extraordinary. Luis had letters of support from the Prime Minister David Cameron, Government Ministers, the Shadow Health Secretary to name but a few!”
For more information, visit www.luislist.co.uk
Raising awareness in the House of Commons
Luis (aka ‘Phil’) with Dad, Nigel Evans MP (left) and staff from the NHS Blood & Transplant campaigns team
Today in Parliament
Here is the text of “Phil’s” speech at today’s NHS Blood & Transplant event at the House of Commons as part of their ‘Transplant Week’ campaign:
“Hello. My name is Luis. I’m 9 years old and I’d like to tell you what it is like to need a transplant.
Last year, the doctors told me my kidneys weren’t working. So I had to start doing dialysis.
Dialysis is horrible and really boring. I had to do it for nearly a year.
For the first few months I was doing it 6 days a week for 10 hours a day. Then I had problems and had to switch to doing dialysis in hospital.
I had a lot of problems with dialysis. I had to have a lot of operations, 8 operations in fact.
And I had to spend a lot of time in hospital. I had to go to hospital on my birthday. I even spent most of Christmas in hospital, although I did get a visit from the Red Arrows – which was really cool!
As you can imagine, I was pretty pleased when I had the transplant! It didn’t hurt as much as the other operations. I got a kidney from my Dad, which is really good because it means me and him will always be together!
It also means my Dad can be in 2 places at once, which is good because he’s always so busy!
I can do all the things I used to do now. I can go swimming, eat my favourite food, and play football.
I started my campaign because I felt sorry for the other kids I met in hospital. Some of them are still waiting for a transplant.
Some have already had a transplant but it didn’t work. Some don’t have a mum or Dad who can give them a kidney.
Some of these children have to wait as long as 5 years. I know what it was like to wait for a year – it was no fun at all. It must be really difficult waiting for 5 years.
I think it’s really great that you MPs have been liking my campaign! It was fun being in the newspapers and talking on the radio because more people will hear. And I hope it will make things better for children who are sick.
My Dad works on environmental things, but I reckon donating an organ is the best kind of recycling! I hope a lot more people sign up as donors.
Back in house
Just got back into our home. The tenants had done a runner before the arrival of the bailiffs. They left a few choice items behind for us eg a harpoon and a samurai sword sitting in puddle of dog wee on the downstairs floor. The inventory lady from the lettings agency has had to don surgical gloves.
The locks have now been changed and I’m waiting for deep cleaner contractors to arrive. As the garden was used as a dog toilet, its now got to be completely dug up + returfed before its safe for Phil. Most of the downstairs floor is going to have to be replaced too.
But at least we’ve got the house back, and we got a lovely warm welcome from some of our neighbours 🙂 I’m hoping to get everything done by the weekend so we can FINALLY all go home.