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

Thanks. ‘Charlie’

Luis’ story

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.

Luis' Story 02

“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.

Luis'Story 03

“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

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.

Big Week!

It was my first day back at work yesterday. Phil was quite upset to see me go, as was Chris. Everyone at work was very kind, as indeed they have been throughout, and made me feel welcome. I felt a bit sore by the end of the day after wearing ‘normal’ trousers and a belt for so long!

In a couple of hours, bailiffs will be seeking to repossess our home from the tenants who were ordered to leave by the court a month ago but failed to do so. A dog handler will be present as there is a Staffordshire Terrier at the property, and a locksmith will change the locks as soon as they are out.

There will also be a gardener there too. This is because the tenants have used the garden as a dog ‘toilet’. The mess presents an extremely hazardous infection risk to Phil because of his suppressed immune system. The garden is literally having to be completely dug up, and the house deep-cleaned from top to bottom.

Hopefully it will be safe for Phil to go home by the end of the week, and we plan to move our things back in next weekend.

So fingers crossed – this time next week we might finally be home! Then we just have the small matter of £4000 in rent arrears to get back from the tenants…Our solicitors have been in touch with them to see if it is possible to reach an out-of-court agreement, but – surprise surprise – they’ve heard nothing back whatsoever. So it looks like it’s back to court…

3 month anniversary

Its exactly 3 months since Phil had his transplant. With the exception of the pseudomonas infection (which required emergency surgery) and the semi-successful operation to unblock a blood clot near his heart, the weeks since the ‘Big One’ have been remarkably – and pleasantly! – uneventful.

There are a few things knocking about in the background though: he is EBV+, which will need to be watched very carefully as it may lead to lymphoma; his rejection antibodies are up; he’s had recurrent bouts of norovirus. However compared to the 10 months which preceded the transplant, it is no wonder Phil wakes up cheerful every day (well, almost – the only blot on the horizon is that we are still not able to go home. A visit to the tenants by the Court bailiffs is now imminent, though).

In a couple of weeks time, I return to work. My creatinine still isn’t where it should be, and I will be back at Guy’s again shortly. But it should sort itself out. Phil, meanwhile, has been invited to address a group of British Parliamentarians about his campaign to promote organ donor registration. We will be pressing the point that there is an urgent need to make it easier for organs to become available.

However we will also be calling for increased research efforts to find a cure for kidney disease. All too often, a transplant is seen as a ‘happy end’. It’s not. It’s a battle won. But the war isn’t over. Kidney disease remains an incurable disease. Children like Phil face an uncertain future.

We owe it to him – and others like him – to banish this illness to a chapter in history books.


David Cameron’s letter to my son

Britain’s Prime Minister David Cameron has written to Luis (‘Phil’) in support of his campaign to promote organ donor registration. He is the latest leading politician to back the campaign, following David Blunkett, Hillary Benn, Andy Burnham, Sir Peter Bottomley, Alistair Burt, and others.

In his letter, he writes: “Dear Luis – Let me say how pleased I am to read of your successful kidney transplant and that with the help of your dad donating a kidney to you, you were able to come off dialysis. I want as many people as possible who need organ transplants to get them. There are lots of opportunities that can be used to encourage people to think about organ donation, such as renewing a driving licence or passport, or registering with a new doctor. We are working hard to raise awareness of organ donation MPs.”

Click on the link below the headline to see the original letter in full. And if you haven’t already, please ‘Like’ and share the Luis’ List campaign Facebook page. Thank you.