100 days since the last dialysis, 150 ‘Likes’ for http://www.facebook.com/luislistcampaign, and over a dozen more MPs joined the campaign this week! (Oh, and the number of visits to this blog is approaching 10,000.)
Have a good weekend 🙂
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:Â “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.
Our current situation is covered in today’s Daily Mail (see link below). Tomorrow though I’ve got some exciting (and much more positive!!) news of a different sort about the Luis’ List campaign and David Cameron.. Stay tuned!
http://www.dailymail.co.uk/news/article-2342592/Family-forced-let-house-son-9-underwent-kidney-transplant-stuck-caravan-tenant-refuses-leave.html
You’re probably bored of it by now – I know I am – but the “squatters saga” continues, as demonstrated by this latest story in the local press (see link below). Clearly this issue has provoked a lot of strong feeling locally, and I am grateful for the direct messages of support sent to me here and elsewhere.
I have not joined in with the (often heated!) online discussion, although I was surprised at one of the comments made by one of the tenants (who had refused to speak to the journalist), namely that she was essentially being advised by the local council to ignore everything until the actual bailiff order arrived. If true – and the lettings agency had previously advised me that this was probably the case – then it shows shocking complicity on the part of the council, as well as a blatant disregard/manipulation of housing law which has only served to make matters worse for us all.
I won’t comment on what the tenants have to say other than to remark that it seems that they and their relatives appear to be spending a lot of energy trying to defend their actions yet relatively little in packing their bags!
As for the bailiffs themselves, they have told the solicitor that they will get back imminently to advise us of the date. So the wait continues…
There were a number of new messages of support from politicians today, including from Tom Brake MP, Nigel Evans MP and Philip Davies MP. The latter remarked: “You are clearly a very brave boy – I am sure your Mum and Dad are very very proud of you”. Right on both counts!!
See http://www.facebook.com/luislistcampaign for the latest news and views.
It was my turn for a check-up today. The boys weren’t happy about me going off to London on my own! However I managed to get to Guy’s Hospital without any problems, and even managed to sneak in a quick work meeting en route.
The consultant said my creatinine levels 6 weeks ago were a bit higher than they would have wanted, so let’s see what today’s results say.
I was a bit sore by the end of today just from having worn a ‘normal’ pair of trousers and belt (I’ve been happily wearing baggy jogging pants almost constantly since the op. The position of the incision is a bit too close to the belt line for comfort..)
The consultant was generally pleased with my progress, not least with the fact that Phil is continually dragging me out with him for swims, cycle rides, football games etc! Its true that the twinges are no longer as sharp, however Saturday’s full-on activities left me exhausted and spending most of Sunday in bed! The pain from pollen-induced sneezing is easing, and the testicular drainage issue has cleared up. My blood pressure has surprisingly jumped a little – although maybe it’s not so surprising when one takes our current tenant issues into account..!
Provided the creatinine results are ok, my next appointment will be in March 2014! (I even have a date for it!!) Fingers crossed.
Clinic day at Great Ormond Street Hospital today, which means blood tests, examinations, review with the consultants..and then waiting several hours with baited breath for the labs to report back.
Well I’ve just spoken with the ward, and Phil’s results are back – creatinine 57, Tac 5.9. The latter is a little on the low side, but the creatinine is continuing to head in the right direction. Phil’s antibodies are yoyoing up and down, and there’s a definite reaction/attempted rejection by Phil’s immune system against one of my gene markers. However the high MMF doses are just about keeping on top of it (albeit with some occasionally unpleasant side effects in Phil).
The overall conclusion is that everything is still right on track, and – most importantly as far as Phil is concerned – we can now move to fortnightly tests! This is a big milestone, and Phil was naturally over the moon when I told him. It means that, provided he shows no signs of being unwell, he won’t have to go into a hospital or have needles stuck into him for a whole fortnight 🙂
And as far as the ‘other issue’ goes – well, we’ve now settled into our caravan and had word from the court this morning that, in view of Phil’s condition, they are going to do everything possible to fast-track the bailiffs. We may get an eviction date tomorrow, so stay tuned!
Do you like Luis’ List? Specifically have you ‘Liked’ the Luis’ List Facebook campaign page yet? It’s already got 98 ‘Likes’. Help it reach its first milestone of 100 ‘Likes’ today! Click on the link above. Thank you
PS Don’t forget to visit the Luis’ List website too to find out the latest progress with the campaign: http://www.luislist.co.uk
our kid needs a kidney 