2 steps forward, 1 step back

Phil is coming up to 10 weeks post-transplant, and by and large things are going well. However his creatinine levels on Thursday had shot up almost 50percent and he seems to constantly have an infection. The immunosuppressants are causing some painful ulcers, and the steroids are provoking mood swings – although thankfully not as marked as those see in other kids whose parents we are in touch with.

Nevertheless Phil is otherwise well in himself and is certainly pretty contented with life at present. It is all a far cry from when he was on dialysis, when he had the catheters sticking out of his chest, was having to spend half the week connected to the machine, and was constantly being wheeled into theatre because of repeated complications.

Yesterday the 4 of us went on a cycle ride by the beach – the first time we have done that in a long while, if ever. “This is what I’ve always dreamed of doing”, he said afterwards, his face beaming.

His new campaign to promote organ donor registration by contacting British Members of Parliament is growing too, with more and more signing up each week. We’ll be posting an update later today, so check in at http://www.luislist.co.uk to find out the latest developments.

There will also be a link on the site to a recent newspaper editorial that said Phil was “nothing if not determined” and called him an inspiration. I’ll drink to that 🙂

In today’s news

There was a supporting editorial which said Phil was “nothing if not determined” and “a real inspiration”.

I can’t argue with either of those…!

Phil’s campaign promoting organ donor registration in The News

Phil’s campaign to increase the number of registered organ donors by appealing to MPs to publicly support the drive received a boost with today’s article in the press: 

http://www.portsmouth.co.uk/news/health/local-health/luis-campaign-asks-mps-to-sign-up-as-organ-donors-1-5114092

He has had some very supportive responses from a number of MPs, including one who said she had been a donor card carrier but had now registered online at organdonation.nhs.uk. As many people don’t know, carrying a donor card isn’t actually the same as being on the donor register (I didn’t know this until a few months ago).

Other MPs have signed up for the first time, whilst another – who is backing Phil’s campaign – is now campaigning for high street pharmacies to promote donor registration. The reporter who wrote this story also assured me he had made sure he was now properly signed up thanks to Phil!

Phil has also had some kind offers of support, including from a group of marketing students who want to help promote the campaign. He has been invited to the House of Commons, and we have been invited to speak to a group of MPs in July.

Clearly this campaign is going somewhere. Let’s hope it helps achieve Phil’s stated goal, namely making more donor organs available so that children without a compatible relative don’t have to wait so long for a transplant…

To see Phil’s campaign website, visit http://www.luislist.co.uk

Court ruling

The Court ruled 100pc in our favour this morning – possession within 14 days, arrears (sizeable 4-figure sum) to be repaid in full, plus costs etc.

So they’ve got until June 4 to get the hell out so we can finally go home. Hope they don’t ignore this one (they didn’t bother attending court) otherwise the court will send in bailiffs. Hope doesn’t come to that, but…

PS It’s 9 weeks since the transplant today. So far so good… 🙂

Launch of Luis’ List

Here’s the first pic of Phil since last weekend’s discharge. As you can see, he is promoting organ donor registration. You can see his new campaign website at http://www.luislist.co.uk (see next post for more details)

2 months anniversary – and the launch of a new campaign

It’s exactly 2 months today since Phil’s transplant, and so far it’s very much a case of so far so good. He’s got a couple of niggling infections, and we had a minor scare last week when his creatinine levels started inching up, but everything is looking pretty much under control right now. The whole family went to the beach yesterday and had a kickabout in the park. It was a bit painful for me, but for Phil it was – literally – all just a walk in the park. He enjoyed it so much he was demanding to go back today!

Being Phil, of course, he is already looking ahead to bigger things… He has now started writing to British Members of Parliament as part of his new campaign (officially ‘launched’ tomorrow) to promote organ donor registration. Phil is launching his online campaign because of the long waits for transplants faced by some children who don’t have compatible relatives.

Last week he emailed all 17 MPs in Hampshire, as well as the leaders of the 3 main political parties. In his letter, he said the reason he had launched the appeal was because “1 year on dialysis is not fun. 5 years must be horrible.” He added: “Being a donor is just like recycling!”

The very first reply he received also elicited his very first new donor! Caroline Nokes (C, Romsey & Southampton North) wrote back within minutes saying: “I have registered online just this minute”! A number of other MPs got back quickly saying they were already registered donors. They include Steve Brine, MP for Winchester, who is not only supporting Phil’s campaign but is asking the government to promote organ donation through high-street pharmacies.

The “Luis’ List” campaign website is now live at http://www.luislist.co.uk. It publicises the fact that there are 10,000 people in Britain waiting for organ transplants. It will be updated weekly as new endorsements are received.

The new Eastleigh Lib Dem MP Mike Thornton is among other politicians who have confirmed to Phil that he is a registered donor, as is George Hollingbery (C, Meon Valley) and Phil’s own MP, Caroline Dinenage (C, Gosport). Dinenage also invited Phil to the Houses of Parliament. The office of David Willetts (C, Havant) wrote back saying “we are sure that if David is not already he will want to consider doing so”.

Prime Minister David Cameron and Deputy PM Nick Clegg (the latter via an automated reply) have both acknowledged Phil’s letter, although haven’t yet said whether or not they are donors. Unfortunately there hasn’t yet been a reply from Labour leader David Miliband.

Others to have acknowledged Phil’s letter but not yet respond are James Arbuthnot (C, NE Hampshire) and Mark Hoban (C, Fareham).

A number of MPs haven’t yet replied. They include Gerald Howarth, Maria Miller, Desmond Swayne, Sir George Young , Penny Mordaunt, Mike Hancock, John Denham and Alan Whitehead. An automated acknowledgement was received from Damian Hinds.

Phil is now going to be writing to politicians from all over Britain. He is contacting them alphabetically, starting this week with those whose surnames end in the letters A and B. Once he has finished writing to every MP he will then start targeting celebrities and sports stars.

If you would like to follow up with those MPs who have yet to give their answer and ask them if they would like to join “Luis’ List”, you can find their contact details at http://www.parliament.uk

Court hearing – update

Some good news on our efforts to evict the rent-dodging squatters from our home. In view of Phil’s condition, the court has today brought forward the hearing date from June 6 to May 21 – which is next Tuesday. Let’s hope all goes well and that Phil and the rest of us can pack up the tent and go home asap!

Why There’s A Need for Registered Donors

Phil persuaded a British Member of Parliament to become a registered organ donor today. Just like that.

He wrote to her saying that he felt lucky he had waited ‘only’ a year for a transplant because he had a compatible relative. There are children who aren’t so lucky, he said, with some having to wait 5 years for a deceased donor organ. Their wait was due to a shortage of organs, and it could be reduced if only more people registered to donate their organs.

In the UK, there are currently 10,000 people waiting for a transplant of different organs. Because of a shortage of donors, 3 people die every DAY because the organ they desperately need doesn’t become available in time.

Today marks exactly 8 weeks since Phil’s transplant. It also marks the start of a new campaign to help bring accelerated relief to children and others in need of a transplant.

Watch this space for details…

Discharged

We move out of Great Ormond St Hospital’s patient and family accommodation today. It’s a big step, and in other circumstances we would be feeling euphoric.

Unfortunately our rent-dodging tenants have simply ignored the eviction notice served on them for massive rent arrears, so as of today we are officially homeless until the court bailiffs forcibly evict them.

Fortunately different friends have kindly come to our aid and are putting us up for a few weeks here and there until this is hopefully sorted out and Phil and the rest of us can finally go home.

So we’ve got essential stuff (including Phil’s pile of medications) with us, and the rest of our things are in storage. Phil is still fighting norovirus, which doesn’t make things easy.

He has 2 sets of hospital tests booked in next week. His Tac levels are high right now. We’re hoping they don’t plan to admit him on Monday and send him into theatre for a biopsy.

Another Milestone!

Phil did something yesterday that he hasn’t been able to do in a year – and boy did he enjoy it.

Yes, he went swimming! He spent so long in the pool he came out all wrinkly. And then went back for a second go, this time with some aqua-jets they had at the centre – very James Bond!

He slept in until 11am this morning. He was clearly exhausted by the exertions. But wow did he have a good time 🙂