No news

Talking of no news reminded me of this by Adam Buxton: No News

If you haven't seen his stuff, he's off the legendary Adam and Joe show and I think my favorite is Songs of Praise.

No news to speak of at all

Well, it's been a while since we last posted, so here's a quick update to confirm that nothing exciting has been happening to us. In case you've been on tenterhooks, Will's sleep study was borderline, so they are going to see him again in six weeks. We had a pleasant trip up to Will's mum's last weekend and squeezed in an ice cream on the pier in Cromer. We've each managed to catch up with some friends. I cut back the wisteria today. Will made an Economical Cut and Come Again cake then threw it across the kitchen while removing it from the tin. So August is a slow news month on willslungs too...

Great non-transplant-related news

While poor Will was hanging around in Papworth sleep-study-hell this morning, I got some brilliant news. A while ago my youngest sister Maddy, who has Down's Syndrome, was offered a place at Foxes Academy, "a training hotel and catering college for young people with mild learning disabilities". This morning we got confirmation that the local authority has agreed to fund her to go. This means Maddy will get to have a three-year, away from home educational experience, like most of us did when we went to university. The aim is to equip her with skills to maximise her independence and employability. But it also means she'll get to make more friends and do a lot of the 'hanging-around' type social stuff that we all enjoyed at uni. Anyway, Foxes seems to be a fantastic place and it's a great opportunity for Maddy. So it's not just hurrah for the NHS, but hurrah for Oxfordshire County Council and Connexions too (and it's probably not too often you hear people say that!).

Officially on the list!

Just rang the transplant team and they apologised for not giving me a call at the end of last week - "it was bedlam here" - more euphamisms for transplants going on I guess...

Anyway, the bloods came back "fine and dandy" with nothing to worry about, so I guess that means still no antibodies. I was apparently listed on Friday afternoon. It's nice to have the uncertainty removed and is a weight off my mind. Now Vicky and I can try to just get on with stuff and forget about it all until the call comes.

...but I do have to go to Papworth again today. Somehow appointments get spaced just close enough to each other so that you never feel like you really escape the place - there are always at least two appointment letters on the table at home. Today and tonight I have to do the most unpleasant of appointments, a sleep study. This is done to check your blood gases overnight, which tends to be when people breathe more shallowly. Shallow breathing + CF can lead to increased CO2 in the blood, which makes you wake up with awful headaches and can have serious detrimental effects over a long period. Because of this, and as a result of previous studies, I've been using a ventilator overnight for a few years now, which means wearing a mask over my nose and being attached by a hose to a machine that blows air, triggered by my breathing, to help fill my lungs better. This has worked well and made my CO2 levels normal. The possible problem now is that my rest Oxygen levels are getting quite low, so they may need to add Oxygen into the mask overnight as well. Doing that would mean installing an Oxygen concentrator the size of a fridge into our house and running a tube from it to me at night. This would also make travel and nights away more difficult, although I'd probably be able to manage without it for a few nights as it won't be transportable. I hope so anyway...

So we'll see - I might be ok and won't need it. The sleep study is horrible because you are in a large ward with lots of old men with emphysema, generally overweight, ill, dying people. It's a horrible atmosphere, the nurses aren't nearly as nice as in the CF ward and there is a lot of waiting around for anything to happen. All that combined with the fact that they give you an arterial blood gases test, which involves sticking a needle vertically into your wrist, directly into the artery, and can be one of the most painful things ever as there is a nerve very near the artery that they sometimes hit. Ouch!

You may find it difficult to understand how the prospect of something like a lung transplant could give me joy, but it really does. Without that light at the end of my (and, of course, Vicky's) tunnel I really don't know how I'd manage with the gradual decline in health, increase in equipment and decrease of freedom. From time to time I have dark thoughts about how I would be coping if I hadn't met Vicky and was trying to cope on my own. It is truly scary and I give thanks to the fates every day for bringing us together. Together we are incredibly strong and my love for Vicky knows no bounds.

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Crossings

Brilliant image from my Jane and Scott, my aunt and uncle. Friends, Jane's piano pupils and their parents took part. Really made my day getting a card with this on it. Thanks!

Ok, well not quite

Had a call today from one of the transplant coordinators. I'd rung them on the 3rd, as I was told to, to confirm I was on the list. No-one was available and no-one rang me back, so I called again yesterday and the secretary explained they'd been very busy ("unfortunately...or, well, fortunately") - which I took to mean they'd had a transplant. As a side note there was a dreadful assualt on Monday night in Cambridge on a young man, who'd ended up dying of head injuries and it just makes me think that maybe it was that guy who ended up being a donor. 21 years old, rugby player...

So, anyway, they rang back today and said they needed a blood test from me to confirm tissue typing. The blood they took during assessment had come back clear of any antibodies, which is a good thing as it means I am less likely to reject a wider selection of organs - more might be suitable - but when they have a clear result they do the test again just to make very sure. It's funny the way the transplant team seem to work - it is either nothing or everything very fast. I wonder if the fact they do the transplants in this way - no donors, no donors, argh! a donor - everyone get going - rubs off on their other more routine stuff. They said to me today that for them to get the bloods analysed this week they had to get them in a taxi to Addenbrookes at 3:30pm. The call to me was at 12:50. Luckily, I take Wednesdays off work for a bit of a rest in the middle of the week and so I could get in the car and get it done.

It turns out, then, that I'm not actually on the list yet, but should be by Friday, or Monday at the latest. They will give me a call.

On another note, in my last post I said I was feeling pretty grim. Well, it seems to have sorted itself out and I'm back to what I'd call normal - seems it was some sort of virus as others of my family have had similar symptoms after the Suffolk jaunt.

Today's the day

Well, they haven't called me so far. But I am officially on the list as of today, so in theory I could get the call at any time, from 1 day to 1 year or more. I've just got through a pretty rough old week and have an increased reliance on Oxygen suddenly - I really should be on it all the time, but it is such a pain in the arse that I don't. Having just gone to get a sandwich from the van at work and then walked back and climbed the stairs, even with Oxygen, I feel light headed with slightly blurry vision and an incipient headache. Of course, this could also be due to the fact I'm starving so I should eat the sarnie rather than carry on typing.

Anyway, bring it on. Sooner rather than later please!