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.
5 weeks ago