So I went out on saturday. My friend Stephen was having a barbecue so I took the opportunity to go up and see loads of my friends, and their families, in one go. I had an absolutely fantastic time and the only pity was that my oxygen supply doesn't last as long as I'd like. Having said that though when I got home I was actually a lot more tired than I had expected to be so it was probably just long enough to be out. I know in myself that I am more subdued these days than I used to be in these sort of situations but I still enjoy myself greatly in the company of people I've known for what seems like forever.
It actually leaves me still tired the next day after I go out too but it's so very worth it. It's amazing to do something that is just a little bit normal again.
My monthly trip to the hospital was this morning and I got my infusion of immunoglobulins to bump up my immune system which went perfectly well. The consultants are all perfectly happy with everything now and seem just as keen as I am for progress on the transplant front. They've all been so visibly annoyed that this has happened to a patient that did everything according to their protocols. It just goes to show how little they can predict about any patients long term prognosis.
Slight addendum to this is that my docs called me when my blood results came in and it seems long term use of toxic drugs has had an effect on my kidneys so I have to miss a few days worth of the immunosuppressant I take and then reduce the normal dose thereafter. It only surprises me that it's taken ten years for that to happen as my body has had a lot thrown at it medicine wise over that period. As soon as the doctor told me it made sense as I've been peeing much more regularly than normal over the last week and thought it was a bit weird.
The other thing that came to light today is that the nurses at the day unit gauge my health superficially by how often and how loudly I sing when I'm there. When I'm feeling good I apparently chant away to my hearts content. I've noticed this myself actually but the issue with it just now is that while I may well be singing it's not my normal singing voice. I don't have the breath to go for it the way I normally would so it's a much more reserved performance. One of the first things I'll do with a new set of breathing gear is to really let go with a song.
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