How can you tell a virus from a bacterial infection from rejection? Good question and it seems neither me or my doctor can work it out. It is more and more apparent to me as I go down the post-transplant time line that this whole thing is basically educated guesswork, and the doctors seem to agree and say as much.
I went to clinic last Tuesday, just over a week ago, and was given Jas' post-1 yr anniversary blessings, had a positive chat, and he said he didn't need to see me until January. My blows were a bit down, but hey, it's probably a little virus and nothing to worry about. 'Ring us if they continue to drop'.
So I rang on Friday when things, instead of being about 5% under my best dropped to 10% under my best. I was told to wait and monitor over the weekend and see how it goes. So I did. And it was up and down a bit but on Monday was still bad, and I was complaining of chest aching and tenderness, especially on my right side, preventing me sleeping on that side.
So today I went back to clinic and my blows were marginally lower than a week previously, but not a massive drop. I talked to the doc at length and he eventually decided to FOB me this afternoon, just to check for rejection. But then they said they'd have to cancel my bronch as there wasn't room (which I took as code for a bit of triage going on and me being a borderline case and dropping off the bottom of the list...)
So here I am writing this instead of having bits chopped out of my lungs. They offered me Friday am as an alternative but that would totally ruin fireworks night and the weekend, so I've gone for next Tuesday - clinic again and then, if required, a FOB. Doc seemed happy with that approach.
With a bit of luck it'll sort itself out over the weekend. Here's hoping.
Problem is that a normal person, if they get a respiratory virus, might feel a bit tight in the chest or have a bit of a cough, but wouldn't know if their lung function was affected. If you are a post-tx person then you are measuring those blows every day and so see every little variation and who's to say that a normal person wouldn't also see a 10% drop if they had a cold?
Just need to try harder to avoid getting the viruses in the first place...if it is a virus and not rejection...and won't know that till next Tues...
Still alive and kicking
5 years ago
Sometimes I think the blows results are like stepping on a scale everyday: some days I randomly gain 5 pounds, some days I randomly loose 3. (Note, though, that the net gain is still 2. Grr...) Anyway, you're right. If you're watching your blows all the time, fluctuations will flip you out. And the doctors. Who, yes, are basically just guessing, albeit it's informed guessing.
ReplyDeleteIt seems that this is just the universal fun of being post-transplant. But I hope you FEEL okay.
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