T + 193 Six Months On

Posted by raetsel at Friday, March 27, 2009

As you can see by the title of this post I'm one hundred and ninety-three days post transplant or a little over six months.


Overall my recovery has gone very well with only a couple of minor infections ( colds and sinuses ) and a few blood transfusions. There's just been this annoying GVHD skin rash that has delayed everything by the need to treat it with steroids.

Back at the start of my treatment the docs said it would be six to nine months before I would be able to start leading a normal life, maybe a year. Of course at the time I only heard the "six months" and up until Christmas everything was looking on track for that.

I've come a long way from how dreadful I felt when I was in hospital in September and when I was first out of hospital so I shouldn't really complain now about having to stay mostly in the flat.

I shouldn't really complain......but human nature being what it is, well this particular human's nature at least, I can't help but voice my frustration at not being able to engage in social activities and see more of my friends. 

What's worse for me now is the uncertain nature of when the GVHD will be sorted and I can start tapering off the anti-rejection drug, ciclosporin and look at getting back into a normal life, or something approaching normal at any rate. 

I've given up making plans at the moment. Gareth got us tickets to see Anthony and The Johnsons at Symphony Hall at the end of May. When he booked the tickets in February it seemed that by the end of May going out to concerts would be no problem. Now it's looking like a damn close run thing ( to apparently misquote the Duke of Wellington ) though I'm still hopeful of going. Even if that might be the "triumph of hope over experience" . 

Come the time I might see if I can get special dispensation to go off the Doc even if I am still not fully immune recovered, after all this is not the mosh pit at the Carling Academy, you get a better class of infection at Symphony Hall.

Any plans we might have had for a little trip away in the country in the Summer are just vague ideas at the moment as I don't feel able to make any sort of commitment. It's a similar situation with getting back in the office, though thanks to the wonders of modern technology I can do all my work just as easily from home.

What do the next six months have in store? Well if things go well , I will finally get this GVHD sorted and taper off the anti-rejection drugs. At around the end of those six months I'll have my vaccinations again for polio, TB, typhus etc.( plus MMR probably as they didn't have that in my day and I was quite ill as a child with measles). 

My immune system will still be considered "naive" for some time beyond that and I will be at risk of developing shingles for up to five years. ( About 30% of transplant patients who have an unrelated donor develop shingles and it can be quite serious ). 

I'll be taking penicillin as a precaution for the rest of my life, though at two tablets a day that is hardly a burden.

If the foregoing sounds overly negative it's not meant to be. I have a lot to be thankful for but for the benefit of anyone who reads this blog who is going or about to go through the same process I think it is important to be as honest as possible about it and how it affects me.



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