January 29: Well I'm in clinic today for a couple of infusions, IVIG to help boost my immune system and Cidofovir to fight the BK virus in my blood. I should say that since my last blog update the headache has gone and most of the nausea as well. The last count on the BK virus in my blood had come down from 250k to 54k and seems to have been the difference between feeling rough and feeling human. My appetite has returned and I seem to be eating constantly. So today they will check the BK level again and hopefully it is headed to zero, but I feel good so hopefully that's a good indicator.
I have been meaning to update my blog for a while but really didn't look forward to doing it. The reason is because I seemed to be treading water for a while and nothing was getting very much better - not a good excuse for not writing but it is the reason.
January 30: So here we are then... and I am feeling a bit better. I got some more Cidofovir yesterday as well as some IVIG, so the double whammy seems to have made a difference. Today I had my first coffee in quite a while, some marmite and also cleared a space in my basement and put my bike on its trainer. Three of my favourite things that I have not done in 6 months (I have tried coffee a few times but only today it tasted like coffee). Also, I had a Guinness the other night for the first time and really enjoyed it!
So hopefully this trend continues, I need to actually get on the bike of course and see if my sorry excuses for limbs can propel me forward (I have had a fair amount of muscle loss). I have also found the more active I am the more I realize the neuropathy in my feet is worse than I thought. I hope this doesn't become too big a problem.
One of the reasons I was having so much nausea is because I have developed some GVHD which happens in only about 10% of T-Cell depleted stem cell transplants. It is good and bad I guess. The good part is that it means my body is growing T cells from the stem cells that were transplanted into me and therefore my immune system will start functioning better and better, and start being able to fight off viruses and bacteria on my own. Also, it probably means that I won't need my first T cell infusion (but I still have to go to NYC for my 6 month checkup). The bad news is that acute GVHD can lead to chronic GVHD and therefore I could potentially be battling nausea (among other things) forever. But there are also cases where acute GVHD resolves with medication management and never shows up again. Only time will tell how things will go for me, but for now the pill I'm on has completely relieved all of my symptoms and I feel great.
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