I got my transplant months ago now. My counts climbed up and I got to be out of the hospital for a few weeks. I was having to spend most of my days at the clinic, but got to spend some time out in the world. There has been a lot of complications along the way, but everything seemed to be on track. I was looking forward to an almost normal life. I had a bout with Graft Versus Host Disease, but seemed to have come out on top. Then I got hit with CMV. CMV is a virus that lives in about 80% of people but does not really affect you until you are weak in the immune system. Since they had to purposely make my immune system weak in order to keep me from rejecting the donor cells, it allowed the CMV to attack. In order to treat the CMV, I was put on a drug called Ganciclovir. Ganciclovir fights CMV, but suppresses blood cell counts. My counts fell to the point that I am once again without sufficient cells to fight other infections, and I now have a nasty Staph infection in my shoulder providing me constant pain. A different medication is usually used for fighting the CMV, but my kidney function was too low to use it according to some of my doctors. That medication does not suppress blood counts. I am being switched to that medication today, because my kidney function has improved. The problem is that this may be too late. My doctors tell me my graft is failing. There is hope that the change in medication may save it, but it is pretty wishful thinking at this point. They may opt to do an infusion of white cells that remain from the donor to see if that boosts the graft or restarts one, but with the failure of this graft, they seem to think it is unlikely that will work. It looks like I may be headed for a second transplant, but that would be using cord blood which is less of a match than my donor cells were, and the chances of that taking are no better. I’m also not certain my body can handle the process again.
So all this seems like it isn’t going to work, but it is. I am going to recover with this graft. It is not beyond recovery because the counts actually took at first. Getting the Ganciclovir out of my system will allow my counts to recover fully. Do you know how I know this? It is because I have a great support system in all of you helping me fight this with your thoughts and prayers. I’m not giving up. That is what’s going on with me, what’s going on with you?