Update

I have been meaning to post an entry, but my time has been very limited recently. I still have two or three appointments per day and each appointment is a hurry up and wait game.

Anyhow, the good news is that my GVHD is now under control and the doctors will again begin the process of tapering me off the immunosuppressants. The bad news is that even if things go well, it will take until mid-September before I am off just one third of the dose of my steroids. Again, these steroids are very harmful and they cause severe muscle loss (I can't even do a pushup or walk a flight of stairs right now), weight retention (my face and belly are bloated despite losing nearly 40 pounds), vascular necrosis, joint pain, and a host of other issues. I will continue to be disabled for quite some time, and I will continue to have multiple appointments per day until sometime around October--and this assumes everything goes well.

I am trying not to be depressed about this news, but it is difficult. On the one hand, I just want to get up and run away from this place. I am tired of constantly being surrounded by someone who is busy reading my computer screen or waking me up to ask me what my plans are or having to wake up and watch my nurse because they are about to give me the wrong medication or the wrong dosing of a certain medication. Recent mistakes have not only wasted my time, but they have been detrimental to my health.

On the other hand, I have to remember that this will pass, and I should be very thankful to have VA coverage. With private insurance, I would not be afforded many of the opportunities that I currently have. For all their faults, the VA has done a pretty good job to ensure that I am taken care of. Things could always be better, but they could also be much worse. Second, I have to remember where I came from one month ago. Although I still have the BK virus and the CMV virus (those won't leave until I am off some of the immunosuppressants), the symptoms have subsided, and I am able to sleep much more than before. With the increased amount of sleep, I am slowly recovering my mental capacity. I hope to start reading and studying again next week.

Going forward we just have to pray that my GVHD does not return and that I am able to get off the steroids in a timely manner.