Today I figured I would get on and give you all an update from the clinic. Right now I have a machine hooked up to me and it is drawing my blood out. This is the photopheresis part of my treatment. Some high tech stuff here. I thank God that there are very smart people in this world that can do the research and think this stuff up and make it a reality.
Well things are going pretty good. I was getting a bit nervous last week with my blood counts. My plateletts took a significant drop. From about 175,000 to a low of 77,000 in about 4 days. Certainly not the lowest they have ever been, but when counts start going down it puts doubts in your mind about how well the transplant is holding up. All of my other counts were doing fine. As of right now my plateletts seem to be on thier way back up, and the others are up and holding. I get another bone marrow biopsy done next week, so that should be good at confirming that things are going the way they should be. Along with that I have another pulminary function test, to check my lungs and stuff.
My doc has been reducing my steroid level pretty much weekly at this point. I started at 75mg twice a day and now I am at 40mg in the morn and 10mg at night. Some of the common side effects are going away, but I am still diabetic and checking my blood sugar 3 times a day. the diabetes is getting better as the roids get lower. Now however the roids are causing muscle deterioration in my legs. Even being on the treadmill for an hour a day isn't helping much. I have started leg press on the bowflex, which seems to be helping. The trouble I have is with stairs walking up hills. My legs get fatigued quickly, then I have a hard time standing up.
Two weeks ago I got and immun system booster, and a bone enhancing agent. The roids can give you weak bones and they can break easier. I just do what they tell me to do. They are the experts, and I have to trust what they tell me.
well anyway, things seem to be more on an even keel at this point. The GVHD is somewhat stable with the roid reduction and the photo, so that is good. I have been eating well and been getting a little more active. Now I am Suzy home maker and I keep the house clean, do laundry and make dinner for my wife most of the time. I have been able to do a little shooting which has helped make things feel a little more normal. I am suppose to be going to a machinegun shoot this weekend, but it's 2 hours away and I don't know if I feel up to it right now.
Oh, yeah I got hair back. Woot! Seems kind of strange. I have not had hair in months. Now the hair on my head is growing in half light brown and half gray. It is very fine and straight and an arrow. Normally my hair is dark brown and a little wavy when it gets longer.
Well when I am not going to clinic 2-3 times a week still I stay at home and organize my house and play on the old computer, when it's not driving me crazy with the NV4_disp.dll BSOD. That is another story.
Things are going and pretty well I am alive I feel good, the road is just a long one.
That's about it for now. I am sitting here still connected just waiting for the hot PA to come down and put another stitch in my central line to keep it in place better. Her name is Jamie, she is a bit sedistic, but wow if she isn't good looking.
Never give up! Never surrender!