So a friend of mine was giving me a hard time yesterday about not writing for a while. Sorry about that. I do have a lot to talk about.
I have been home for the most part. Still going to Rochester once a week for doctor appointments. This time away from Rochester has allowed me to make it to a couple of family reunions. For most, this was the first time seeing me since the transplant. Most are suprised at how much weight I havr lost (about 50 pounds) but every comments I am looking good. I am glad I make both reunions this year.
Andy's Dad Ira, my father-in-law, took me to my appointments the week of July 9th. I had been hoping that they would give me a few weeks off. Unfortunatly that Sunday I started not feeling well. No fevers, luckily, which would have put me in the hospital. It turns out it was a bit of a sinus cold or virus. But that Sunday and Monday, the day of my appointment were miserable. So the doctors said they wanted me back that same Thursday. Not allowed to go home. So we settled in. Then all of a sudden Tuesday afternoon, I just felt better. Appitie came back and all was good. Ira and I went out for Prime Rib and I ate a whole 12oz steak. Which probably had been the most I had eaten in a very long time.
Since I was feeling better, I asked the clinic to move my appointments up to Wednesday and they did. I was so much better, so the doctors let me come home. It was good to spend time with Ira. I am glad I styarted feeling better on this trip and we could actually enjoy the food and company.
Next appointment was the 24th. Tom (Rogene's husband) took me this time. Tom and I get a long quite well and it been great having both Rogene and Tom involved more with us and the kids through this whole ordeal. This appointment went great.
First, I didn't have to come back for 2 weeks. Which will be the first full week of August. At that time they will conduct all my 100 day tests that week. 100 days has been that huge milestone. All my counts look great. Liver, kidneys all doing great. Rash on my arms was getting better. Hair started coming back. They took away a few meds and lowered my tachrolimus (the immune suppressent). Now, this could cause some graft vs host to show up. But a little will be ok.
A few weeks ago, i had what is called a Chimerism Study. The tests how much of the donor cells have engrafted in my body. I had it once before. the results before were that my blood cells were 100% engrafted (100% donor). My immune system was 90/10. (10% still my cells). This time the results were 100% engrafted on my blood cells, but 80/20 on my immune system. The doctor said that this was not a big deal. It was within the range of error on the test (it may not have really changed) and the immune suppressents I am on can prevent things from going 100%. So lowering my meds, which they did, is an effort to make this "flip" or get to 100%. They are telling me not to worry.
So I am home. Biggest issue is getting my energy level back. It's not so much energy as getting my strength back. I have lost so much muscle out of my legs that I get tired quickly just carrying my still big self around. Appitite is good. As long as things stay good, I'll likely return to work in a few weeks.
Andy will be going back with me for the battery of tests. Getting closer to day 100. All is good.
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