Day 67! I am two thirds of the way to Day 100 - the theoretical day when I get to move back home. Keeping my fingers crossed! Once I pass that Day 100 threshold, I will still have to come for weekly appointments, but it will be so nice to be home and sleeping in my own bed most nights. And seeing my children every day!!!
The last week or so my counts for various things have been all over the place. My platelets rise and fall. My red count was down until I got a transfusion. My whites were WAAAAAAAAY down until i got a couple of neupogen shots. And my cyclosporin levels have gone crazy back and forth. Yesterday was my regular OTU Clinic visit. The good news we got then is that my new bone marrow biopsy looks no different than my 30 day biopsy, so at this point we are not seeing any MDS trying to return. (The MDS I had was particularly bad as it was a #7 chromosome deletion and there is a possibility it can come back. I am visualising NO footholes for it!) So far they have found nothing wrong with any of my liver levels, kidney function and stuff like that. Some tests are still outstanding.
The doc decided that we now consider bactrim off limits. Before it was merely stopped temporarily, but they are now thinking it was at least part of the cause of my counts dropping. Instead I will be getting monthly treatments of pentamidine. Now this is an interesting thing. I have to sit in a straight chair and be completely enclosed by a clear plastic tent. They give me a breathing apparatus with the medication where I breathe in through a tube and out through my nose. It lasts about 5 minutes or so. And an electric fan/filter in my tent is running the whole time. Whilst I was sitting in the tent, they closed my cubicle and ran Mike out. The pentamidine is supposed to coat my lungs and help prevent PCP pneumonia. (People with reduced immunity are at risk for getting it, so they proactively treat all transplant patients.) Have to say the five minutes breathing in the tent once a month are easier than taking that giant pill three times a week. And it doesn't make my counts drop!
So a recap on my counts as of yesterday:
Neutrophils had dropped to 0.3, but were back up to 0.7. Barely out of neutropenic, but I'm hoping they are going to continue to go back up.
Hematocrit had gotten down to 28, but with the transfusion is up to 30 and I can breathe easier.
Platelets were at their lowest in a while at 134, but still considered within normal. Still not sure why these are down, but they told me it is not something to worry about right now.
I am visualising all counts improving as we don't have MDS causing a problem. It still could be some GvHD and they are watching my symptoms. I started getting a few little ulcers in my mouth on Monday. They said that doesn't normally happen until closer to day 100 with GvHD, but since I've reached some of the other milestones more quickly, I could be having a little of it. They have given me a prescription mouthwash that has lidocaine, benadryl and something else that I'm supposed to use before eating. I also have a steroid ointment to use whenever the rash comes out on my forearms and hands. As long as I am able to eat and take my meds, they let me stay outpatient. But if my mouth gets to where I can't swallow, I have to go back in hospital. Have I mentioned it is very beige there? Literally. Everything is painted beige on that floor. It's enough to make a person ill. So, I'm thinking positively and hoping for the best!
After I got home from Clinic yesterday, my nurse called. After dropping to 200 something, appparently my cyclosporine level jumped to over 600. No GenGraf for me last night or this morning. I had to go back to lab this morning and get enough blood drawn to test the levels again, and I don't take GenGraf until they call and tell me how much to take. It's really odd to get a jump like that and no one seems to know why that would have happened, since I haven't had a change in diet.
Where we are now is watching and seeing how I progress. Hopefully my counts will start to go back up on their own soon and the cyclosporine will level out. My next regular clinic appointment is Friday, so we will find out more then. POSITIVE THINKING!
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