My routine is off, but it’s not necessarily a bad thing. First of all, I woke up Friday sick. Headache, stomachache – overall not feeling good. Mom had me take a nausea pill, but I still threw up. It was pretty much nothing because I hadn’t eaten yet. So I didn’t eat. I went to Moffitt for my scheduled lab work and we told them what was going on. While in the waiting room, I kept nodding off and finally we saw a PA. Although a flare up of GVH was a possibility, we all felt that it was the increase of 4 additional pills of magnesium that Dr. F increased in my meds on Wed. In the end, my mag was decreased back to 12 pills versus the new 16 and my pregnastone (steriod) was increased a little just in case. I was also told to consistently take the nausea pill on Friday so that I could eat and take my pills. On Sat. and Sun., I was told to take it before meals. Then, I was to see a PA again on Monday to check on my progress By Friday afternoon, I was feeling better and I did well over the weekend.
So today’s Monday. I had labs, my bandage changed, a chest x-ray, and then we had to sit around and wait for the PA visit. The visit went fine. My labs were good so no changes were made. He decided to cancel my routine Wed. appointment since he saw me today and Dr. F is in Orlando at a conference this week anyway. I’m to call with any issues. Tomorrow, I have no appointments! Wed. I only have labs now. Thursday I have no appointments! Friday I have morning labs and afternoon PT, which isn’t the greatest but it’s how it worked out.
Speaking of PT, last Thursday PT re-evaluated me and luckily were able to justify continuing with my sessions because my hip flexers are still weak. Basically, I have bending issues. I can’t get up if I squat down too far, and to get off the floor, I have to get on all fours and kinda climb up a wall. I’m still able to have PT 2x a week, but they could only get me in once this week. Next week is weird too, but I do have two PT visits.
So basically, today was my Wed. appointment early. I did get a phone call from the pharmacist to lower my tetralimus (GVH prevention pill) pills from 9 to 5; we can only guess that it’s due to my blood work. Overall, I’m doing well again. I trying to read a book, so far I got through one chapter and fell asleep, waking up a 2AM with the lights on! I’m doing something ambitious and I’m going to make these detailed signs for each of the boys’ rooms.
Thanks to everyone who continues to read this blog. I love the comments and reaching out to others in the world outside my Tampa apartment.
Related posts:
Hang in there Jamie. We are taking with journey beside you and through your blog we can support you.
Thank you for keeping us informed.