*I'm not sure what's going on with the date in the header. I actually wrote and posted this on Thursday, Sept. 24. The appointment occurred on Wed., Sept. 23. Thanks for catching it Ronni.
Yesterday was an extraordinarily long day that started at 2am and didn't wrap up until midnight. My first appointment in Houston was at 7am and since I couldn't get it moved, Chris and I left the house at 2am for the five hour drive. I'd managed to get a solid 4 1/2 hours of sleep before we had to leave, so I took the first shift driving, giving Chris a chance to sleep on the way up there.
On the schedule for the day was a 14 vial blood draw, bone density scan, complete pulmonary function test, bone marrow aspiration and biopsy, one year transplant survivor follow up visit, and a meeting with my transplant doctor.
The first two events were fairly routine and done within a matter of minutes. The complete PFT took longer than it ever has in the past. It involves a series of breathing exercises to measure the capacity of your lungs and can usually be completed in under 15 minutes. I had to repeat the first test 7 times because I kept failing it. I didn't fair any better with the next two. While trying to fill my lungs to capacity, I developed a pain in the right side of my chest. Every time I felt it, I would stop inhaling which directly impacted my results. I told the tech about it and he felt that it shouldn't be an issue.
When I met with the APN for my BMT survivor meeting, she showed me just how poorly I had done on the PFT's. She had results from the last two times I'd taken the tests. One directly after my transplant and one the day I was released to return to BR. I'd lost about half of my ability which is definitely not good. I was also given the results of my bone density scan. I've lost over 15% in both of my hips which means I'm now osteopenic. This is just a step up from osteoporosis and explains why the PA doing my bone marrow biopsy kept complaining about my bones being soft. Normally, they complain about how dense my hip bones are and how hard it is to get a sample.
To help slow the bone loss, I have to do weight bearing exercises and start taking supplements again. I was taking calcium and vitamin d following the transplant, but had to stop in December when my liver started acting up. My team has shifted their view of the risk/benefit of supplements to my health versus not taking them and babying my liver.
The tests that measure my liver function are still elevated and my iron levels are still too high. At some point, I will probably have to take drugs to help my liver shunt the extra iron it has accumulated due to all of the blood transfusions that I've had to have over the course of the last three years. At the moment, my doctor wants to continue monitoring the situation.
I discussed the chest pain that I was having during the PFT's with Dr. K. and she speculated that I might have a cracked rib or a lesion on the bone. Just to be safe, she ordered x rays of my chest and ribs and asked us to stay overnight in Houston so I could have a CT scan today. The x rays showed that my ribs are fine and that there are no lesions or breaks. The right side of my diaphragm appeared elevated and according to my doctor, appeared to be getting irritated by something underneath it. This makes sense, since the position of the diaphragm correlates to the site of the pain.
The only appointment that I could get for a CT scan today was at 8pm so we elected to have something scheduled on Friday. We drove home so Chris didn't have to miss anymore work and the plan is for me to drive to Houston on Friday. Chris is hesitant to let me do this alone, but he recognizes that it's something that has to be done. I feel fine and so long as I don't take in a really deep breath, I don't have any pain.
I'm still dealing with the back issue as a result of the accident. Dr. K. gave me permission to see a chiropractor so long as I emphasize to them that I'm osteopenic. I still have to deal with the claims adjuster to get everything straightened out. If anyone can recommend a good chiropractor in Baton Rouge, I'd really appreciate it.
My sole complaint about this visit is that as a result of having a bone marrow biopsy, I can't shower for 48 hours. This is making me a little crazy, but I'll deal. The results from the aspiration and biopsy won't be in until next week, but my blood numbers have improved over last week's and I'm not showing any abnormal cells, so the team doesn't expect anything dire.
I'll post more tomorrow night when I get in from Houston and find out what's going on in my chest.