I’m too tired to write much.
I’m back in San Antonio. But here is a recap from my Houston visit.
No diagnosis on the neck swelling/pain. Cat scan was normal reading. They mostly concentrated on getting rid of the bronchitis and why I keep having fevers. Had a chest x-ray – all clear (yay)
Had some blood work done. All good, low magnesium, low immunosuppressant level (no bueno)
Met with Dr. Q, my MDA transplant doctor. Tells me that I need to up my magnesium and my tacro (immunosuppressant). I got a rash the day before my appointment. They did a skin biopsy (results not ready yet) to see if it is graft vs. host disease. I got a few stitches, but it wasn’t really painful.
Dr. Q thinks that because I stopped the steroids while my tacro level was so low (since Feb, but hey… they didn’t tell me to take more) that my body may be overwhelmed with graft vs. host issues.
He also got some blood tests to check some muscle level to see if perhaps I have gvh in my muscles, which would explain the extreme shortness of breath and the muscle pain. He also said that I really do need to find an oncologist in San Antonio, and a primary care physician. These might be tricky as I’m about to lose my insurance and have some issues with Medicare (missed some dang deadline – long story). He also told me that Dr. B at the transplant clinic should be my primary transplant doctor and that I should only go to MDA for checkups. This is not sitting well with me as every time I see Dr. B or anyone else at Methodist I end up with some big out of pocket expenses.
I’m pretty frustrated with all of this. I still feel terrible and am living on vicodin. I’m try to be more positive about this and move more, but I feel like my muscles are on fire. I’m just a mess. Truly.
Zoe is great. She’s been so sweet to me. I missed her so much and am trying so hard to feel better so that I can do more things with her. Lots of school, soccer, and girl scout activities coming up that I need to do.
Oh well. I can do this. I have my family and their love.
Your assignment today is to start eating healthy. Be good to yourself. Get a massage. Take a bath. Hug someone.
P.S. Happy belated birthday to my cousin Rebecca. She’s my godmother and is super cool and awesome!!