I did an interview yesterday for The Waterloo Record and the reporter said that sitting with me is "like sitting in a room with a hummingbird." That's how I feel sometimes. The sensations in my body have changed since transplant and I'm re-learning how to read my body. Sometimes I wonder if the LVAD was more peaceful...
I want to stop for a minute and say something about all of these medications. Bottom line, my heart would be no good without them. All of us transplant recipients complain about the meds and their side effects but we all appreciate them. The chemists, doctors, researchers and everyone involved in their creation and growth should be commended for their work. Keep up the good work!
Your prograf boxes are so different from ours hehe.
ReplyDeleteYou will get used to your body again kinda like driving, one day you will look around and think, wow did I just do that? t came so naturally.
The meds and side effects are irritating, but they do settle, and the do get lowered. At one point, I was on 1mg of prograf twice a day, that was just amazing.
Oh and a good tip I found useful, those week long med boxes, that you can take each day out of, I put velcro in the bottom, then the other side on the bottom of the box. It saves keeping the tray flat so they dont fall out, but if you need to take a day with you, it just lifts off.
Andrea - Sorry to hear about the rejection. I was hoping you would get good news, but my daughter has had two bouts with level 3 rejection in the first six months and she just got her second zero this week (not in a row...she got one almost a year ago as well), after a year and a half. So, hopefully once they figure out the med levels, you will see some zeros as well. Glad to hear no hospital time! And I can so relate to your views on the meds. All the side effects, all the remembering to take/give them, all the changes in levels to deal with the results of tests and biopsies - and yet, they are life-savers! I will think positive thoughts for your next biopsy - when will they do another?
ReplyDeleteOh I love the velco idea! Something so simple!
ReplyDeleteI go back for another biopsy on February 2nd. I guess the extra prednisone will at least hold me off next week and we'll see what happens then. It's nice to have a hospital break.
Thanks for sharing all you advice and experiences. It really helps me deal with all of the challenges.