Friday, April 29, 2016

List

Somehow when I returned from Cleveland Clinic I had a whole list of things...
1. The meningioma has grown. It is now time to take action before it presses into the optic nerve and causes issues. Because of the area it is in, they want to do Gamma Knife Radiation. I will be meeting with the neurosurgeon soon.
2. At a little over two years out I am suffering from bone loss due to the transplant drugs. (No, you are not getting taller... I am shrinking!) They have added a weekly oral bone drug to my regimen. Hopefully this helps so I can avoid shots or infusions.
3.We have switched my main anti-rejection drug from Tacrolimus to Cyclosporine. Cyclosporine was considered the gold standard, the original anti-rejection medicine that was used for many years before Tacrolimus became available. Unfortunately it is nasty. Each capsule comes in a foil pouch, not to be opened until use. I realized when I first took it why it comes in a foil pouch. It smells like skunk. That's why it's in a nice little foil pouch. It's like a little skunk bomb when I open it, and I have to open several foil pouches twice a day. How pleasant. Anyway, the switch is happening in hopes it will help with the migraines. Anything to help keep me out of the emergency room. I am still ending up there about once a month. Anything is worth trying so I am glad the transplant team is finally playing around with the big meds a bit.
4. I have another case of tendinitis. Different leg, different spot. Yes, it hurts. But, I don't know why. It just happened. Didn't do anything to it. But, it's not too bad. I need to limit walking, especially downhill, and I have some special stretches for it. It is slowly getting better.
5. Cardiac function looks fine. Even though my heart rate is still high (and will probably always be) due to the heart failure in the past, considering everything, hey... that's okay!
6. Spirometry readings are good. Lung function is wonderful. Thank you to my donor. I wouldn't be alive without you. And despite everything, I am not complaining.

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