We are back from our Mayo check-up visit. All is good, all the tests came back with good results and the main one we worry about is signs of rejection and the test results showed NO REJECTION!!! There are a few tests that are still outstanding but they are minor and do not deal with the condition of her heart, more of what is causing some side effects she is dealing with. There are still signs of EBV (Epstein Barr virus/mono/etc) from her new heart (donor had it and she never has) and her immune system is a little to much suppressed so they are reducing some of the anti-rejection meds to try to let her fight the EBV herself. Assuming the next checkup next month is still good then they will switch up some of her anti-rejection meds. One of the current ones is hard on the kidneys but lets wounds heal where the one she will switch to is easier on the kidneys but major wounds heal much more slowly. More good news is that in about two weeks she can reduce her steroid again!!
We got lucky this time and got to stay in the Transplant House, being a holiday may have helped us get a room there. There was only one couple who was still there that we knew while we were there for the 3 month visit. She had a lung transplant and moved into the house a few days before we were let go. We had met them earlier when they were up for a normal pre-transplant meeting. I am please to say she is doing well! For those that know the house our room was on the first floor right outside the kitchen. We did find out that some rooms are bigger than others and we had one of the big rooms while we were there for 3 months, it was about 3 feet longer than the ‘normal’ rooms. We consider that a good thing when we were there for a longer period, we just didn’t know how lucky we were.
All is all a great visit and they said that soon we will be moving to checkups every two months. But of course that could change, everyone is different you know…..
Thanks for checking in.
