At the very beginning of 2011 Scott's main immunosuppressant was changed from Sirolimus back to his original Tacrolimus. Who knew what a differnce that would make?! After he switched to Sirolimus in early 2010 because of the BK virus, he started having digestive issues, lost 30 lbs that he didn't have to spare and felt generally fatigued and blah. I have to admit that it was a bad time. He cut back on work, was kind of cranky and didn't feel up to much. It was way better than not living, slightly better than heart failure but significantly worse than he feels now.
Each month of 2011 Scott felt a little better. The digestive issues resolved and his energy increased. He gradually added hours to his work week, he joined a gym and he started to have a spring in his step. I cannot believe the difference! He finally knows how it feels to be well. He comes home from the gym surprised and excited about how many laps he ran, how much weight he lifted and how much energy he has left after a workout. I wish I had the motivation he does! The contrast between well and not well is very obvious to me now. It's hard to smile and have a good attitude when you don't feel well. It takes a lot more effort than when you feel good. Now that Scott feels good, he is happier. The chain reaction is that I am now happier, our kids are happier and life is better.
THAT is the way a heart transplant is supposed to work. We met a few people with heart transplants while we waited on the wait list. They all seemed so normal and healthy. There was a time when Scott had been in the ICU for weeks that I felt frustrated. I felt that the only heart transplant experiences we had heard of were so much easier than what we went through. I watched others receive transplants and come and go while Scott had many setbacks and struggled to make tiny improvements. Truthfully I wondered if it would ever be worth it. I felt that life was just not fair. Why did he have to be in the ICU for almost 7 weeks after his transplant? Why did his kidneys have to fail? Why did his new heart not work right away? Why did he get the BK virus and cellulitis and Colitis??? I still don't have the answers to those questions but it just doesn't seem to matter now that those issues have passed.
The fact that someone elses' heart beats inside him will always be a part of our lives. He will always be immunosuppressed. However, sometimes I forget for days that Scott had a heart transplant. Health issues do not permeate every aspect of our lives anymore. Thankfully Scott remembers at least twice a day to take his medications. He also remembers when he can feel blood pulsing in his fingertips after exercise or he can walk briskly without getting out of breath because of the young, healthy heart he has been so blessed to receive. He is no longer fragile. He is strong. He is happy. I am happy.
We travelled to Italy in September. This is us in Milan on our last day. It was all worth it!
