I have been connecting with others, both those who are post transplant and those who are waiting. This is my work now, and it feels very right to give back. I had an interesting experience today around this topic in a response to my blog. Someone asked if the mom of a young man waiting for a heart transplant should read it. I was surprised by the silence in the room.
11/23/2011
We almost have the cocktail right! I was afraid to talk about it being so good. I kept knocking on wood, and then one night - boom. Woke up with a hammering head at 3 a.m. and already nauseated. Knew I was in for it, and I was. Bad, bad rest of the night and all the next day. Even the liquid morphine barely helped, but it did make me sleep a bit.
11/15/2011
Blessed are we (well almost, but that’s for later) -Tacrolimus levels are stable, no headaches. Life is good, very good. We had our angst day, our annual angst day, the day our son goes to his pediatric cardiologist exam - the ECHO result, the day my life will either stop or sing. It SANG again. His septum is beautifully thin, no cellular evidence of disease. His physician does not believe he will develop it. We had the gene testing discussion.
11/09/2011
It was my birthday weekend and it was very special! I spent it with family and friends. It’s what I have learned is most important to me. I knew it would be emotional on many levels - for many folks as well as from many folks - and it was. I am just downright glad to be here celebrating another one. And when I look back at what has gone down this past year, I almost feel I don’t have a right to be here.
11/02/2011
Question #2. What things am I able to do after transplant I couldn’t do before it? Again, I wanted to say something profound, something a little different, yet truthful. Here’s what came to me last night. I see things a bit differently now, a little brighter. I am able to let go of the little things (well as long as I am not on high dose steroids!), take a deep breath, shrug my shoulders and do things that matter to me personally. Okay, so that’s the psychological side.