Tuesday, July 3, 2012
Okay, so I'm going to have to start back at the beginning...
I don't know if I mentioned this or not, but back in October of last year my pulmonologist (Dr. Ronn) was worried about my heart and the chance of Pulmonary Hypertension. He sent me to a PH expert in the Valley, Dr. Jeremy Feldman.
I had an appointment with him the next week. He looked at my tests, and set me up with a right heart catheter to check out the hypertension issue (which turned out to be borderline and something we will just have to watch), and he mentioned the words LUNG TRANSPLANT. Scared me half to death, still scares me. None of my other doctors have ever talked about this, and those words just meant that I am worse off than I ever thought I was.
He explained it to me this way. I'm not really bad off right now, but I'm bad enough to be put on a transplant list, and hopefully I'll get one before I get really bad. But if I ever do make it to that place where I'm really sick, then it is better to be on the list now than to wait the time it would take to get on the transplant list when I'm in serious need of one.
So, this is not an emergency situation. I'm still doing good. I'm not perfect, and my lungs are getting worse, but I'm still able to function and do things on my own. My diffusion rate is falling fast (lost a whole point in a six month time period), but my lung capacity is still above 70%. That's better off than a lot of people I know.
After a lot of discussion and many appointments with my doctors I've been in contact with the University of Utah Medical Center's Lung Transplant team. Now I know you're asking yourselves, "Why UofU". Well my insurance won't cover the transplant at the hospital here in Phoenix. So the next best places would be either Los Angelas or Salt Lake City. Since i've got family in Utah, I chose there.
I'm waiting on some information and then we are going to set up the first of many appointments in Salt Lake. After the first appointment they will decide then if they think I would do well with a transplant. Then I take a week and do lots of preliminary tests. After I take the tests an I have nothing else wrong with me (like cancer) then all my information will be presented to the Transplant Board. If they say yes, that I'm a good candidate, then they will put me on the transplant list.
Once I get on the transplant list I'll have to be within an hour of the hospital. That means I'll be moving back to Utah until after I get the transplant. I am so NOT looking forward to spending ANY part of the Winter in Utah, and it could take a while before I actually get a transplant, but it is something that I will have to do.
Thank you to everyone for your support. Let's all pray that I get on the transplant list. This is something that I really need to happen if I want to live a long life.