Sunday, March 24, 2013

2nd listing?

Greg and I met with some of the team at Spectrum this past Thursday. Some of you may know that they have been doing heart transplants for the past few yrs but just recently in the past few mos became credentialed through UNOS for lung transplants.

Michigan is in a different region than Wisconsin so if I can list in another region I would increase my chances to get lungs.
Spectrum has recruited an A+ team for their lung program and I've done a lot of research. The facility itself just has not been doing transplants that long.  Their are pros and cons to every facility and ultimately it comes down to the surgeon and transplant team.  I will have an incision from one side of my chest to the other and I really want skilled hands making that incision.
My meetings this past Thursday were with financial, transplant coordinator, MSW, dietitian, a pharmacist, Infectious Disease, and more labs. I was a little disappointed that some I met with seemed unaware that I was already listed or that I had already endured a battery of tests this past Dec.
Spectrum's team wants an abd/pelvis CT and a test to check your diaphragm's function--Wisc does not require these so this is more testing needed.
I've had so much radiation the past few yrs I worry about that and how that increases your cancer risk.
I still have not met the surgeon at Spectrum and he is going back to England for the upcoming wk so the team will meet the following wk.
I did learn more about the post-transplant meds from the pharmacist meeting and how most of them increase your risk for diabetes, hypertension, and high cholesterol--oh boy! And these meds are lifelong and expensive! Each center does post-transplant meds a bit differently as well.
Also these meds increase your risk for kidney failure, skin cancer, and B-Lymphomas--another Oh boy!!!
This is the info that makes me want to throw up. Do I continue? I feel I have little choice as my lungs are failing and there is no crystal ball to show my future.
So, I will trudge along this surreal experience and remember the Tim Tebow quote in my earlier blog.
Pray for perfectly matched, healthy lungs and that I can tackle this demon and come out successful on the other side.