Two and a half weeks ago I had a consult with a Vanderbilt Lung Transplant doctor. We had a long discussion about my medical history and looked over the results of my latest Pulmonary Function Test (holding steady with FEV1 at 22-24% (“severe obstruction”), a new CT of my chest (“stable diffuse brochiolitis obliterans related to Graft vs. Host Disease”), new chest x-ray (“hyperinflated lungs with bronchioectasis”), and a 6-minute walk test (“44% of predicted indicating severely decreased exercise capacity”).

Prior to the appointment, I received a packet in the mail from the transplant team with some general information and brochures. I knew that a transplant was serious stuff and I knew that rejection can be a big concern (and I’m already comprised of myself and my bone marrow of 100% donor cells, so how does a third person enter this picture?) However, I was really surprised that not only is the first year challenging, but the average life span after a transplant is 6-8 years! My regular stem cell doctor hasn’t given me anything close to an “end date”, so that was pretty shocking to read. My quality of life has been greatly impacted, but not to the point that I want to shave off years to breathe fully for a while.

After speaking with the lung transplant doc., he felt like my main disqualification would be my previous lymphoma cancer diagnosis.  I’m almost 3 years cancer-free (yay!), but they generally have a waiting period of 5 years.

He called me last week and verified that they were denying me because of this rule, and that if needed they can re-evaluate me in 2 years. However, he mentioned how impressed he was with the study drug that I am on.  He said I’m very stable and that’s good, and he was actually talking to my drug study medical director to see if he may be able to try it on some of his lung transplant patients. I had learned during my consult, that most transplants eventually end up right in my type of situation as the years go on.

Lungs are the least successful of all transplants.  I had no clue.

Right now, I’m happy to be denied. I really don’t want to go through another transplant (he said it would be similar to the other two [stem cell] I’ve been through) and I even question if I have the stamina right now.  I’m still recovering in so many ways.

So, I’m praying for healing from God. I’m meditating on the time Jesus healed the sick in the Bible. I’m visualizing the Holy Spirit living within me and repairing my lungs. And I’m thanking God for the breath I have. I also know that new treatments are constantly in the works and who knows what breakthroughs will be made.