What the???

Well, I went to my CF appointment. Shouldn't I be getting sicker if I need a transplant? My lung functions were good for me. Normally as I do PFTs they get worse. Not today. The more I did the better they got. My FVC =62% and FEV1=42%. I continue to boggle my CF docs mind.

So of course I asked, "Should I still be active on the transplant list." His reply "Yes." So then I asked "What if i got my FEV1s into the high 40s?" He said "At that point I might be comfortable letting you go inactive."

Dr. Z made a good comment to me. He said that he has a lot of patients that have worse lung functions then me (that he hasn't even considered for a transplant) but I have scarring in a unique area which worries him. He does not want me to get pneumonia in my lower left lobe because it could be very bad. Plus, I need oxygen with exertion which plays a role of keeping me active on the transplant list.

So where do I go from here? I guess I can work my butt of trying to raise my numbers more or I can do what I have been doing and just wait around for a call for lungs. Oh yeah, he also made another interesting comment. He said "I doubt the call will come anytime soon." I am so confused.

Anyone that knows me knows that I am not a quitter and will work my butt off to see if I can put off the transplant. I also have to put a lot of faith in God that the call for lungs will come when it is meant to be.

I better get back to work.