Friday, August 21, 2009

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.


Ronnie "Sickboy" Sharpe said...

That's great news about your numbers!!! How are you feeling?

God will absolutely provide you the right lungs at the right time or He'll give you the energy to sustain activity to get those numbers even higher!


Anonymous said...

wow its good to see those numbers coming up...I bet if you worked hard enough you could get them to 50's!!! Good Luck!