3 Months Today!

Well, this last month did not go exactly as planned or as hoped for. But, it did go by. I continue to have lost lung function due to the stenosis issue and infection. As Rebec posted, I had the OR Bronch done last weds. It really wiped me out for the remainder of the week, however by friday i was starting to feel better. Dr. Haithcock, immediately said after this bronch he wants to do it again on the 11th. So, that is this friday. The idea being, to stay ahead of the narrowing a bit. Open it up some, wait a week and a half while taking heavy antibiotics and then repeat the procedure. Hopefully, achieving even more dilation the next time. He is very confident that my body will slowly start to finish the healing process around these airway connections and the narrowing will no longer occur.

Right now it is very similar to a chicken and egg scenario. My anastomic connections have not fully healed, so they are probably like an infected wound. This infected wound, like all, loves bacteria. Well guess what, even with the transplant I have plenty of my old CF bugs in my throat area, and sinuses. So, the bacteria trickles down and makes the anastomes it's home. It creates infection which trickle even further down my airways. Since I have the narrowing, I can not clear out those infections, instead my body compensates and takes smaller breathes, without alot of air movement in my lower airways, little mucous plugs and infection stick around. More infection lower down then also leads to further narrowing. So, this is the cycle we need to break. The good news is it should be breakable, and my new lungs continue to show no signs of rejection. It could be much worse.

Not helping this process is the fact that my immune system is a little too suppressed. My white blood cell count was very low. So, low it can not help the infection. When they immunosuppress people they shoot for a low number to avoid rejection, but not totally deprive you of WBC. So, they took me off two of my meds for a few days to see if these levels come back up.

I went to Rehab yesterday and the difference from the prior monday before the OR Bronch and balloon procedure was clearly evident. I did much better and tolerated much more exercise. I still am not back to my week 6-7 level, but I do feel like I can get there. The goal is to really try and keep the airways open this week, let Dr. Haithcock go in there Friday and open them even further. Hopefully, the antibiotics are keeping the infection in check and by next week should feel even better.

Our/my timeline seems a bit in jeopardy now in regards to all of us being back in maryland by Jan 1. But it seems like I may just have to stay an extra week or two. It is still up in the air. The boys and Rebec will go back though and start the school semester up there. We need to start to go on with our regular lives and look at this as just complications that are par for the tx. I really think I should be there by mid-january.

This 3 months as been hard, no question. But it has been filled with happiness, excitement, and hope all at the same time. Something, that pre-CF life right before transplant, did not have.

Again, thanks for reading and following along.

-Mitch