I don't know many of us CFers who get excited for clinic days. I know they are always a source of anxiety for me, as I worry that my lung function has decreased or I've cultured some new bacteria. That, however, is the extent of my worry because my CF team is truly incredible. They are always sensitive about my health, cautious about antibiotics, and hopeful for my future. In all honesty, they make it much easier to go through clinic days.
I was extremely worried about this clinic day because I have been fighting a rough upper respiratory infection for weeks now. It is getting better, but I was worried about what damage had already been done in the past few weeks.
Thankfully, when my doctors listened to me there were no crackles, and only a slight diminishing in my upper right airways (which is where the infection has seemed to reside). As for my PFTs, my FVC was up to 156%, and my FEV1 was at 85% which is right where I was before. I was stunned at the numbers. I really expected to be down, but I definitely have an angel watching over me.
With these numbers, it means I continue to up my treatments, increase my exercise, and up my sleep per day to try and continue to kick this infection by myself. It also means that the doctors are 100% behind my frozen embryo transfer!
The other, astonishing news, was my culture results. As of my last culture, the aspergillus that I was culturing has gone, and my P.A. which I have cultured for many many years was gone as well!!! The Cayston is working! Despite the P.A. results, I'm staying on Cayston until we have a few cultures where it's negative for P.A. I'm actually starting Cayston a week early as well to try and help combat my infection so that the P.A. can't take a hold and grow while I'm already sick.
The one thing I have to work on is my weight - I still need to gain about 3 pounds. I'm working on it!! Overall, fantastic appointment, and I just know I am blessed. Truly very blessed.
I was extremely worried about this clinic day because I have been fighting a rough upper respiratory infection for weeks now. It is getting better, but I was worried about what damage had already been done in the past few weeks.
Thankfully, when my doctors listened to me there were no crackles, and only a slight diminishing in my upper right airways (which is where the infection has seemed to reside). As for my PFTs, my FVC was up to 156%, and my FEV1 was at 85% which is right where I was before. I was stunned at the numbers. I really expected to be down, but I definitely have an angel watching over me.
With these numbers, it means I continue to up my treatments, increase my exercise, and up my sleep per day to try and continue to kick this infection by myself. It also means that the doctors are 100% behind my frozen embryo transfer!
The other, astonishing news, was my culture results. As of my last culture, the aspergillus that I was culturing has gone, and my P.A. which I have cultured for many many years was gone as well!!! The Cayston is working! Despite the P.A. results, I'm staying on Cayston until we have a few cultures where it's negative for P.A. I'm actually starting Cayston a week early as well to try and help combat my infection so that the P.A. can't take a hold and grow while I'm already sick.
The one thing I have to work on is my weight - I still need to gain about 3 pounds. I'm working on it!! Overall, fantastic appointment, and I just know I am blessed. Truly very blessed.
I agree that is the worst part of the visit the PFT and seeing if any new bug is growing. Yes, I do LOVE my clinic and doctor!! My doctor is the most dedicated individual I have ever met.
ReplyDeleteYou have awesome PFT results! Great news on your culture as well. I no longer have aspergillus or PA. I culture the usual staph and have had acinobacter the last few months but it hasn't impacted my PFTs or overall health.
Have a great weekend Megan!
I totally agree with you about the dedication of these doctors. My doctors are truly incredible, and I'm blessed to have them!
ReplyDeleteThank you so much for the support. I'm so happy to hear that you no longer have aspergillus or PA. I culture staph as well. I'm lad the acinobacter hasn't impacted your PFTs.