CF Happens

Sometimes in life CF (Cystic Fibrosis) happens…pun intended

recent posts

  • Impromptu CF Clinic Appointment Last Week

    As I mentioned in my last blog post, my doctor wanted me to send in weekly lung functions that I do on my home spirometer while I finish the long prednisone taper. I sent them in on June 10th and they were 27%. I then sent them in on June 18th and they were 26%. My home spirometer is obviously not as accurate as the hospital machine. My home spirometer is more so used to keep track of trends. This way I can see when there is enough of a change in my numbers that would warrant me needing to be seen in clinic.

    With the numbers of my lung functions done on my home spirometer that I sent to my doctor, he wanted me to be seen in clinic and do to “real PFTs.” “Real PFTs,” means he wanted all of the tests…spirometry (regular lung functions), lung diffusion and lung volume. My lung functions were 35%!! Thanks to prednisone for the boost as usual. Prednisone likes to give me “fake” numbers…as in prednisone’s job is to help open my airways, therefore it can give extra good numbers. I’ll take them when I can though. Haha

    They also wanted a chest x-ray and blood work. My chest x-ray was unchanged (my normal). With the labs, they wanted to check a few things related to asthma and a fungal panel to make sure we’re not missing something there.

    We’re not changing anything as of right now. My last day of prednisone will be July 11th. The goal is to not need it again, or at least not so soon. Being on prednisone as often as I have been is NOT ideal but to get the relief I need and stop the tightness, wheezing and excessive shortness of breath. That’s all I have for now.

    Until next time…

  • IV Antibiotics Are Complete…Prednisone Taper Continues

    14 days of IV Zosyn is complete! As far as antibiotics go, I do feel “better” in terms of the lung infection (CF exacerbation) part of this new sh!t show of being sick (again so soon).

    As far as the lung/airway tightness, wheezing and shortness of breath goes, I’m “better” than I was 18 days ago when I started the 60mg of dose prednisone. I wasn’t feeling any relief as far as the tightness, wheezing and shortness of breath goes when I dropped to 40mg of dose after 7 days on 60mg. I ended up asking my doctor to extend the 40mg dose for a total of 14 days instead of the intended 7 days. He was ok with extending the 40mg dose. I am finally feeling some relief. I’m not as tight and wheezy. The shortness of breath is getting “better,” as in not as frequent and isn’t taking me as long to recover, so I’ll take it! I have 3 days left of the 40mg dose. I will then drop to 20mg and stay there for 14 days. Then one final drop to 10mg and stay there for 14 days. The hope is that I’ll be able to be ALL done with the prednisone…for now. Fingers crossed!! 🤞

    My doctor wants me to send in home spirometry (lung functions) while I’m on the prednisone to keep a closer eye on how they are doing. I did them yesterday morning after my breathing treatment. My FEV1 was 27%. Two and a half weeks ago, when I started feeling bad (one day before starting the prednisone), they were 26%. I will NOT be surprised at all if I’m not able to get my lung functions back up to what has been my baseline numbers (normal), which has been 30%-32%. I’m guessing that my “new normal” will be closer to 26%-29%. It basically boils down to the really bad asthma attack I had that took me to the ER, which ended up being a result of the parainfluenza, wreaked havoc on my lungs and did some significant damage. I know some people dislike this saying but, “it is what it is.” Once again I can’t change the damage that’s done. I just have to make the best of what I have left, as far as lung power.

    I always feel like I need to put “better” in quotes because “better” is relative. I’m never going to be “better” in terms of CF as a lung disease and the progression of the disease. Yes, I usually do feel “better” than I did when I first started IV antibiotics and prednisone but I’m never going to be ALL the way “better” in the sense of being healed or cured. It just doesn’t work like that with a chronic genetic disease. I don’t say that to be a Debbie downer at all but I’m a realist. I want the people in my life to understand and know that this is just how the disease process of CF is. I can’t change it, so there is no point in dwelling on it and making myself miserable over things I have no control over. I do my best to live my life to the fullest, to not be afraid to make future plans and to make as many memories as possible with those that I love and care about. I don’t want to look back on my life and say, “I really wish I had done more in life…” I make the plans and if we have to change them or maneuver things to make them work, so be it.

    Trust me, I know people don’t know what to say when I sick, yet again. As I’ve said before, simply saying “I don’t know what to say,” is perfect because it’s just the way it goes.

    Until next time…