CF Happens

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

recent posts

  • 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…

  • Update On All Things IVs & Prednisone

    I’m a pro at getting sick and needing to start IVs on a holiday or close to it. This round of IVs is no different. Haha. The orders for IVs didn’t get to the home infusion pharmacy until basically closing on Friday. With that said, they weren’t delivered until 7pm on Tuesday night. I was able to get one dose in on Tuesday night.

    I started the prednisone on Saturday. I held off on starting the oral levaquin for the simple fact that oral antibiotics don’t work for me anymore. They used to “bandaid” things and get me by. Now, I’m not willing to deal with the side effects some of them cause if they aren’t going to improve my symptoms at all, especially if I’ll be starting IVs soon. Oral levaquin gives me pretty bad arthritis joint pain, mostly in my knees. It’s no fun.

    How am I feeling now you ask…well, basically the same. No big improvements besides not feeling like major dog doo. I’m still getting out of breath easily, coughing a lot and my body is really sore from coughing so much. No new pulled muscles though, so I’ll take it.

    You have to remember, antibiotics don’t work their magic like they used to for me. After 45 years of taking antibiotics and weeding out what will and won’t work as far as my bugs (bacteria) go as well as what I can actually take and I’m not allergic to, I’m limited.

    Unfortunately, this is the nature of the beast that is CF progression. My lungs hold onto all the bacteria and with all the scarring it’s just there and not going anywhere. When you add in my bad asthma and significant bronchiectasis, it is what it is. I can’t change how bad my lungs are and I can’t make them better. There are no essential oils, magic spells or other random things you find on the internet that will change the reality of it.

    I don’t say this to be “woe is me” because it’s not that at all. It’s to educate the real deal life of CF. There’s no ifs, ands or buts about it.

    Yes, it sucks but it’s my reality. I’ve had “a few” years to come to grips with the inevitable. No worries, I’m ok. I mean obviously, I would rather it NOT be my reality but I’m ok. I promise! Remember, I’m too stubborn to give up and quit. I will rest when I need to and keep kicking ass the best I can!

    Until next time…