CF Happens

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

recent posts

  • 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…

  • Me Feeling “Good” Has Come To A Screeching Halt!

    (Sorry for the long post. I needed to explain some things)

    I’m back to the feeling like sh!tola. That’s me putting it nicely. haha. I started not feeling great a few days ago with headaches that went from the top of my head down into my neck. Next up was sinus drainage in the back of my throat.

    NO, I typically do NOT have sinus issues. I “grew out of” all the CF sinus crap I dealt with as a kid. I had multiple sinus surgeries as a kid (I can’t remember how many) and 1 as an adult about 22 years ago!

    Here’s a quick explanation on sinus issues and CF: Sinus issues go hand in hand with CF. CFers commonly get sinus polyps (pockets of bacteria/infection) which end up needing to be surgically removed as well as having the sinus cavities cleaned out in general. Those polyps can, and do, increase lung infections (CF exacerbations) because the sinuses love to share bacteria with the lungs. It’s very rude if you ask me.

    Ok, back to how I’m feeling. When the sinus drainage started, so did an increase in my cough. It was/is a very deep rattly and wheezy cough. It’s the kind of cough that if I cough really hard, I see stars. Yay me! Haha. My lungs are very irritated and ticked off and I don’t blame them. The problem with having sinus drainage going into my lungs is it pisses off the bacteria (pseudomonas) that lives in my lungs all the time.

    I sent my CF clinic a message yesterday but it was CF clinic day so I didn’t hear back from them until today. They asked me to do lung functions on my home spirometer. I knew it was going to be difficult to execute with as much as I’m coughing. I knew they were going to be down. I was able to do 2 tests. Both tries were 26%. I know it’s hard for some to hear and process/accept that my lung function is as low as it is. Just know, this is the nature of the beast that is CF. I’m not at all surprised that my lung function is as low as it is. My lungs are really diseased in general and my asthma is really bad in general. Can’t change how bad my lungs are. There’s no reason in questioning it or overthinking it when there is nothing you can do with things that are irreversible.

    With that said…the treatment plan is IV Zosyn 4.5 g every 6 hours for 2 weeks at home as well as a long prednisone taper. I had a whopping 30 day break from IVs and a 19 day break from prednisone. Like I said before, having reoccurring lung exacerbations is just how things go with CF as the disease progresses. Side note: I’m negative for Covid, Flu A and Flu B. I’m sure someone is curious and/or thinking it might be 1 of those 3 things. Haha

    I know many people ask, “why can’t you just get a lung transplant now?” It’s not that simple. I wish I could tell you it is but it’s not.

    With it being a holiday weekend, there may be a delay in me getting the IV Zosyn and IV supplies. The NP called in oral Levaquin to Walgreens along with the prednisone. She said for me to take the Levaquin IF there’s a delay in getting the IVs AND I start feeling worse. Unfortunately, oral antibiotics do diddly squat for me when it comes to treating the actual infection flare which is why we bypass them and go straight to IVs. I’ll update later when there’s something to update about.

    Until next time…