CF Happens

Sometimes in life, CF happens…pun intended.

recent posts

  • 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…

  • 2 Weeks Off Of Prednisone As Of Today

    Today marks 2 weeks of being off of prednisone…finally! It has been an adjustment for my body after being on different strengths of steroids for 5 weeks. It kinda feels like my body said, “WTF!! Why did you take the steroids away!?” Haha.

    I did lung functions on my home spirometer to see where I am with no steroids in my system for 2 weeks. They are down to 29% which is no surprise to me. The 36% I got at my last appointment on the 8th, was a “fake” number with it being so close to the day I stopped prednisone. Steroids help open my lungs and airways up. Having the steroids in my system can give, and does give, skewed numbers on my lung functions.

    With as big as a hit as my lungs took with the parainfluenza and all the asthma crap that the parainfluenza caused, I was pretty sure my new baseline (my “normal” lung function) was going to be closer to 27-30% now. So this is no surprise to me.

    CF is slow progressing disease, so it’s a given that my lung function will decline over time. Of course I would love for that not to be the case but this is life with CF. I can’t change what CF does so I just roll with the punches and make the best of it.

    I updated my transplant coordinator on how I’m doing since all the craziness happened. She said they are still good with seeing me in September, which is already scheduled. As usual, if I need to be seen before that I can always let them know.

    NO, I’m NOT listed for lung transplant. I’m not at the point of needing to be listed yet. With where I’m at, in regard to my lung functions, if I drop lower and have more limitations in every day life and have fewer treatment options, we will entertain more serious talks about transplant.

    Please remember just because I’m followed by my transplant hospital/clinic, this DOES NOT mean that I’m listed or ready for transplant. This is simply so that they can keep eyes on me for themselves. This way I can keep all my testing up to date if I were to have a rapid decline and need to be listed quickly as well.

    I wish transplant was a simple process but it’s not. This makes it hard to explain to non CF people and/or anyone who doesn’t understand the lung transplant process. Yes, it would be easier to just say, “yep, I think it’s time, sign me up!” That’s just not even close to how it goes. Haha. My body is the one who is in control, so I just listen to it.

    That’s all I’ve got for an update. I hope y’all have a great week!

    Until next time…