CF Happens

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

recent posts

  • Update From Lock Up – Day 5

    As always, mornings are the worst time to ask me how I’m feeling in general. It takes a good hour or two after waking up to get to feeling more human. I need to get upright so my lungs can get oriented. I then need to do all my breathing treatments, do all the coughing to get things moving and settled. With all that said, when you’re in the hospital, the doctors typically do their rounds early in the morning and wake you up asking how you’re feeling today. Good question doc, I can’t tell you yet. I’ll get back to you. Haha

    Here we are on day 5 of higher dose IV solumedrol (steroids). I will get another 60mg dose tonight. We will then go down to 40mg solumedrol tomorrow morning. If I feel like it wasn’t enough to keep things going in the right direction, we will do an extra 20mg dose making it the 60mg total again for the morning dose then stick with the 60mg tomorrow night. We will try again the next day to go down to the 40mg. I am going to let this take as long as it needs to so that I don’t go backwards and end right back here again. As much as I do not like being in the hospital, I know this is where I need to be to get better right now. I’m here until I can get down to an oral dose of prednisone regardless.

    I’ve had people compare this stay to an average CF exacerbation (CF flare up) stay where I would be in for IV antibiotics only. This is a very different type of stay than just dealing with the CF side of things. Honestly, CF is the very last thing on the priority list right now, so to speak.

    As you know, I do all my IV antibiotics at home for my normal “CF flare ups.” Me going into the hospital is not an ideal thing in general. When I go inpatient it just opens me up to every single germ that lives in the hospital that all the regular sick people have that I DO NOT need. I have enough going on to worry about adding anything extra. Some CFers prefer to go inpatient to do IVs and extra treatments. I’m not one of them. I’m very diligent in how I take care of myself. I don’t play around when it comes to my health. I’m already living on borrowed time. Why would I jeopardize the extra time I’ve been given by not doing everything I need to do to stay alive as long as possible. Haha

    So to answer generalized curiosity about how this stay is different, I’ll just say…the focus of this stay is mainly getting my very bad asthma lungs under control. The parainfluenza is what really set off the bad asthma symptoms/asthma attack. The parainfluenza is a tough one to get under control and healed from for a normal healthy person that has it. When you add in CF and bad asthma it just makes things that much harder to handle.

    Like I said before, I’m here for the long haul which is most likely a week to begin with. Yes, I will feel better than I am right now. It’s just going to take a while to get there.

    Unfortunately, life with CF is very unpredictable. When you add in the extras I have going on with pretty bad asthma, bronchiectasis and regular lung damage from having CF (the disease process) in general, it makes it that much more interesting. Haha. This is my normal everyday and I’m used to living it. I’m not saying I am a fan of it by any means but I do what I need to do to keep on living life. I’m nowhere near ready for the finish line of life. I have so many more memories to make!

    Until next time…

  • Update From Lock Up – Day 3

    APOLOGIES NOW FOR ANOTHER WORDY POST. I JUST LIKE TO MAKE SURE I COVER ALL THE THINGS & POSSIBLY ANSWER YOUR QUESTIONS ALONG THE WAY!

    This admission has been a journey of me advocating hard core for myself so far. I’m very used to advocating for myself as it is but this time seems like it’s more involved. I’m ok with that because it means I’m getting done what needs to be done. It helps that my regular CF doctor is in constant contact with the inpatient pulmonary team. My doctor knows me well after 11 years, knows how random my body is and that it doesn’t go by the books. With that said, my regular CF doctor can keep the inpatient pulmonary team up to date on what’s things have worked for me in the past.

    I’ve been on top of insisting that I stay on the IV solumedrol (steroids) for long enough especially before moving down to an oral prednisone taper. Oral prednisone just doesn’t seem to give me great results/relief when my asthma is this bad.

    I’m still on the 60mg IV solumedrol twice a day. This morning was my 6th dose of the 60mg. I will receive another 60mg dose tonight and again in the morning. The pulmonary team will see me tomorrow morning (after my 8th dose of 60mg). We will discuss how I’m feeling and go from there. They did tell me I’m pretty much driving the bus in terms of how we proceed. I do still feel tight and wheezy with a slight improvement. They can still hear that I’m tight need wheezy when they listen to me as well. With that said, there is a slight improvement, just not enough to change up the steroid dose just yet.

    I have NOT been using any oxygen since yesterday afternoon! I’ve sating really well on room air. I’ve been averaging around 95%, give or take. That’s an improvement and a win! I’ll take all the little victories I can get!

    I have not been able to do any airway clearance as far as the vest goes because of this very stubborn pulled muscle. It is slightly better but it’s been popping/rubbing quite often. Why you ask? Good question. Haha. They did a repeat chest X-ray early this morning, by early I mean at 3am at the bedside. Yeah, life is lock up is super exciting. Anywho, the repeat X-ray didn’t show any new rib fractures, full fractures or hairline fractures. So this popping/rubbing is just a random intercostal muscle strain, which is a muscle in the area between the ribs. Not my first rodeo with these type of things. Just keep going.

    That’s basically how things are going as of right now. Oh, IV Zosyn is going as expected, nothing to note there.

    I did go back in my blog posts to see what flu virus it was that I cultured when I had to come in on Christmas Eve of 2022 (yes, that long ago, yet another great reason for keeping this blog. haha). I remembered it was a random flu, I just couldn’t remember which one. Well it turns out it was the same culprit of parainfluenza at that time. That was a rough road to recovery from that one as well. We’re heading in the right direction though!

    So to answer everyone’s question…are you feeling better? I am definitely feeling much better than I was. However, with as hard of a hit that my lungs took with the parainfluenza wreaking havoc in my lungs and the really bad asthma attack, it’s going to take a much longer time to bounce back from this one. Just know, I’m pushing my hardest to get better as fast as I can but I can’t rush perfection. Haha. I’m doing all that I can do.

    Until next time…