CF Happens

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…