After my last post from March 9th, it’s been a bit of a circus in terms of these lungs of mine. On March 31st, I had a really bad asthma attack where I basically wasn’t moving any air and my oxygen saturation was very low (65% when I got to the ER). My husband rushed me to the ER. I was able to notify my CF doctor about what was going on and that I was on my way to the ER. He made the necessary calls to get a team ready for me when I got there. They were able to get me started on a continuous really high dose of inhaled albuterol as well as oxygen to get my sats up. I needed high doses of IV solumedrol steroids to help open my airways. I spent 8 days in the hospital getting high doses of IV steroids to get my lungs/airways open so that I was moving air again.

In the ER they did a nasal viral swab, as usual. I tested positive for parainfluenza. Weirdly enough, I tested positive for parainfluenza went I went to the ER on Christmas Eve (and was admitted) in 2023 as well. It was the reason for how bad my lungs were at that time as well…very tight lungs, struggling to breathe, not moving air well, low oxygen sats, etc. Parainfluenza is hard to get over for a healthy person which means it takes me out obviously. It was going to take me a long time to get over it.

I was on a very long oral prednisone taper when I was released from the hospital after 8 days because of how bad my lungs were hit. Also, I pulled 4 chest muscles over about a 5 week period from coughing so much and so hard. I’m pro at doing that apparently.

I had about a 2.5 week break of no prednisone and IV antibiotics before I was sick again and asking for both on the Memorial holiday weekend. My lungs have been very tight and wheezy. I’ve been getting short of breath very easy doing very little, so it was time to wave the white flag and ask for IV antibiotics and prednisone again. I am halfway through my IV course. I started the IVs on May 27th. I started the prednisone on May 24th. The prednisone taper is another very long taper. It is not an ideal thing to be on prednisone as often as I have been with all the side effects of possible bone density loss among other things. Unfortunately, with how bad my asthma is and how bad my CF scarring is which makes it hard for my lungs to fully expand, it may end up being a more frequent/permanent thing in my treatment plan but we will see how I do going forward.

Until next time…