CF Happens

This update is going to end be a longer one so that I can include more details to help explain things better. I know I’m “long winded” in my posts, not that I have any extra air to give but I give it to you, to help you. haha. I try to answer any questions you may have when I make my posts so that you’re left understanding things better.

The pulmonary fellow (one of the inpatient pulmonary doctors, not my CF doctor) came in this morning to see me. I told him I’m still struggling to move air well and I’m still very tight and wheezy. I had the RT (respiratory therapist) up my oxygen back up to 3L which I was initially on in the ER. I was lowered to 2L but the oxygen saturation monitor was beeping at me often for going below 89 this morning. I’m hanging around 95-96 now on 3L so I’ll stay here for a bit.

I told the fellow that it’s going to take me quite a few days with the high doses of IV solumedrol (steroid) to give me any relief. He asked me if this how it usually is. I told him I’ve never had an asthma attack this bad that took me to the ER. With that said, this time it’s going to take me even longer with higher doses of IV steroids to open my lungs back up.

I told him I know it’s not ideal but it’s what needs done. He kept saying, “ yeah you’re on pretty high doses of steroids at 60mg twice a day.” I said, “yes, I know it’s a lot but if we go down to soon, I’m going to end up right back where I was yesterday and I’d rather not have a redo of yesterday if I can help it.”

He kinda begrudgingly agreed with what I was saying whether he wanted to or not. Haha. Mind you, he doesn’t have the final say. He’s under the attending inpatient pulmonary doctor who has the final say on the inpatient side of things. They obviously listen to my CF doctor and what he wants because they know he knows me, my CF and what I need. My CF doctor was able to make all the necessary phone calls to the ER and to the attending inpatient pulmonary doctor so they were ready for me with somewhat of a plan in place, even though he hadn’t put eyes on me, he just knew I was on my way and what was going on.

The attending pulmonary came to see me this afternoon. She listened to me and said she can hear how little air I’m moving in the grand scheme of things and that I’m still tight and wheezy. She did say there’s obviously a big difference from yesterday when I initially got to the ER and my air intake/movement was very limited.

She agreed with me with what I believed is the right plan as far as the high dose solumedrol until further notice. The plan is for me to stay on the 60mg solumedrol twice a day and check in every day to see what improvement there is if any and go from there.

I told her I’m NOT rushing to get out of here like I usually am. I know if I rush it and we go down too soon on the steroids and move to the oral prednisone too fast, I’ll end up right back where I started. I don’t want that. I know I’m where I need to be, no matter how much it sucks.

She said with the parainfluenza on board causing a lot of issues, it’s going to take me weeks (the extended version) to get back to semi “normal” (whatever my normal looks like now). Most likely it’s the parainfluenza that hit me with only 3 days left of my last round of IV antibiotics a few weeks ago considering that’s when my major shortness of breath really started. The home flu test I took wouldn’t have show this flu anyway. Basically, the ER was the place to get the real testing done. Looks like I found that one out the not fun way.

She said I could likely be here at least a week if not more depending on how I’m doing. I’m in for the long haul.

My CF doctor did brag on me to the attending, saying that I’m one of their favorite patients and that I’m very compliant. Duh! haha

As far as the IV antibiotics go, I’m continuing those as well because I do have a CF exacerbation going on at the time as all this fun parainfluenza stuff and asthma stuff. I will NEVER kill all the pseudomonas that lives in my lungs because it’s everywhere in there and is always growing and multiplying. The goal with antibiotics is to try and knock it down a few notches so that it’s not one of the major things wreaking havoc at any given time. We really only treat when I’m having symptoms of an exacerbation/flare up to put it in check. I think that about sums things up. I will update when there’s actually stuff worth updating about.

Until next time…