CF Happens

I redid my lung functions on my home spirometer last Friday (the 21st). They were down again from when I did them on Monday (the 17th) before I started prednisone. Monday (the 17th) they were 27%. Friday (the 21st) they were down even more to 25%. My normal lung function is usually between 30-32%, which what we call my “baseline.”

I was hoping to be able to redo my lung functions again on Monday (the 24th) and send whichever numbers were better into my CF doctor, either Fridays numbers or Mondays numbers. The nurse practitioner asked me to redo my lung functions on either Friday or Monday and send them into the office so they could see how I’m progressing on the prednisone. Unfortunately, I was unable to do lung functions on Monday (the 24th) because I pulled another chest muscle on Saturday (the 22nd) from coughing so much. This is the second pulled chest muscle in 4 weeks.

I sent a message to my CF clinic/CF doctor on Monday (the 24th) to fill them in that I did my lung functions on Friday and they were down to 25% and that I was not able to redo them on Monday because of this pulled muscle, the pain would not allow me to redo them. That message to them won me a “sick appointment” on Thursday (the 27th) because I’m not getting any better and going the wrong direction in the lung function department, along with 2 pulled chest muscles in 4 weeks. haha

HERE’S A LITTLE RECAP (to make sure you’re up to date on all the craziness these asshole lungs have been up to): My body has been put through the wringer since my back surgery. My lungs always take a big hit each time I’m intubated and put under anesthesia. With my lung functions being as low as it is along with the amount of damage CF has already done to my lungs, it’s harder for me to recover from all of the stress all of that causes on my lungs and body all together. With that said, I recovered pretty well initially from being intubated and under anesthesia. I was able to finish my preventative IV antibiotics (5 days prior to surgery and 10 days following surgery) with no issues. Unfortunately, the freedom from IVs didn’t last. I ended up needing another round of IV antibiotics because I was dealing with an exacerbation a little over 3 weeks after finishing the preventative round of IVs.

With only 3-4 days left of the second round of IV antibiotics I got hit with a brutal virus that tried to take me out along with a really bad pulled chest muscle that I pulled mid cough. The pulled chest muscles like to spasm randomly and takes my breath away and I really don’t have any extra breaths to give. haha. I made it through that pulled muscle and it started felling better after about 10 days or so. Since I can’t take a break from coughing and breathing, my chest muscles never get a break. About 2.5 weeks after I healed (ish) from that pulled chest muscle, my asthma went haywire and I was very tight, wheezy and short of breath. That’s when I asked to start a high dose taper of prednisone to hopefully help open up my lungs. Then I pulled this new chest muscle from coughing so much and so hard yet again about a week after starting the prednisone. That brings me to my “sick appointment” in CF clinic.

Update from my “sick appointment”: First up was lung functions. I was able to push through the pain from the pulled muscle and do 2 tests. The machine decided it was done for the day and wouldn’t work for a 3rd try. I’m not mad. haha. My first try was 26% and my second try was FEV1 28%/0.70L. Yes, it’s still down but not down anymore than it was so I’ll take it.

The treatment plan is the following: We are changing up the IV antibiotic that we’ve been using as my go which has been Cefepime. We are going with IV Zerbaxa (1.5g every 8 hours through the IV ball) for 14 days. I have taken Zerbaxa before and tolerated it well. It takes about an hour to infuse. Yes, it’s a longer infusion. Of course, it’s no fun that it’s every 8 hours and takes an hour but being home doing IVs is so much better than being in the hospital doing them. I rarely go inpatient if all I’m needing is IV antibiotics for the simple fact that being in the hospital opens me up to ALL of those germs that live in the hospital. I don’t need any extra things to add to my already complicated body. haha. She is also extending my prednisone taper. I’ll finish the 40mg that was already prescribed but I’ll go down to 30mg for 5 days then to 20mg for 5 days then 10mg for 5 days. I was set to go down to 20mg for 5 days after 40mg then done. I should get the Zerbaxa tomorrow. It’s an expensive medicine, so it’s not one that they keep in stock.

Here’s a little about Zerbaxa since many haven’t heard of it: Zerbaxa is a combo antibiotic. It has both ceftolozane (in the cephalosporin family) and tazobactam (in the penicillin family and is a beta-lactamase inhibitor). It was first approved for use in the US by the FDA mid December of 2014, so rather new in the world of antibiotics. We need NEW antibiotics developed. I’m limited on what I can take because of my drug allergies and what my pseudomonas is sensitive to in comparison to what I can actually take.

Thank you for joining my educational Ted Talk today. haha

Until next time…