CF Happens

My lungs have been more tight and wheezy for about a week and a half or so. The tightness and wheezing got worse while we were in Nashville the first weekend of August. I sent a message to my CF doctor through the patient portal last Friday at 9pm to ask for Xopenex (another type of Albuterol) and possibly a prednisone taper to hopefully get some relief. I was hoping that some person from the CF clinic had nothing better to do than check the patient portal on a weekend.

I had also messaged one of my RTs from clinic (now retired haha) on Facebook asking if they thought Xopenex would open me up better because DuoNeb was not giving me any relief. They gave me their thoughts. They checked in with me the next afternoon to see how my breathing was. Of course, no change, still tight and wheezy. They asked if I had a response from the portal yet. Nope, not yet. About an hour later they messaged me saying that my doctor would be calling in some prednisone for me. It pays to know someone in healthcare on the weekends. haha. I never expected them to do that for me but I’m kind of a special patient and all. haha. The office gal messaged me on Tuesday to see how I was doing. What do you know, no better. Hence, the “sick” visit today.

My lung functions were steady at .86L/31% (FEV1). We agreed that this is all my crappy asthma being a butthead. We decided to up my prednisone to 60mg for 5 days (started at 40mg with the original Rx), 40mg for 5 days, 20mg for 5 days and then 10mg for 5 days. He also called in the Xopenex to see if it will open me up better. Most people that opt for Xopenex is because Albuterol makes their heart race because it activates beta-2 receptors in the body which dilate the arteries to increase blood flow. Xopenex typically doesn’t have the same side effect for most people.

We also discussed what the long term solution is to my bad asthma flareups because long term use of prednisone is a no go. There are too many side effects/follow on issues when you take prednisone long term. Plus prednisone doesn’t work that great for me like it used to anyway. We decided to try another asthma infection. I received my first dose of Fasenra in the office today. I will continue the injections at home like I did with Dupixent (which didn’t work for me). I will do one dose every 4 weeks for 3 doses and then every 8 weeks to follow. We’re hoping that we can find something that will help relieve the inflammation and open me up so I’m not so tight and wheezy. My doctor knows that my body does NOT play by the rules or go by the books. What should work, might not work and what shouldn’t work, in theory, might actually work. You just never know with me. I remind him that I make him really use that degree of his. Not to mention the connections he has with other specialities coming in clutch in a time of need. haha.

I go back in 5 weeks to check in. Fingers crossed that I get some relief because the whole laying in bed and hearing myself wheeze over the loud fan is quite annoying. Not to mention, the rattle from the wheeze and the tightness. Very inconvenient. haha.

Until next time…