CF Happens

Today I had my regular 3 month check up which happened to fall after I finished IVs. My nurse called me to ask if I wanted to change my 8am appointment to a Telehealth appointment instead of having to go in. I, of course, said sign me up!! At my clinic we go to the pulmonary lab 1 hour before our clinic appointment to do PFTs. That means that I have to check in to admitting before the pulmonary lab appointment. That would mean that I would have to get up around 5:45am to do a treatment, get ready and then drive 27 minutes to the hospital to check in. So basically that would suck. So yes, please sign me up for the Telehealth appointment! With that said, if I were feeling bad I would have gone in so he could listen to me and I could do the more accurate lung functions in the pulmonary lab. When I do a Telehealth appointment I use my home spirometer the day before my appointment and email my results in so my doctor can look them over before he sees me. Ok now onto the actual appointment update…

My lung functions were basically steady. My FEV1 was .85L/31%. When I finished IVs I did lung functions on my home spirometer and they were .89L/32%, so no real change. We did discuss what antibiotics would be my next choice for the next time I need IVs. Meaning which ones my sputum is sensitive to. Unfortunately, I don’t have many options with my drug allergies and with the few that I’m actually sensitive to. That’s not to say that I’m out of options because that’s not the case but we may have to be strategic with what we use and how we use them. Antibiotics just don’t work like they used to for me.

My cough is more of an asthma cough which means it tighter and has a high pitched wheeze. I’m not loosening up anything with my coughs. I’ve never been one that coughs much up anyway and that changed even more after I started Trikafta. My cough right now is more of an irritated cough, like my airways and lungs are irritated and inflamed. I’m not coughing a ton but when I do it isn’t productive and the cough doesn’t relieve any tightness and wheezing. My duoneb (albuterol & atrovent combo) treatments don’t always help to open me up that great. That’s asthma and CF combo crappy lungs for ya. My allergy asthma doctor that prescribed the Dupixent injections (every 2 weeks) for my asthma wants me to stay on it for a total of 6 months to make I give it a chance. I told her that I have seen no improvement at all. So at the end of July if I am still not seeing any improvements, I will stop taking it. There’s no reason to stay on it if it’s not doing anything. I take enough medicine so if I can eliminate one because it’s not working then I’m all for it.

That’s pretty much the update. My doctor is great about putting our brainstorming in his notes as far as what antibiotics to go for next time so that if he’s not available to see me the nurse practitioner will know what we want to do. He looks a few steps ahead not just in the right now which I appreciate. Everything else is steady. I’ll have another appointment in 3 months for another regular check up like usual.

Until next time…