Pretend this is a donkey, then Fatboy.
We’ve all done it at one point or another in our lives, usually in college or right when we move out of the nest: stop taking one or more meds. It does seem pretty ridiculous to be on so many things at times, and you feel fine taking everything, so what’s going to happen if you stop one? Just one. Well, I’d be glad to tell you what happens so you don’t have to be a bonehead like Fatboy. I know I’m going to hear about this from my coordinator, but I can take it. I just want to be sure you don’t do the same thing or do the same thing with your kid with CF. Consider this a PSA.
A little over two weeks ago, I ran out of Pulmozyme and I was trying to get a 90-day supply in order to save on co-pays. After unsuccessful attempts at that and a coordinator vacation, I finally got my hands on a new order this week. So I admit it: I was non-compliant for 2 weeks because I was too lazy to call the pharmacy for a follow-up so they would call the doctor’s office to get the re-fill.
What happened in those two weeks with just one medicine not being in my arsenal? I feel more asthmatic. My cough increased, but it certainly isn’t a productive cough, so it’s not like I suffered with an infection or overgrowth of anything, but my quality of life did actually go down. Coughing more is a quality of life issue, even if it’s not a huge, life-threatening ordeal. Risking an ordeal if it had been another med that brought on an infection would be cause for a spousal butt-kicking, eh? Just 4 doses after getting my new shipment, I feel better and am back to coughing much less – and I got an, “I told you so! (insert emotion that translates into, “You big dummy!”)” when I discovered that my increased cough was directly related to the lack of Pulmozyme in my life.
Pulmozyme really is a wonder drug, but I don’t think I would recommend stopping any medicine on a whim at this point. If I am short on something, I call it in right away, like I did for Hyper-Sal yesterday. I had 7 vials left and made sure I won’t miss any doses of that, especially now that I know what “hypertonic” means in practical terms.
Would I suffer if I stopped taking my fish oil pills? Probably nothing – I don’t know, but now that I’m on it and everything seems to be working like a well-oiled machine, I’m not going to find out.
I agree with you wholeheartedly (wow, that's a long word). When I stop Pulmozyme my mucus gets way thicker and as soon as I start it back up again it gets watery and tastes different (I generally stop Pulmozyme after bouts of hemoptysis).
Yeah, it does taste differently, now that I think about it. But then again, I don't have much, if any mucus any more. 95% of my pulmonary issues now are inflammation with the rest of my CF issues being related to digestion and bloating. Other than that, I'm feeling like a champ going for 42% PFT in August.
I haven't had any hemoptysis since I went compliant in March. None. It's been amazing, given that my PFTs haven't increased to something ridiculous like 60%… yet.
I was convinced for years Pulmozyme did nothing, yet I was always compliant. This pas spring, I went to visit my brother/sis-in-law in Austin, TX. 2 of the vials accidentally got frozen! I thought, oh no big deal. 2 days without. Oh my gosh. I coughed so much and it was very obvious to everyone how much Pulmozyme actually did for me. My brother kept asking, “are you SURE Pulmozyme does nothing for you??!” as I hacked up both lungs. I'll never doubt that drug again.
That'll learn you! Hehe, just I like I got schooled with Pulmozyme. I guess it had been so long since it came out that I'd forgotten what a wonder drug it is.