Treatment for the mildly diseased

I've got my clinic visit coming up next week and am conflicted about starting Orkambi. I don't love the price (even though I won't bear the brunt of the price, I don't love making my self-insured employer pay), I'm nervous about possible side effects especially those involving the liver, and am little disappointed that it doesn't seem to be as effective as Kalydeco. My lung disease has been somewhat mild. I only do Tobi 2-3 months of the year usually during flare up in the winter, I've yet to be hospitalized for a pulmonary exacerbation, I cough and produce but it is rare for it to be any sort of disruptive. I'm still at the point that anyone that finds out I have CF is surprised (and I'm able to keep that group fairly small), outside of the time commitment for treatments I'm able participate in any activity I want, I even completed a 10k race last weekend at an 8:30 min/mile pace. I still have downs, I'm tired (was once told I nap at a level twice my age), I get depressed and stressed, I tend to catch many of the bugs going around and when caught they hit me fairly hard. But still, I'm just not sure if I'm ill enough to require/deserve/risk $250k in brand new treatment. Irrationally, a part of me is afraid. If I don't take Orkambi, then I have a few more weapons on the shelf when things start to go south. I'll protect myself from being disappointed in a sub-optimal treatment. In general, I've never been super cutting edge or overly aggressive in treating my disease, but I...
Source: Cystic Fibrosis Adults Forum - Category: Respiratory Medicine Authors: Tags: Adults Source Type: forums