I have the same mutations, Delta f508 and r117h, with the 7T variant, and I'm taking Kalydeco. There are 3 variants of r117h, and usually there will be a 2nd genetic test done to determine which one you have. 5T is the worst, 7T is in the middle, and 9T is the lightest of the 3 variants. Generally, all 3 of these are milder versions of cystic fibrosis mutations, and most people with Delta f508 / r117h are pancreatic sufficient. Having mild CF issues isn't always mild; it can turn into full-blown CF at any time, and just means that the real problems may show up later as you age. The fact that you've had pancreatitis a few times is a concern, as most mild cases don't have bad digestive issues. Plus, people with the milder mutations almost always have CRMS, CTFR-related metabolic syndrome, without ever going through the full diagnosis of CF. My sweat test levels never got above 29 (not even borderline CF), but I still ended up getting a lung infection with MAC/MAI 5 years ago.
MAI or MAC is an atypical mycobacterium that's just about everywhere, and most people are immune to it, unless they are an immunocompromised host. The effects are just like tuberculosis and it's nearly impossible to get rid of. Since starting Kalydeco a year and a half ago, I'm not really coughing up anything anymore, and my sweat test levels are down to 13, which is totally normal. I feel so much better, especially knowing that a CF drug can get rid of an otherwise incurable mycobacterial infection. Just to clarify, MAI or MAC can be cleared, but it almost always returns to a good host, as it's prevalent in soil, wet places like your showerhead, and the environment. Thanks to the Kalydeco, the only amount that shows up in my sputum anymore is through a DNA probe, which means that the levels are really low.
I didn't start getting sick until I was 38, although I got my genetic diagnosis when I was 33 and pregnant through prenatal screening. I still checked in with the CF clinic annually, until they found the MAI in my sputum, and then they wanted to see me more often. I'm incredibly grateful that my condition was carefully watched until problems inevitably showed up, and I'm even more grateful that I was able to get help from Kalydeco without ever having had full-blown CF. Having partially functioning CTFR channels still causes problems, and the prevalence of MAI/MAC infections are seen more often in people with the mild mutations; the people with full-blown CF are more prone to pseudomonas. So, even if your sweat tests (which you'll eventually get) aren't at CF-diagnosis levels, you might still get more health issues as you age, but you can get help from Kalydeco. It's really effective for me. As for your pancreatitis, it should help with that too, as Kalydeco works throughout your body, although it won't improve damage that could have happened from any scarring from a previous pancreatic attack.
The only real downside is having to get such expensive medicine ($311k/yr). But try to get it ASAP, before Trump changes policies. If you live in a poor state that requires a 10% co-pay of specialty medicines, you'll be out of a lot of money getting it. I live in NY state, which has a maximum of only $60/month for co-pays on specialty medicines. Still, in a state with such good healthcare (the NY state health exchange will survive even Trump), it was difficult to get approved. Don't expect your insurer to give you an approval without you calling back and checking in on things multiple times. After a few months of jumping through hoops, they told me that I needed a complete eye exam first. And then, after that, I had to call and expedite things a bit more. It took at least 2 months, but it could take you even longer. As far as the price of this medicine is concerned, do not feel guilty about taking the medicine. The pricing issues are between the insurance, public policies, and the drug manufacturer, and you can express your opinions to them, but don't avoid taking the medicine as a way to protest. It really works for our particular mutations.
