Sunday, April 8, 2018

Same Numbers... Different Appointment

So I'm behind on writing this post. I had my CF clinic appointment on Wednesday at Vanderbilt, and as is pretty usual for me, I have been feeling crummy with extra congestion and lots of coughing. Just like in January, my lung function was back down to 32%. The difference between the two appointments was that I was mentally prepared for this one. I knew my lung function was low, and I already had a game plan in mind to discuss with my doctor.

First things first, he asked me about antibiotics. After a brief discussion, I let him know that I would rather hold off on antibiotics if at all possible. I hate going on antibiotics because they always tear up my stomach and bring up more issues on top of what they are trying to fix. My doctor agreed to let me wait a little longer before going that route since everything else seemed to be going alright. My weight has been steady, my lungs sounded good, I've been working every day, working out 4 days a week, and playing kickball 2 nights a week.

I also brought up the fact that for a couple days before my appointment, I had started squeezing in a third breathing treatment during my plan time at work. I asked if we could tweak my prescription for hypertonic saline so that I could continue with the extra treatments and not run out of medicine too early. He seemed to be impressed with my plan and said that he would fix my prescription.

Finally, we discussed Symdeko. We talked about the fact that I haven't seen any real improvements from Orkambi and about what Symdeko has to offer for those that fit this category. We both decided that it would be a good opportunity for me to make the switch. The only obstacle would be getting my insurance to approve it since a lot of companies have been denying it for patients. The next morning, I got a call from the CF pharmacist letting me know that my insurance had already approved Symdeko for me! Luckily, they had a box in stock and would send it right away. I took my first dose Saturday morning. All good vibes, thoughts, prayers that it will be more effective for me than Orkambi are greatly appreciated. I will keep everybody posted on how things go.