No news is (mostly) good news!

It’s been quite a while since I shared a health update. This time around, no news is mostly good news!
 
Things have actually been relatively calm in recent months. I had a bronch and a sweat test in July, but aside from those and bloodwork every few weeks I’ve actually managed to avoid any other procedures. I haven’t even had any doctor’s appointments! Katherine and I have been taking advantage of the calm to go on outings and little day trips. We went out to a free concert and fireworks for the 4^th of July, visited the beautiful Chinese Lantern Festival, drove to Edison for a cat expo, road a scenic railroad in Delaware, went to Wildwood to check out a tattoo convention, and spent an afternoon at the art museum. We’ve had a pretty busy summer, and still have more outings planned! Definitely a nice change from medical drama!!
 
There is one big thing going on though: Trikafta. I started taking it over a month ago, and it hasn’t gone entirely smoothly. When I first tried it a couple years ago I ended up stopping because it seemed to be making me fatigued and depressed. This time we tried increasing the dose slowly to give me time to adjust, and while I did ok with the first dosage, as soon as I moved up to the next level I started struggling with fatigue and depression again. Right now I’m back to the lowest dose and planning to stay here for a while to really give my body time to adjust before trying to go up again. I don’t want to waste the rest of the good weather and spend the Jewish holiday season being exhausted and depressed, so I won’t be changing the dose until the end of October at the earliest. I do think I’m still having some side effects, such as insomnia and fatigue, which is difficult but definitely much more manageable than what I experienced at the higher dose. It’s really frustrating that there’s this amazing medicine that could nearly “cure” my remaining CF symptoms, but I may not be able to benefit from it due to side effects. I have heard though that for some people the side effects fade after a month or 2, so I’m hoping that eventually I’ll be able to sloooowly work my way up to a full dose. Here’s hoping!
 
This month will be a little more medical, as I have appointments coming up with my transplant team and my endocrinologist. I also have a dexa scan scheduled to check my bone density, since my bones have been compromised by years of steroids. But aside from that I plan to keep getting out and about and enjoying myself as much as I can!