07/30/2025
Update, because it's been a little bit.
Most recent CF clinic visit was great. His FEV1 (lung function main number) was 89% which is the highest it's been since he started on Trikafta, the original modulator that he was on. He continues to culture nothing but normal staph on his sputum cultures.
His metabolic panel has been close to perfect. This is something that has to be monitored regularly when one is on a modulator. The Alyftrek does not seem to be affecting his liver, is what this means. Yay. Alyftrek is also continuing to keep him in great health. It's been better than Trikafta with his gastro stuff, which makes it even better than Trikafta.
Yesterday he had an upper endoscopy, which he needs to have regularly because CF liver disease can cause esophageal varices (varicose veins in the esophagus). Happy to report that the varices he had almost 3 years ago have not grown and are, in fact, maybe even better. Woot!
Last week we also did his yearly echocardiogram and cardiology visit. His aneurysm remains the same. He will keep taking carvedilol, which is helpful at keeping the aneurysm small by regulating his blood pressure, and also helpful with the portal (liver main vein) hypertension.
What's next? Just keep on keepin' on. Usually this means fighting with the pharmacy (Walgreens Specialty), which is terrrrible.
