Cystic Fibrosis on Scishow

Nathaniel is doing well. Weight is almost at 140lbs, appetite is good, no major issues and a few minor things we’re keeping an eye on.

The process of care is still keeping us on our toes but it’s closer to the “normal” battles of getting drugs filled or handling unexpected rescheduled appointments than it is anything else.

SciShow, a YouTube-based science show (I bet you guessed that) aired an episode on cystic fibrosis literally yesterday. It describes CF, the meds that changed Nathaniel’s life back in 2019, and what’s still being done to improve and extend the lives of people with CF (pwcf).  It’s worth watching even if you have CF.

One fun fact from the video: before Trikafta and for people who can’t take it, most people with CF still rarely survive their 40s. Nathaniel turns 50 in September, so he’s still pulling the median age of death forward.

Also, if you’re a younger pwcf even if you can’t use Trikafta, FUND YOUR RETIREMENT PLAN. It can still be used during the worst months of your lives to pay your bills. Ask me how I know!