Losing to a dog at 17D chess

in 2019 the FDA approved a drug called trikafta (which is really three drugs in one) for cystic fibrosis treatment. what it essentially does is patch up the malfunctioning proteins that cause the extra sticky mucus. trikafta is effective on about 90% of cystic fibrosis patients.

people who had spent their entire lives in and out of hospitals, on and off of ventilators, suffering from pneumonia and sometimes treated through painful procedures like intubation took this drug, got out of bed, coughed up an entire lifetimes worth of mucus out of their lungs over the course of a few hours, breathed clearly for perhaps the first time in their lives, and now go on to live well into their seventies.

My ward is the respiratory ward - CF is one of the things we specialize in.

Since this med came out we haven't had a SINGLE CF admission to the ward

There used to always be a CF patient spending a couple of months with us at a time

There's a man who is 23 years old who I was sure would not survive his next admission (aim saturations 85% is end stage lung disease)

There's a set of the local frequent flyers that we all know so well

Except

No we don't

On the CF specialist ward (with reasonable staff turnover)

Half the staff have probably never even seen a CF patient

Additionally, it should be noted that metrics like life expectancy are in no way a guarantee of... Anything. There are significant outlier CF patients who are at an advanced age now despite the odds due to a variety of different factors, having lived the majority of their lives before the development of modulators.

These medicines are incredible. My lung function's now basically at healthy-person-without-CF levels, and so's my sweat chloride. I still take pancreatic enzyme supplements, and I still do my respiratory treatments for maintenance reasons, but my overall health is still SO MUCH BETTER NOW. My weight is stable, I don't get anywhere near as many sinus infections, my migraines don't last as long.

Another incredibly cool thing is that they're seeing recovery from lung damage in kids who are on Trikafta and other CFTR modulators - and slight recovery in adults too. My own chest X-rays show that my bronchiectasis has gotten just a little better.

I was born in 1981, and it's wild to see how much the treatments and prognoses for CF patients have improved. Adult CF clinics are a thing now. More and more of us are living longer.

"The hat is customizable," he said, struggling with the velcro patch on the front. "If I need it, I have an ICE one too. I pick based off the business i walk into."

"Customizable is an important hat descriptor," I said. "what can I get you?"

"You wouldn't believe how offended people get these days," he said. "And I'm supposed to do something about it if you're offended? You chose to be offended!"

"We all have hundreds of thousands of decisions everyday," I said. I thickened my accent. "That's what my stepdad always said. But I can make one easier - we have a delicious Ethiopian roast available."

"Like if I told you you have a bull ring," he said, "because bulls have rings in their noses. Is that offensive?"

I laughed. "I've heard that before."

"It's a joke, but people get offended. Maybe you're offended."

I looked at him. I smiled. "You aren't trying to offend me though, right?"

Of course he was. I was being friendly and the friendlier I was, the faster he switched topics. He was saying anything inflammatory he could think of to see if I'd take the bait. After about 20 minutes of my redirecting and deescalating, he settled into a more normal interaction. He took up too much of my time showing me a product I'd feigned mild interest in to get him to stop talking about getting accused of inappropriate behavior at work. When we finally disengaged, he spent 10 minutes trying to catch my eye again. When he failed, he left.

There's this new breed of customer who insists on trying to incite political conversation through their clothing and, when that doesnt work, their snide little comments. If I owned my own business, maybe I would have given the guy the fight he wanted. But I work for a corporation and I love paying my bills so I deescalated.

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Other useful AI Removal/Detection links

How to spot AI Hallucinations like a Reference Librarian (originally on Substack)

The FDA has upgraded an egg recall issued last month to “Class I,” its highest risk level, as it warns the public that consuming the products could cause “serious adverse health consequences or death.”

The recall of 1,589,577 dozen white-shell eggs and brown cage-free shell eggs was initially issued by Midwest Poultry Services in late July, which warned they might be contaminated with Salmonella Enteritidis.

According to the company, the eggs were produced and distributed from farms in Texas between June 6 and July 3 and have sell-by or best-by dates between July 20 and August 17. The recalled egg cartons have either the code P-1950 or 0840962 and Julian Dates between 157-184.