The year I didn't survive

I can relate. I am a stubborn person, but I also have childhood trauma that sank its way deep into me. I had a gigantic fear of relaying any negative information to my family because they would often turn it back against me regardless of whether I was at fault or not. So I just didn't respond, even when things were pretty bad.

About a month ago, I checked myself into a local hospital. I had severe ascites. My CO2 levels were 70%. My heart ejection fraction was 20%. I could barely walk much less breathe. I weighed 340 pounds. I had severe edema to the point that not only could I not put on socks, but flip flops barely fit on my feet. I could sit, tilt backward, and the edema in my back would act as a kickstand. Drinking a cup of coffee or eating anything more than half a burger would put me into a bout of physical pain that would last 2+ hours, and the only way to get past it was to lay down.

The hospital staff did paracentesis on me. They extracted 6, 10, 17, and 4 liters from me via a tube shoved into my abdomen. They put me on an around the clock Lasix drip and put a catheter in me. I urinated 2 gallons a day for 2 weeks. I entertained myself by watching the tube running from my junk to the catheter drainage bag, watching as I would periodically have bloody urine because I was passing kidney stones with so much force that they didn't have time to hurt due to the sheer amount of fluid coming off of me. After those 2 weeks, I weighed 215 pounds. My heart's ejection fraction improved to 50%.

Turns out my right lung did not have a connection to my right artery. And I have an unknown mass in my right kidney that they suspect is cancer. I had basically been operating my entire life with half an oxygen supply. As a teen, I had big time CFB athletic talent but didn't have the stamina and it was frustrating. And now I knew why. My right heart had started to weaken. They did ultrasounds and CT scans and angiographs. The cardiologist said that my heart had no signs of damage and my arteries were completely fine, so at least I had that going for me.

So after not having seen a doctor since 1992, I was stuck in a hospital for a month getting around the clock medication and daily blood work and weekly paracentesis (which will be happening forever). All my blood work is normal. I also have AFib, which is the main thing they need to treat and might even help to fix some of the backflow which causes my abdomen to fill with fluid. My blood pressure is normal for the first time since I was 6 years old. When I entered the hospital, it was 187/114. Now it's 105/80.

So in the course of a month, I went from having no doctor and no time in a hospital to a month long hospital stay accompanied with short term disability and a prognosis of needing weekly drainings forever along with 4 specialists and a primary care physician and about 8 prescriptions. I also saw a psychiatrist for the first time ever after having struck out multiple times with Betterhealth goons who wouldn't listen and kept trying to make me meditate.

I am a fundamentally different person than I was when I went in. I refuse to be that person ever again. I will prioritize my own needs over other people's feelings. I will be active because I want to be. I've got a plan to take my life back from the depression that hung over it for years. I have 3 or 4 product ideas that would make a hospital stay better and make the staff's lives easier without dealing with HIPAA. So yes, it sucked, yes, it was expensive, but it helped me gain perspective and while I wish I wasn't sick, otherwise it was totally worth it.

This vividly remembers me of "The Year of Magical Thinking" [1] It hit hard, and I didn't finish the book.

[1]: https://en.wikipedia.org/wiki/The_Year_of_Magical_Thinking

What you describe is how I've always thought about the phrase memento mori.

I’m so sorry for your loss. Something did change, and i think it’s good you feel that. Someone I used to work with, their wife was a professor at Rochester university and her research was around happiness. She would tell me that our baseline happiness in life is virtually constant (on large timescales, we all have good/bad days etc), there’s not much we can do to alter it in adulthood to shift it. There were a few exceptions, loss of a child, partner or critical illness.

I’m not sure what comes next but really hope that energy and happiness finds its way back to you with time.

> You only listed peer government grant agencies — which people believe have similar problems to NIH.

No. I also gave two other options.

Get the overhead rate of corporations from government contracts.

Or get the overhead rate that corporations pay to universities, just like the government.

> And the same people generally believe that’s also full of fraud and waste. So what’s your argument?

So then compare overhead rates in commercial contracts between corporations.

> So why don’t you do that, to prove them wrong? It sounds really easy.

Oh yes. I will send NIH, Musk, and Trump a letter, they will realize the error of their ways and change course. Come on. Now you aren't discussing things in good faith.

Although for the record major universities, including mine, have already written such letters to the administration. Much good that did.

All of these numbers are publicly available. Feel free to look them up. It's bread and butter economics.

But no. This isn't about proving anyone wrong. These people don't care about right or wrong. We are so past that. This is about their attempt to break the system. The fallout of which will be disastrous.

The impact of the wholesale dismantlement of our research capacity won't be seen by the average person for a while. Maybe a good 10 to 20 years. Then slowly you'll notice that all of the new companies, medicines, etc. have a different language on them, their names sound a bit foreign, that foreign stock markets are getting attractive, and that someone else is getting rich instead of us.

Restarting research will be nearly impossible. Europe has been trying to restart its research enterprise for more than half a century and the US still dominates despite massive EU investment. The biggest winner will be China who is paying a lot to attract researchers.