Comment by DoreenMichele | Hacker News Reader

Comment by DoreenMichele | Hacker News Reader

Parent Full thread

This story has been here before. There are better articles out there that tell the story with more detail and nuance.

The short version is "Don't attribute to malice what can readily be explained by stupidity."

This is not all that different from organ transplants which also garner a lot of headlines, can end in the organ being rejected and the recipient dying slowly because of it and even if successful will require lifelong antirejection drugs. And yet when I suggest we might try harder to help people keep their own organs more functional in that case, I'm generally given all kinds of flak.

I think this is the same thing: people coming up with solutions for failing organs that will grab headlines and "LA LA LA Not Listening!!!" about details like "Yeah, but what if it breaks at some point?"

It happens because a very large number of people are happy to be cheerleaders for "Ooh, shiny!" solutions and don't want to hear that there could be quieter, saner solutions available if only we tried harder to look for and implement those. It takes a long list of people cooperating to make something like this happen. It doesn't happen because of just one lone person pushing for it.

By the time it's a negative headline on HN, it's too late for so-called common sense to prevail, unfortunately.

I understand that this comment comes from personal experience, and I appreciate the value of that viewpoint and experience. As a liver transplant recipient and a liver disease researcher, I have to add that the severe disease that puts people on the edge of transplant (or life altering implant, in this case) is not easily generalizable.

There was no saving my liver, which failed because of Hepatitis C due to tainted blood product. I lived day to day before transplant worried that I might bleed out, one of the horrible ways liver disease can kill you or knock you down. At the same time, I read liver support groups where people discussed many different "liver health" techniques, some sensible and some not. Some gave benefit to the sick, some gave hope to the hopeless, and some provided dangerous diversions to people whose only real hope was to get evaluated for transplant and accepted on a waiting list.

After dealing with the trauma of severe disease and the sick life-and-death game of organ allocation, one of the hardest mental changes I had to make post-transplant was realizing that those days were done. I might face other health challenges, but they would be different ones. The story here is different: people being plunged back into darkness not because their devices failed, but because of tech startup level problems. It's pretty cruel, almost dystopic.

>And yet when I suggest we might try harder to help people keep their own organs more functional in that case, I'm generally given all kinds of flak

Brilliant! Why did nobody think of that /s

Major organ transplants are pretty much only performed on people for whom it is the last resort. In fact, there are not enough organs to do transplants on everybody who would need it, let alone waste on people who don't.

I'm abundantly familiar with this. Seriously.

And, no, we don't try hard enough. There is lots of room for improvement.

> There is lots of room for improvement. Like what?

I feel for the majority of transplant cases the answer is going to be along the lines of "you shouldn't have gotten (into an accident|leukemia)" which is technically true yet at the same time very unhelpful.

> And yet when I suggest we might try harder to help people keep their own organs more functional in that case, I'm generally given all kinds of flak.

I don't think that deserve any flak. That is a very sensible approach.

It is so sensible that it is basically the minimum acceptable standard of care. Can you show us any story where any doctor did otherwise?

I have a form of cystic fibrosis. Last I checked, the condition accounts for a third of all adult lung transplants in the US and half of all pediatric lung transplants in the US.

I was diagnosed late in life with a relatively mild form of it. "The normal progression of CF" is a standard phrase in the CF community and its purpose is to tell patients to quit their bitching and accept that their steadily declining health is a NORMAL for people stupid enough to be born with this genetic disorder.

Having been diagnosed late in life, etc etc, I found my diagnosis very empowering and began getting better. My doctor expressed zero curiosity about how that was helping and simply scheduled me fewer appointments because "he had patients that actually needed him."

I used to have a hole in my left lung. I don't anymore.

I used to be a lot more open about my medical situation on HN under my previous handle of Mz. I've toned it down a lot because I get so much utter and complete bullshit from people who absolutely refuse to believe that I could possibly know anything medically significant.

I've had a really fucking bad day. I'm sick to death of a long list of things. I don't plan to continue to argue this on HN.

I'm right. I know I'm right. I know there are people who know I am not making this shit up.

But I'm likely to die on the fucking streets because the entire world is hellbent on believing "A former homemaker cannot possibly know fuck all that's medically useful, and we do NOT care that her life depended on it. LA LA LA NOT LISTENING."

Goodnight HN.

Sufficiently bad stupidity is indistinguishable from malice.

Reply on news.ycombinator.com