Comment by mhalle | Hacker News Reader

Comment by mhalle | Hacker News Reader

The flip side to the liver's amazing duties in the body is the catastrophic impact on health when it fails. A failed liver takes out basically every body system.

When the liver can't break down bilirubin, you get jaundice and itch all over.

When the liver becomes cirrhotic, blood can't move through it, increasing pressure in the portal vein and precipitating life-threatening bleeds in the stomach and esophagus. For an extra bonus, clotting factors are manufactured in the liver, so these bleeds can be uncontrolled.

The spleen enlarges and gobbles up white blood cells, compromising immunity.

Ammonia and other yet not fully understood toxins that the liver can't filter cross the blood-brain barrier and cause hepatic encephalopathy, ranging from brain fog to coma.

Liver disease is also tied to hepatorenal syndrome (kidney failure) and hepatopulmonary syndrome (lung damage), both of which can be sudden and fatal.

Ascites (retention of fluid) also accompanies cirrhosis, often requiring paracentesis, which in turn is correlated with sepsis that the compromised immune system can't fight (also often fatal).

Low Vitamin D in cirrhotic patients leads to osteoporosis, including vertebral fractures.

Inability to process protein leads to muscle wasting and weight loss, reducing strength and immunity.

And finally, cirrhosis is correlated with an increased risk of liver cancer.

The cure for any of these conditions? Transplant, if you're lucky and the other systems aren't too badly damaged. Everything else is just holding on.

And to get a transplant? You have to be sick enough and sufficiently close to death that you're eligible, but strong enough to survive major surgery. No insurance in the US? They won't even assess you.

A liver transplant saved my life three years ago. I've lived this list of symptoms. My debt to the universe is to educate when possible, to console when necessary.

My ex-wife is still recovering from her second liver transplant. The first one was when she was 20, due to a genetic disease that causes sudden liver failure around that age. That time, she went from ER to transplant to recovery in just a few days, because of how quickly she became sick enough to move to the top of the list.

They never told her that liver transplants are pretty much always temporary, at least with the immuno-suppressant drugs that were available most of the past 20ish years. Even with drugs, most people's bodies are constantly attacking the foreign liver and damaging it beyond its ability to repair itself. 20 years is a pretty good run; hers lasted 22.

This time around, she was in the hospital for two months (seemed much longer) while they tried to keep her alive. She went through all the symptoms you mentioned. Towards the end she suffered full-on dementia from the toxins in her brain. After two months of suffering, she lost her will to live, and told me and her family that she was giving up. I was sure she'd be gone by the end of the week, but that night the miracle happened; a compatible liver was available and she was at the top of the list. The next day, after a very long surgery (working around 22 years of scar tissue from the first transplant) she got a healthy new liver.

She remained in the hospital two more months, mostly in rehab, while her brain returned to normal (mostly) and she learned to walk again. It took months after going home for her to be strong enough to fully care for herself.

Unfortunately, the decades of drugs and months of liver failure pushed her kidneys past their limit. She's not on dialysis yet, but most likely she will need a transplant before the year is up. It's just a matter of time, and she's trying to find a living donor. If she can find one, she can get the transplant before she gets too sick again, which will make recovery much easier.

Organ transplants are absolute miracles of modern medicine, but we need artificial organs. Whether they're completely mechanical, natural organs grown artificially, or custom gene-spliced organs to prevent rejection, we need them. There aren't enough organs available now to meet the need, and the patients who get them have to go through hell first. And the ones who don't, don't survive at all.

> we need artificial organs

Or a way to farm organs in the lab.

If self driving cars succeed in massively reducing accident deaths (yay!) an unintended consequence will be huge shortfalls in donatable organs.

All the more reason to make organ donation opt out or mandatory.

You know, at some point negative tradeoffs kick in when you try to go do far with this idea of "making everyone do the right and honorable thing, all the time." Such as, for example, the very, very negative implications of the idea that "society" (really, the government) outright owns your internal organs.

Let's stick to education and (why hasn't been tried?) financial incentives, please.

Explain why making organ donation after death an opt-out process would have any negative tradeoffs, let alone a net negative effect.

Someone who appear brain dead at first glance, their family might be pressured to turn off life support to take out the organs, to give to another person in the same hospital.

If that first glance was mistaken and the person was in a coma that could recover months from now, then basically a man was killed for his organs.

It is highly unlikely that the recipient is in the same hospital. The ER team who oversees the brain-dead person is not the same team who handles the organ transplantation. The docs who treat the patient with a failed liver aren't the people who decide where the organ(from the deceased donor) goes. This is a myth that needs to die. Doctors don't 'let someone die' because they are an organ donor. There's a complex system in place to regulate the distribution of organs.

edit: I am a liver transplant recipient.

Opt-out. Problem solved. If you are that worried about it, you can opt out. Most folks won't care.

This is a utilitarian-ish argument. I would consider the following questions:

- Who owns your organs before death?

- Who owns your organs after death?

- I assume you are opting-out from a government mechanism for organ donation. What is the origin of the government's power to claim your dead organs unless you opt-out?

1. You do

2. No one does

3. The origin for the claim is that you accept to give your organs, and it is that way by default in a lot of countries because most people either don't care or actively want to save lives. If you don't want to give them for whatever reason, you can always opt out

I would also like to point out that this whole point seems like debating for the pleasure of rhetoric : there is no specific downside to having organ donation opt out by default, as a lot of countries do, for example France since 76. And if you don't agree with organ donation, just opt out. There is, however, a huge upside : saving a lot of lives.

Actually the person above specifically suggested it could also be mandatory, as this were an equally palatable option.

So it was mostly that suggestion that I was responding to. As to the negative tradeoffs in that option -- I think they're pretty obvious.

(Hint: we'd have to in effect force members of certain religious to at least formally disavow that aspect of their religion, for one).

As to opt-out, while of course different, it's still in the same (troublesome) territory as the 'mandatory' option -- definitely a major insult to people with strong personal or religious convictions about the issue. At the end of the day, it's inseparable from the idea that your body is, on a certain level, state property.

Which, aside from being repugnant to many people, is also in conflict with the emerging social consensus that, by and large, one's dominion over one's physical body is absolute and inviolable† -- which just so happens to form the legal and philosophical bedrock behind the idea that one should be free to choose to terminate a pregnancy; as well as (in the case of terminal illness, at least), the manner and timing one's own death; and of course, the manner in which one's body is disposed;

The same should naturally hold for the disposition of one's organs after death. We would never think of passing a law making, say, chemical dissolution the default disposal method for your body after death, unless you "opt-out" and choose some other method -- even though this is touted to have many environmental benefits. Nor would we think to propose that, by default, your body be served up for whatever experimental purposes the local university might have in mind (unless you "opt-out", that is). It'd just be way to repugnant to many people, and open up too many cans of worms ethically and legally.

So the organ donation issue is basically right in the same territory.

† Aside from proscriptions against controlled substances, of course. But that's just one of the many schizophrenic negative tradeoffs of that particular policy.

But don't financial incentives lead to thieves stealing your organs?

Not if you structure them properly.

Where I live (Austria), it's opt-out already. I didn't find concrete numbers, but I read that Austria is therefore among the top transplant nations.

We may have a way to farm organs literally and soon.

https://www.technologyreview.com/s/603857/crispr-may-speed-p...

It was already ten years ago that some scientists figured out how to grow a 'mini liver' in a bioreactor. They've developed the technology a lot further since then, but it still looks to be 15-20 years out for full commercialization. The CRISPR solution may do wonders for people waiting desperately on organ lists in the meantime.

> My debt to the universe is to educate when possible, to console when necessary.

I don't have any liver related problems, or know/knew anyone with them, but I must thank you for having that sentiment.

I have a liver disease of unknown cause - doctors have investigated every cause under the sun for many years without success, and it looks like ill need a transplant at some point. Would you mind if i contact you with a few questions?

> No insurance in the US? They won't even assess you.

Do you have a source that goes into the reasoning behind this? I could guess, but I'd prefer to give the subject the respect it deserves.

Not OP, but I received a bone marrow transplant 6 months ago, and the amount billed to my insurance so far has exceed 2 million USD. So I assume no transplant team could survive without someone agreeing (in advance) to pay the bill for the transplant and post transplant related care. If I had walked in with a big enough wad of cash, it's possible I could have got on the list too, but my case has pretty much gone as smoothly as possible, with complication I could see the bill approaching a much bigger number,

If this makes thankful you have insurance, maybe the number is inflated. It's not unheard of for the net amount paid to be far less.

Any patient in the situation should be thankful for insurance. When your liver is failing, you have your hands full.

The only major variable you should try to optimize is wait list time. Outcomes are roughly comparable across centers and are monitored by the government.

From what I have read about transplants, I would not automatically assume the figure above is inflated. They seem to generally be quite expensive.

> Not OP, but I received a bone marrow transplant 6 months ago, and the amount billed to my insurance so far has exceed 2 million USD.

Transplants are expensive, but the amount billed to your insurance is not a meaningful number in any way. Hospitals don't actually expect insurers to pay that; they set the number absurdly high as a starting point for the back-and-forth negotiations. This is particularly true for very expensive procedures which are almost always paid for by private insurance - both because of the expense, but in some cases by law.

(On that note, even looking at the amount paid by your insurance is misleading as well, because if you're on private insurance, you're paying not just for your own care, but to cover the care of people who are on Medicare and Medicaid, since private insurers are required to cover the costs of those patients' care as well. This is especially true for high-end, expensive, and/or chronic or terminal treatments like dialysis.)

Liver transplants can cost $700K to $1M+. In the US, insurance (or Medicare) typically engages in a special negotiated contract with the hospital. This amount is too expensive for a hospital, or even many affluent individuals, to pay without insurance. (I'm sure there are exceptions for the exceedingly rich.)

For me, a magical additional insurance policy appeared in my hospital account to which all transplant-related expenses were charged.

In addition, to get an organ in the US you must pass a series of exams regarding your physical and mental health, diet, your ability to get post-transplant support, and your willingness and ability to take care of your new organ. Alcohol and drug tests as appropriate. And for these evaluations, money can only indirectly help you.

I would also guess that there is a correlation between those people who have insurance and those that can pass the transplant evaluation, though that's a hidden variable that the powers that be probably want to stay hidden.

Organs are just too scarce to waste on a person who will squander one. It's a life and death competition between patients. It's horrible to see the people who get left behind, who wait too long, get sidetracked by some "miracle" cure, or even happen to live in the wrong region of the country where organs are scarce.

But the true miracle of a successful transplant is almost unfathomable (and that's said by a rationalist). From death's bed to walking a couple kilometers in a month and a half.

> happen to live in the wrong region of the country where organs are scarce

Where should you move if you want an organ?

Do the research if your life depends on it, but New Orleans, Indianapolis, and Tennessee are good bets. Georgia and Florida too.

The reasons are morbidly fascinating and too detailed to go into here.

Sounds interesting. Could you give us a quick summary?

A combination of lots of people killing themselves(usually in auto accidents) plus many people who need a liver being ineligible to get one due to alcoholism/drug addiction/other health problems.

Varies by state because of details of organ donation laws, religious makeup, quality of healthcare. Blue states tend to have fewer donors (seat belt laws, gun laws, more social safety net). High concentration of hospitals is generally bad (car accident victim on the Mass Turnpike gets rushed to one of a number of world class hospitals, lives, not a donor). So Boston bad. New York worst state in US: need an organ in NYC? Relocate while you can.

Midwest and southern generosity typically drives higher donation rates. Neighboring states may draw organs from your state.

Transplant hospitals that do many cases get really good at it, and have enough experience that they will use organs other centers will reject. My liver was rejected by at least one other transplant center before it arrived in Indianapolis. (They let me see it before surgery. How cool is that?) So think twice before ruling out an organ just because someone else said no.

Blood type, physical size, and exact timing of things can cause lucky breaks.

Yeah, some places are better than others. When I was waiting for a transplant, I lived in the western United States. I shared an organ distribution region with California. My docs told me: "That sucking sound you hear is all the needed organs going to California." Ha! I waited 2.5 years for a transplant.

>Do you have a source that goes into the reasoning behind this?

A simple "no" would have sufficed.

That 1M "cost" you mentioned isn't actually the cost is it? It's the amount the hospital wants to recover from an insurer. The true dollar cost is much lower.

I'm not saying it's easy to get an organ transplant without insurance, but to say it's impossible without anything but speculation isn't very useful.

I was evaluated by two US transplant centers that function under a government-regulated evaluation regimen, and spent more than a year researching the process.

Neither would proceed with any paperwork or testing without proof of insurance coverage specifically for transplant.

Honestly, I'm not especially concerned with edge cases like "is it possible to get a transplant without insurance if I offer to pay cash?" or questions about what a transplant really costs.

Those are irrelevant academic questions for the vast majority of transplant patients.

Can you give some advice on how to keep my liver healthy?

Don't drink too much, exercise, eat a healthy diet, dont use unclean needles, insist a condom be worn during sex

My docs told me, while I was waiting for a transplant, that fatty liver is a problem. Even though a donor looks healthy, their liver can be too fatty for transplant. Eat right and exercise.

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