Hacker News Reader

Comment by stupidcar | Hacker News Reader

While I can understand the disquiet about loading patients onto this device when it's a bridge to nowhere, in terms of treatment and recovery, wouldn't it better to look at this in a more positive way: As providing the necessary (and astonishing, technologically speaking) first step in being able to treat previously untreatable conditions.

I'll bet that over time the technology will improve and require less intensive management, and for every patient who ends up in an unpleasant twilight between life and death, there's going to be one whose short-term survival inspires doctors to find a way to get them off ECMO. Long-term survival and recovery rates will improve as the years and decades go by, and eventually technology like this will be a regular and uncontroversial part of medicine. Doctors will look back on these early days like we look back on early surgery: as the hardest part of a learning curve that eventually pays off handsomely.

View on HN

As a dialysis patient, I've read a lot about the technology and its history. Seeing the big bulky machines of the 70s that made people bedridden and prone to infections in a matter of weeks. With the advances of sealed disposable plastics it is possible to do dialysis at home. Recently they allow solo dialysis if the patient is comfortable. I happen to do PD dialysis every night when I sleep. During the day people don't notice anything different about me.

While it's clear ECMO is useful and sometimes lifesaving, I feel its constraints are underappreciated by the layman. Being on pump in itself is a major inflammatory trigger and is really, really not a walk in the park.

ECMO is one of my most dreaded things to be put on. The other being marrow transplant. I've seen things in ECMO that have nothing to envy to the goriest of B movies.

That said, it's true that things are improving. ECMO results are nowhere nearly as bad as they were just 10 years ago around here. Or so it seems to me, at least.

The other being marrow transplant?

What is up with that? - I don't know the problems around it.

Marrow transplant is absolutely barbaric. Truly terrible. My daughter did it and I don’t feel like describing her discomfort but I’m sure there are some detailed stories that can be found elsewhere on the internet.

Was she a donor or a receiver?

I've only ever heard from donors about how uncomfortable the donation process is.

Even donation isn't particularly pleasant. From the documentation on my donor registry. "This is an inpatient procedure that will have a recovery period which will involve pain and discomfort." "Once the process has been started, can I change my mind? While legally you have the ability to withdraw consent at any point, as the recipient's immune system is extremely compromised and their own marrow is eradicated, you can be considered to have a moral obligation, as at that point, without your donation, the recipient will almost certainly die".

There are important distinctions between autologous (getting your Jen marrow back after ablation) and allogeneic (someone else’s cells) transplants.

The harvesting technique is now done using drugs like neupogen to mobilize the marrow stem cells into the blood stream where they can be collected in a process like dialysis. This is instead of having to actually extract marrow from the donor, which truly was barbaric, but I’m not sure if that’s done anymore.

The transplant process requires ablation (destroying the recipients existing cells) which I think can be done with chemo or radiation. It’s ~ a month in isolation to recover and the side effects of the ablation are also no fun but I’m not sure about “most dreaded”? There are probably some variations of the procedure which are much more difficult than others.

Graft-versus-host disease. I just want to mention most transplants aren't like below.

But imagine living your life in a small isolation room for weeks at a time. With infection over infection, bleeding out from every hole, and with good-intentioned people sticking needles into you all day long. Then you die alone in the ICU.

We used to joke that it'd be softer to die from the primary cause than from the treatment.

The cost is incredibly high and, if it becomes a bridge to nowhere, that incredibly high cost is paying for a terrible quality of life that will only get worse.

One of the patients in the story was a 17 year old with cystic fibrosis. Iirc, CF accounts for a third of all adult lung transplants in the US and half of all pediatric lung transplants in the US.

One drug for CF costs $250k to $300k annually. Patients who get a transplant go through around a million dollars worth of medical care in the year of the transplant. Following transplant, they have to add antirejection meds to their typically long list of other drugs.

Some years ago, some estimates put the treatment for CF at $100k to $250k annually. Some members of CF discussion groups would then wonder out loud "Where did they get these figures? They sound crazy low."

At the time, life expectancy for CF was 36 years old.

Around that time, one mom said "My child with CF just turned 18. When they were born, life expectancy for CF was 18. Now, it's 36."

People who get transplants can also go into rejection, which sound like a pretty gruesome death from what I have read.

The ethics of who get these kinds of treatments is really complicated. It does everyone a disservice to view it through rose tinted glasses. It's just not that simple.

Following your logic, why not just to euthanise CF patients?

India makes those $300000 drugs for a few dollars a pack.

There is nothing wrong with invasive medical procedures. At one point C-sections were "an extreme medical intervention against the will of god" and just any medication was "prolonging ones suffering"

If you can keep a man alive indefinitely with that, do so.

Such grim attitudes of people in US keep reminding me that USA was of few places in the world on boat with eugenics and fascism before the WW2

Following your logic, why not just to euthanise CF patients?

FYI: I and my oldest son both have a diagnosis of atypical CF. So you are flippantly suggesting I be murdered for being knowledgeable about my own diagnosis.

Suffice it to say that isn't remotely the point I was trying to make. I just get tired of the ridiculous drama when I try to talk about improving my diet, changing my lifestyle and getting off all the maintenance drugs. No one is at all interested in hearing about such an approach, presumably in part because there are no fortunes to be made off of it.

From a layman’s perspective, what I often hear ECMO being used for is to allow the heart/lungs recover for a while from the sheer trauma of a heart attack or surgery while not bearing any critical load.

Correct.

I'm told it's also used in cases of very severe asthma.

> Wouldn't it better to look at this in a more positive way: As providing the necessary (and astonishing, technologically speaking) first step in being able to treat previously untreatable conditions.

There's that, but in the mean time (especially at US cost levels), the additional marginal cost added to the health care system is likely to kill a number of other people with eminently TREATABLE conditions, e.g. because they need to gamble with their insulin supplies for cost reasons.

How the technology is viewed isn't the question, the question is how to most ethically administer this technology at the moment, with the medical interventions that are possible/reasonable.

Reply on news.ycombinator.com