The Devastating Allure of Medical Miracles

December 28, 2019 8:29 PM

After sepsis forced the amputation of Sheila Advento's hands, an intricate transplant technique made her whole again. Then came the side effects. CW: pictures and descriptions of various medical issues, including transplanted and amputated limbs
posted by Etrigan (8 comments total)

Thanks for posting this. From what I know of anti-rejection drugs and their effects, I have no doubt that prosethtic solutions will continue to be more preferable option until some sort of other immune system break through is made.
posted by EinAtlanta at 8:51 PM on December 28, 2019 [3 favorites]

It’s like watching the sausage being made for medical protocols. Sadly, the only way to improve is to try and to deal with the roadblocks as they come up.

I will say that the paragraphs on the informed consent were worrying. It’s one thing to be informed, understanding the potential risks and consequences is another thing completely. Sadly, humans are pretty bad at estimating and visualizing risk. If you emphasize risk, you could make people apprehensive about life altering procedures that could greatly increase the quality of their lives with minimal actual risk. If you don’t emphasize it, the risk will get lost in the noise. I don’t know what the right path forward should be.
posted by Your Childhood Pet Rock at 8:52 PM on December 28, 2019 [3 favorites]

This is why the push for uterus transplants, however deeply sympathetic the motives, seems insane to me. Exposing yourself to these drugs even for just a year or so merely so you can carry a fetus to term (when you could still be the bio parent of a child without a transplant) is just so risky.
posted by praemunire at 12:18 AM on December 29, 2019 [8 favorites]

Thanks for posting this. The informed consent/IRB protocol process looks pretty broken here, as is the after care. How are these patients going to even begin understanding a 27-page document full of medical jargon and CYA legalese?

Also, how does the medical team begin to understand the socioeconomic life worlds of the transplant recipients? There should have have been multiple attempts to support and contact and support these folks down the road, maybe visiting them where they live. But I guess the funding just covered the needs of the medical team.
posted by carter at 7:45 AM on December 29, 2019 [5 favorites]

It seems staggering to me that these folks are expected to be experimental subjects with an impossible consent protocol and then go and work regular jobs which in most of these cases in this context seems dangerous. The primary subject of the article Advento, seemed to feel that she couldn’t schedule all the appointments and keep her job...in a medical billing call center. If you can’t support the whole person in this groundbreaking field of study, you probably just shouldn’t.
posted by amanda at 8:21 AM on December 29, 2019 [11 favorites]

Thanks for this. I really didn't realize how poor the success rate was for these procedures. I watch a lot of medical dramas, and they have really normalized hand, face, and penis transplants, making them seem just as safe and common as organ transplants, so it was good to have a reality check on the actual state of the practice.
posted by hydropsyche at 9:24 AM on December 29, 2019 [3 favorites]

I will say that the paragraphs on the informed consent were worrying. It’s one thing to be informed, understanding the potential risks and consequences is another thing completely. Sadly, humans are pretty bad at estimating and visualizing risk.

It seems staggering to me that these folks are expected to be experimental subjects with an impossible consent protocol and then go and work regular jobs which in most of these cases in this context seems dangerous.

The risk assessment is already impossible, the ethics are questionable in a vacuum, but then on top of that you've got the environment in which this all happening. Is it really consent when they're forced to make these decisions in an extremely ableist world? Not even just the people, but our infrastructure, resources, economy etc are explicitly built against them. I just feel like the topic of risk and consent is almost meaningless unless we address the root problems of the environment, almost all of which are man-made. But, like, where does that leave us? should we stop medical advancements until we reach socialist utopia and the patients don't also have to deal with prohibitive costs, lack of inclusive infrastructure, and labor for a living wage?

Back when I was around 16, my dad came down with an especially rare and terrible strain of mrsa, and we had to make similar impossible decisions. He went into a coma, and woke up with muscles and organs missing. He'll never recover, neither physically or mentally.
posted by FirstMateKate at 10:25 AM on December 29, 2019 [9 favorites]

The more I try (as a non-medical person) to understand how the immune system works, the more I have the feeling it is not well understood, by anyone. Looking up "sepsis" tells me it is apparently not the initial infection but rather the body's reaction to bacteria that causes septic shock. Wouldn't that mean someone with a transplant is permanently at risk for sepsis? How does this relate to lupus, rheumatism, plain old hayfever? I'm not expecting anyone to answer me here, just giving examples of how broad the topic really seems to me, based on one article alone that seems at first glance to be pretty specific.
posted by Armed Only With Hubris at 5:47 PM on December 29, 2019 [1 favorite]