This is a thread about diseases, medicines, treatments, medical insurances, hospital policies, and everything else interesting about human body here.
IMPORTANT NOTE: This is NOT a place for medical diagnosis and advice. For those, please consult certified medical professionals of appropriate fields.
Edited by dRoy on Feb 20th 2020 at 2:33:51 AM
Yeah, such immunodeficiencies are usually treated with bone marrow transplants (and possibly gene therapy, which is promising but not without risks), and you support these patients with intravenous immunoglobulin and antibiotic prophylaxis while waiting. The bubble is tech from the '60s and isn't really recommended these days. In addition, such severe immunodeficiencies usually present early (say, death within the first one to two years of life if untreated) and should be treated early - staying in hospitals for years on end shouldn't be happening.
If you're invoking reverse isolation as the indication for prolonged hospitalisation, the problem is that the patient is cooped up in a single room, so while the patient can probably move around freely in the confines of the room (wheelchair not required), that's all they get. And as mentioned previously, I can't think of a scenario these days where you have to reverse-isolate a patient for years on end.
(Also, I don't think psychiatric disorders fit the concept of the elegant, tragic kind of suffering that Marq's fetishising, unless we invoke The Ophelia. And that rarely works out in real life.)
edited 23rd Jun '14 11:06:07 AM by Pyrite
Not a substitute for a formal medical consultation.Before I start, I'd like to address something
All I meant to say is that if my slowly-dying relative's illness has no visible signs that reflect their very bad state of health (who'd associate slightly pale skin and loss of weight with a fatal medical condition?), then I'd find that more psychologically shocking and distressing to myself than if there were such signs. That is, the disconnect between what little signs are visible to the layman and the actual seriousness of the patient's condition would make it that much harder to take the news of their impending fate well, on both the patient and their family/friends. It's one reason why I find the more physically hidden forms of cancer (i.e. the ones that affect internal body parts), and neurological diseases like ALS, as having a creepy kind of sinsterness that I don't get from other, much more physically noticeable diseases.
... Or maybe I'm right about having made a faux pas for the wrong reasons. If that's so, then please someone kindly explain to me what I did wrong.
Now that I got that out of the way.
I think you're correct on the second half of this quote, though; a Fictional Disease would be the easier approach. That said, I don't like to invent something only to discover that there's a real-life thing (or several) that could serve my purposes just as well.
That said, Nursing homes
, whose existence I previously was not aware of, seem like a viable alternative if the disease in question is non-contagious, right?
... Home health nursing
? Home care
? Yeesh, just how many forms of providing prolonged healthcare outside a hospital are there? I'm only familiar with home healthcare that is provided to people with effectively total paralysis, because that's what happened to my late maternal grandmother.
- Chronic combined renal and liver failure: Well, that's an interesting combo - I'm most familiar with hepatorenal syndrome, but in those cases, the kidneys usually recover once the liver issue is sorted out. (Looking it up now: polycystic kidney / liver disease, Hep B / C with glomerulonephritis, congenital protein-depositing diseases... Yeesh.) Tackled individually:
- Liver failure: Crap, it's been a long time since I handled any transplant patients. Assuming chronic rejection of a previous liver transplant, yes, immunosuppressants are necessary, but it's rare for a patient to require reverse isolation unless they're neutropaenic due to haematological or oncological reasons (either from the disease or from the treatment). And chronic rejection is slow, so even if the patient's on the waiting list, they shouldn't need an inpatient stay unless acute complications brought them in, and even then we're not talking about years of hospitalisation.
- Kidney failure: Stable patients usually get haemodialysis three times a week or peritoneal dialysis, and that can be handled in the outpatient setting.
- Not sure how frequent your "constant monitoring and treatment" is, but requiring blood tests more than once a day usually suggests clinical instability. Not too great.
Now, to respond to a PM on the topic:
The things you seem to want just... don't really exist in a single bundle. -_- Nor does the old institutional care thing exist these days (and, it barely existed even in the 1920s in the way people think). <_<
Death rates in long-term institutions (mental or otherwise) were one of the reasons why they were abolished.
Can you elaborate, please?
(And I am serious about wanting to know if I guessed my faux pas wrong, BTW.)
Fiat iustitia, et pereat mundus.I think multiple sclerosis can manifest sudden improvements. Also, if you have somewhat advanced medicine, "experimental treatments" for neurodegenerative diseases may cause suddn improvements.
<Also, I really hate that TV Tropes reloads pages>
"For a successful technology, reality must take precedence over public relations, for Nature cannot be fooled." - Richard FeynmanCommon BPA substitute, BPS, disrupts heart rhythms in females
Well it depends if you actually need it. If you're getting regular checkups and have a clean bill of health you shouldn't.
Sure I would say there is no harm in it and better safe than sorry but you don't want to start micromanaging your pulse and blood pressure every time there's a spike in your reading.
hashtagsarestupid@Marq: I meant illegal treatments, yes. For example, medical tourism for stem cell treatments which have been banned in certain countries (due to insufficient research and regulation) is fraught with risk and carries a high price tag. If there's no cure for one's disease, though, a person may be tempted to try it.
I strongly dislike the Littlest Cancer Patient trope. It's manipulative and paints an unrealistic image of what being a chronically ill child is like. The way you were describing the kind of suffering and aesthetic you wanted was off-putting, as it was...I would almost use the word fetishistic, because of how it was idealised (not in a sexual manner). Once you've seen children who are dying of terminal illnesses, nothing quite approaches the reality of that tragedy, so I also disliked what you said. I know you do not have this experience, though, and the way you've elaborated on it makes more sense. "Doctor Who means never having to say you're kidding." - Bocaj
From ^^:
"This is the strongest published data that argues against recent claims that RNAi exists in mammals,
Uh-uh. Evidence doesn't support your assertion, sire - RNAi covers a lot more than just antiviral defence. At least specify "RNAi as an antiviral defence mechanism"
"For a successful technology, reality must take precedence over public relations, for Nature cannot be fooled." - Richard FeynmanSure I would say there is no harm in it and better safe than sorry but you don't want to start micromanaging your pulse and blood pressure every time there's a spike in your reading.
Well, there's more features than "know how long you sleep", and I think they sound kinda useful. For instance, I don't know how long I actually need to fall asleep, and I think that information would help in setting a sane sleep schedule. The thing which interests me the most is that it can apparently wake you up just at the end of a sleep cycle to make you feel more refreshed. Now, I wouldn't blindly believe these kind of claims, but I've seen a couple of people now actually go over the fact that how refreshed you feel when waking up is related to what part of your sleep cycle you wake up in. And from anecdotal experience, I also have moments where I sleep very little, but wake up 100% alert or sleep a lot and feel really shitty. I can't say with certainty, but I have a suspicious doubt that it's because of my sleep cycles.
A pedometer (pedometer? I thought that was something else entirely) is a generic thing, but I can find it a use certainly.
I don't think I'd consider buying it if there wasn't good reviews and that it wasn't on sale (both on amazon and in my local shops for that matter).
Not sure what you mean "micromanaging [my] pulse and blood pressure". That's not the purpose of this device, and I'm not the kind to micromanage that kind of stuff. Well, I guess I have attacks of "manual breathing" every so often, but that's another matter completely.
Any suggestions on how to fix my mental image, then?
Check out the case reports of Lysosomal storage diseases
in their OMIM links.
![]()
![]()
Wouldn't have helped: it's spelt "paedophile" too, and the infamous "paediatrician hunt"
was a UK thing... So yeah.
[Tasteless joke redacted.]
edited 24th Jun '14 6:38:08 PM by Pyrite
Not a substitute for a formal medical consultation.*smacks forehead* I parsed Euo's sentence wrongly. Clearly, I'm no linguist.
...And I now have a very suspicious-looking Google search history. Thanks, guys!
edited 24th Jun '14 9:42:31 PM by Pyrite
Not a substitute for a formal medical consultation.

These diseases can usually be treated with a bone marrow transplant. To my knowledge, leaving someone in a bubble is something to be avoided, if the case reports I saw on OMIM can be taken as evidence.
"For a successful technology, reality must take precedence over public relations, for Nature cannot be fooled." - Richard Feynman