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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

SeptimusHeap from Switzerland (Edited uphill both ways) Relationship Status: Mu
#1076: Jun 23rd 2014 at 9:37:55 AM

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
Pyrite Until further notice from Right. Beneath. You. Since: Jan, 2001 Relationship Status: Hiding
Until further notice
#1077: Jun 23rd 2014 at 10:14:51 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.
MarqFJA The Cosmopolitan Fictioneer from Deserts of the Middle East (Before Recorded History) Relationship Status: Anime is my true love
The Cosmopolitan Fictioneer
#1079: Jun 23rd 2014 at 11:55:32 AM

Before I start, I'd like to address something

If you're going to say this, you have no right to complain about "all the times that fiction ignores this little fact" about the downsides of prolonged hospitalisation. And fictional or not, every time I read that sentence, it just disgusts me more and more. You disappoint me, Marq.
... I came across as insensitively trivializing the plight of sick people without meaning to, didn't I? I am truly sorry for that. It seems that I got quite... emotionally detached, I think is the best descriptor... when writing that. For certain is that I genuinely believe that such things cannot and should not be treated as quantifiable and "weighable" in real life; whether or not such a thing is permissible in the course of writing a story that involves tragedy is something that I do not know for sure, though.

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'd bet isolation rooms are expensive as hell, so that's one way to bump up the cost.
Yeah, but of course, isolations rooms also force any visitors to stay on the side of the isolating barrier opposite to the patient.

Marq, re-reading your specification, I wonder if some congenital injury to the brain stem would work; it would probably require permanent ventilator support and some rigging with the heart, as well.
You mean messing with the normal process of respiration and/or cardiac operation? Didn't know that brain stem injury could do that. If you don't mind, can you explain the connection a bit?

^^^^I think if you're paying millions of dollars for treatment, you are probably paying for something that is either illegal or hasn't been researched enough yet. Quite possibly both.
... Illegal? How exactly can an illness be illegal? That makes no sen— Wait, you're not talking about illegal medication, are you?

Toji's sister was injured when a building fell on her courtesy of Shinji and EVA-01, as far as I recall - not a chronic illness.
I know, but that doesn't invalidate the Ill Girl element to her character nor the Healthcare Motivation involved. Also, IMHO one doesn't have to follow the exact format of something if there's something very different about the setting that, one way or the other, absolutely precludes a reenactment of the original circumstances to get the same result.

So I assume you're writing an AU with the part of Toji Suzuhara being played by Zach "one-legged moonsaults" Gowen or something, because otherwise, you'd have a much easier time cooking up your own illness and blaming it on Second Impact. (Blame everything on Second Impact, it's easier that way.)
No, Toji is not missing a limb (well, not at the start of the story; that might change later on, though).

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.

Earning a million or two USD per year is the upper end of the wage bracket for WWE employees, if this article is any indication. Your average wrestler probably won't earn that much.
Yeah, but this Toji is not your average wrestler (that said, he does get Overshadowed by Awesome for some time, before taking a level in badass). And, just to make sure we're on the same page, the numbers on that article don't include royalties and other bonuses. This Toji also works himself to the limit with little to no downtime due to his Healthcare Motivation; he needs every extra penny that he can get.

If you just want to chalk up huge medical bills, recurrent admissions due to chronic relapsing conditions are a far more likely scenario (in general) than a single continuous inpatient visit. There are plenty of illnesses which you could use once we relax those conditions, including the neuromuscular / degenerative diseases that we ruled out previously.
Well, I admit that it was a mistake on my part to phrase my requirements/preferences in a way that implied that "continuous inpatient visit" at a hospital is the only desirable outcome. Also, just to clarify a potential misunderstanding, when I said no to "loss of motor/sensory functions", I meant diseases that start with such function loss (e.g. limb loss, trauma-incuded quadraplegia/paraplegia), which seem kinda overused in fiction to be honest.

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.

I'm not an oncologist, but I do know that cancer treatment is !@#$ing expensive - and as Yuan mentioned, monoclonal antibodies in particular cost a bomb. For example: a four-dose course of rituximab (a monoclonal antibody used in treating lymphoma and leukaemia) costs $4, 000 USD per dose, and each course of treatment will usually require 4-8 doses per cycle... barring relapses. (Don't quote me on this, I'm looking at a Medscape article here.) It is one of five drugs used in the treatment regime for non-Hodgkin's lymphoma, where one cycle of treatment has been quoted as costing around $30k or more (including hospitalisation, inpatient and outpatient investigations, etc. etc. etc.) And that's not counting the cost of treating all the infections that you might come down with during the course of treatment with immunosuppressants and chemotherapy. You'll burn through your income very quickly without subsidies or financial support.
Oh trust me, I already know that it's, as you so eloquently put it, "!@#$ing expensive". I do believe I've already explained my particular issues with using cancer as the illness of choice, but I would also like to add another reason: Like limb loss and paralysis, it's among those illnesses that, in my experience, are stock choices for this kind of character (usually without even specifying what form of cancer is it; there's a reason why "cure for cancer" is a highly misleading term).

  • 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.
... Whoah. That's a lot of things to consider.

Congenital brainstem defect: *shudder* Those things are scary. Exact effects vary depending on the size and location of the lesion, but if your patient with a brainstem defect needs mechanical ventilation, we are so not talking about the kind of patient that can walk and talk.
... <crosses out "braimstem defect" from the list>

You could go the psychiatric hospital route. Something like Delusional Parasitosis causing the patient to pick apart their skin or ingest caustic substances (which in turn means confinement/restraint needed). Add a suicide watch for a need for constant monitoring and/or supervision perhaps?
I already ruled out mental illnesses from the get-go (it's in the note in this post).

Hmm. No real medical training here, but would a disease that severely compromises the child's immune system (or even them having functionally no immune system, a la The Boy in the Plastic Bubble) (imDb link here) work? It would at least require near total isolation...
It would, but the resulting isolation would severely complicate if not preclude several of the scenes that I had in mind involving the character. Also, what Septimus Heap and Pyrite said.


Now, to respond to a PM on the topic:

Well, that... and, I don't exactly get why you're trying to find a mystery illness that fits such firm, set criteria, rather than finding one that's close enough for government work and using it as a spring board.

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.

As I've already pointed out earlier in this post, I've unintentionally wrote my intended traits of the illness in question too restrictively for what I actually meant.

Fiat iustitia, et pereat mundus.
SeptimusHeap from Switzerland (Edited uphill both ways) Relationship Status: Mu
#1080: Jun 23rd 2014 at 12:03:00 PM

Maybe you can use a disease that does cause physical impairment but is liable towards a sudden improvement.

"For a successful technology, reality must take precedence over public relations, for Nature cannot be fooled." - Richard Feynman
MarqFJA The Cosmopolitan Fictioneer from Deserts of the Middle East (Before Recorded History) Relationship Status: Anime is my true love
The Cosmopolitan Fictioneer
#1081: Jun 23rd 2014 at 12:06:39 PM

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.
SeptimusHeap from Switzerland (Edited uphill both ways) Relationship Status: Mu
#1082: Jun 23rd 2014 at 12:11:50 PM

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 Feynman
rmctagg09 The Wanderer from Brooklyn, NY (Before Recorded History) Relationship Status: I won't say I'm in love
joeyjojo Happy New Year! from South Sydney: go the bunnies! Since: Jan, 2001
Happy New Year!
#1084: Jun 23rd 2014 at 7:31:35 PM

About that "UP" wristband: Now I'm actually debating getting one. I'm not sure I actually have a good sleep pattern and the other features could help keeping my calorie in/outtake in check, and that darn thing is on sale. Hmm, decision decision.

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
rmctagg09 The Wanderer from Brooklyn, NY (Before Recorded History) Relationship Status: I won't say I'm in love
Yuanchosaan antic disposition from Australia Since: Jan, 2010
antic disposition
#1086: Jun 24th 2014 at 2:12:11 AM

@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
SeptimusHeap from Switzerland (Edited uphill both ways) Relationship Status: Mu
#1087: Jun 24th 2014 at 2:17:13 AM

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 Feynman
QuestionMarc Since: Oct, 2011 Relationship Status: Having tea with Cthulhu
#1088: Jun 24th 2014 at 4:27:34 AM

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.

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.

MarqFJA The Cosmopolitan Fictioneer from Deserts of the Middle East (Before Recorded History) Relationship Status: Anime is my true love
The Cosmopolitan Fictioneer
#1089: Jun 24th 2014 at 11:03:44 AM

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 will have to keep this in mind for the Fictional Disease approach, then.

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).
... Really? I sincerely have difficulty wrapping my mind around this. How am I (non-sexually) fetishizing? (Non-sexual fetishization is something that I am very unfamiliar with, even if the term itself isn't new to me.)

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.
Any suggestions on how to fix my mental image, then?

I know you do not have this experience, though, and the way you've elaborated on it makes more sense.
Mind if you elaborate on the second half of this line? I'm genuinely interested in knowing what you're referring to here.

Fiat iustitia, et pereat mundus.
SeptimusHeap from Switzerland (Edited uphill both ways) Relationship Status: Mu
#1090: Jun 24th 2014 at 11:15:36 AM

Any suggestions on how to fix my mental image, then?

Check out the case reports of Lysosomal storage diseases in their OMIM links.

"For a successful technology, reality must take precedence over public relations, for Nature cannot be fooled." - Richard Feynman
rmctagg09 The Wanderer from Brooklyn, NY (Before Recorded History) Relationship Status: I won't say I'm in love
joeyjojo Happy New Year! from South Sydney: go the bunnies! Since: Jan, 2001
Happy New Year!
#1092: Jun 24th 2014 at 1:41:40 PM

Well as long as you don't become a hypochondriac about it get one, the sleep schedule pays for itself.

What's so funny about pedometer?tongue

hashtagsarestupid
QuestionMarc Since: Oct, 2011 Relationship Status: Having tea with Cthulhu
#1093: Jun 24th 2014 at 2:23:34 PM

I sure hope I can improve my schedule. If yes, it'll be worth it.

As for pedometer, it's one suffix-swap away from describing a sexual deviant.

Euodiachloris Since: Oct, 2010
#1094: Jun 24th 2014 at 2:29:28 PM

Which is what you guys get for getting rid of "ae". tonguewink

Achaemenid HGW XX/7 from Ruschestraße 103, Haus 1 Since: Dec, 2011 Relationship Status: Giving love a bad name
HGW XX/7
#1095: Jun 24th 2014 at 2:30:50 PM

On paedos.

Schild und Schwert der Partei
joeyjojo Happy New Year! from South Sydney: go the bunnies! Since: Jan, 2001
Happy New Year!
#1096: Jun 24th 2014 at 5:55:54 PM

^^^Dude...

hashtagsarestupid
Pyrite Until further notice from Right. Beneath. You. Since: Jan, 2001 Relationship Status: Hiding
Until further notice
#1097: Jun 24th 2014 at 6:24:50 PM

[up][up][up]Wouldn't have helped: it's spelt "paedophile" too, and the infamous "paediatrician hunt" was a UK thing... So yeah.tongue

[Tasteless joke redacted.]

edited 24th Jun '14 6:38:08 PM by Pyrite

Not a substitute for a formal medical consultation.
rmctagg09 The Wanderer from Brooklyn, NY (Before Recorded History) Relationship Status: I won't say I'm in love
Madrugada Since: Jan, 2001
#1099: Jun 24th 2014 at 8:19:14 PM

But Pedometer is from the Latin ped- foot, not the Greek pais- child. The Latin never uses the ae ligature. So keeping the paedo- would make it less confusing.

edited 24th Jun '14 8:20:07 PM by Madrugada

Pyrite Until further notice from Right. Beneath. You. Since: Jan, 2001 Relationship Status: Hiding
Until further notice
#1100: Jun 24th 2014 at 9:22:50 PM

*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!tongue

edited 24th Jun '14 9:42:31 PM by Pyrite

Not a substitute for a formal medical consultation.

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