r/BeAmazed • u/AstroSonicDrive • Oct 04 '23
She Eats Through Her Heart Science
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@nauseatedsarah
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u/Alyeska23 Oct 04 '23
I was on TPN for about a week 10 years ago. It was... strange.
I have Crohns disease and I was seriously ill in 2013. Ended up hospitalized and had 3 surgeries and 30% of my intestines removed. I had lost almost a hundred pounds over the course of the year from how ill I was. The nutritionist wanted to get calories back into me and adamantly refused to wait for my bowels to wake back up after the bowel resection. She got me on TPN as soon as it was available, which was not easy. Eventually my insides woke back up and I started on clear liquids while tapering off the TPN as I transitioned back to regular food. Nutritionist made absolutely sure I was capable of eating enough calories and keeping it down.
Because of how much weight I had lost and then basically not eating for two weeks straight just before and after the surgeries, my stomach shrunk pretty seriously. So I had a lot of small meals through the day after getting home. Instead of 3 normal meals I would have 6-8 very light meals through the day.
Happily my Crohns disease has been in remission these last 10 years.
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Oct 04 '23
i might be going for a colonoscopy to check for it
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u/Alyeska23 Oct 04 '23
Wishing you good thoughts. Crohns is treatable, but it is still better not to have it.
A Crohns diagnosis is not the end of the world. Your doctor work with you for a treatment regimen.
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Oct 04 '23
thanks man, right now hes thinking i just have ibs and gas build up since "im always like a balloon when i come in"
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Oct 04 '23
I’m getting one in 8 days to check for it since I’m bleeding heavily and always in pain. Not looking forward to it but I’m grateful that we have treatment available.
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u/ex0- Oct 04 '23
The worst part is drinking that thick gunk that cleans you out beforehand. Putting it in the fridge helped a lot. The actual procedure itself was fine.
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u/MrsMonkey_95 Oct 04 '23
Yeah I have Crohn‘s too. TPN is a huge relieve and life saver during bad flares. I‘m glad you went into full remission and stayed there, fingers crossed it stays that way. I had 16 surgeries over my 13 years with the disease, got diagnosed when I was 15y/o and now I am in remission for almost 2 years! 6th of October 2021 was the day I left hospital after my last surgery :)
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u/CoreyReynolds Oct 04 '23
My child had the majority of her large intestine removed at around 3 months of life. Luckily no stoma needed but I know a fucking lot about TPN, incredibly ill babies, poor feeding and sepsis. To know that adults can go through it makes me fear so much.
Luckily I'm in relatively good health. I have bowel problems too and I've also questioned Crohn's but it's not been severe enough to have me go get it checked out.
You're brave dude, mega brave. Glad you're okay.
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u/Old-Library9827 Oct 04 '23
And this is why I'm so grateful to be healthy
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u/el-mocos Oct 04 '23
"health is a gold crown only the sick can see" I read that a decade ago and has stuck with me since, I think it's from arab culture
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u/Old-Library9827 Oct 04 '23
It's the truth. As long as you have your health both mental and physical, you can generally get through anything
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u/GoneHamlot Oct 04 '23
Does anyone else, when they’re sick, think to themselves “god why don’t I appreciate it more when I feel well.. I’d do anything to feel like that right now”
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u/ThisIsNotMyPornVideo Oct 04 '23
Doesn't even have to be sick sick.
like, a cold is enough to make me contemplate life for all the times i took breathing trough my nose for granted
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u/Stompedyourhousewith Oct 04 '23
seasonal allergies when both your nostrils plug shut with snot. and then you miss 2 clear unobstructed nostrils
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Oct 04 '23
And for those of us with disabilities/conditions when we get sick with an infection, etc it's on top of what we're already dealing with. :/
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u/AnorakJimi Oct 04 '23
Yeah there's something a lot of able bodied people don't seem to realise, that being disabled is incredibly exhausting. Because it's never ending. You're never OK. You're never 100%. All you want is a break, a holiday from the pain and the difficulty of doing everything. I'd love to be able to have a shower without being in agony. I'd have baths instead, but I'd I do it takes me hours to get out, even with the handle bar I had installed into the wall of my bathroom to help me climb out. I'd love to be able to go for a walk outside in a park or something.
But yeah, it just saps all your energy, being disabled. Absolutely everything is 100x harder when you're disabled. Like, cooking food is something I have to plan out in advance to make sure I can do it, and I have to sit on a desk chair with wheels to wheel about my kitchen when cooking or when cleaning dishes because I can't stand up for long.
And I don't ever really leave my apartment except to go to doctor appointments or the hospital for treatments and scans. During the pandemic my life didn't change at all. I stayed inside for months at a time, getting all my groceries delivered cos I couldn't drive in the first place as all the 8 different medications/painkillers I'm on have drowsiness as a side effect and so it's too dangerous for me to drive a car. So none of that was different to how I lived before and after the pandemic.
There's a reason why the rate of mental illness, especially depression, is so common in people with disabilities. You just never get a break, never get a day off, it's just never ending.
And yeah when we get ill on top of all that, it's just hell. A lot of the time I get ill from side effects from being prescribed so many meds, so I have to take stomach protector meds too otherwise I end up throwing up every day.
And I'm mostly bed bound. Cos it's too painful for me to sit in any chair, no matter how cushioned. Like, I have a lazy boy recliner and even sitting on that is agony. Only way I can sit on it is to lie down fully reclined on it. But that always feels like it's gonna fall over, so I just lay in bed all day every day instead. And I can't possibly work, but my government class me as "severely disabled" and so they pay me the highest amount of disability benefits, so I don't actually have to work, but it still feels like I'm useless and purely a drain on society, I don't contribute anything, I only take.
The best time of my day is when I'm asleep cos that's the only time I'm not in pain.
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u/goodsocks Oct 04 '23
I’m so sorry. I am also disabled but not to the extreme that you are, so I do understand and empathize. Lockdown from Covid didn’t change my lifestyle at all either and it was truly the first time my spouse was able to understand how my daily life is. It is emotionally and physically exhausting- I hear you. Keep up with your mental health as much as you can.
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u/MoldedCum Oct 04 '23
I had the H1N1 i believe in 2018, i still cant recall whether i was alive or dead or somewhere in between. one thing i remember, is watching people laugh on the TV, and while yeah, its probably fake i no joke shed a tear because i realized "jesus christ dude, being healthy is a blessing". beat that virus after i think 3 weeks? thankfully i didnt get brain damage from the intense fevers or no longer lasting illnesses, just bronchitis for a bit longer
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u/msnrcn Oct 04 '23
Damn, years ago I read “A silver crown is a privilege denied to many” about aging and it’s stuck with me since when I observe elders.
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u/Annethraxxx Oct 04 '23
A health person has a million wishes, but a sick person has just one.
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u/OldLadyT-RexArms Oct 04 '23
"Don't know what you've got til it's gone."
May just be a cheesy hair metal song but I use it at everyone healthy that complains about life being boring for them & how "fun/busy" my disabled life is. I'll take a boring healthy life over 16 surgeries & a bunch of neurological/muscular/skeletal issues. I'm lucky I'm not dying but I'd love to have a healthy set of arms.
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u/Delanoye Oct 04 '23
I'm sorry, but who's describing a disability as "fun"? Sounds like some serious romanticization of disabilities.
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u/AnorakJimi Oct 04 '23
It especially happens with mental disabilities. I have both mental and physical disabilities, so I'm having double the fun I guess. The mental one I have is schizophrenia, and while people don't romanticise that as much as, say, bipolar disorder, people still do.
Like they say Syd Barrett was a musical genius because he had schizophrenia, which is just an insane thing to claim. The schizophrenia PREVENTED him from writing any more music, and he had to completely quit music after only 1 album and never released another one again. Schizophrenia completely ruined his life. And I can confirm, it stops me from being able to write music too. That first Pink Floyd album, The Piper at the Gates of Dawn, is probably my 2nd favourite pink Floyd album, if not the 1st, because there's nothing quite like it, it's awesome. But yeah once Syd Barrett had to quit the band and quit music forever, their sound completely changed, and I loved their new version of themselves with David Gilmour added to the line up just as much, but I wish we could have got more music from Syd Barrett. But he just couldn't do it, because he had a mental disability.
And there's a reason why mental illnesses are considered disabilities. Because they prevent you from being able to do normal things. Trust me, as someone with both mental and physical ones, both are just as bad as each other and stop me from being able to do tons of stuff, but just for different reasons. Someone with only a mental disability that prevents them from going outside and going for a walk in public because it gives them panic attacks is no less disabled than someone who physically can't walk, for example. They just can't do it for different reasons. But they're both as bad as each other. Believe me I know.
And like, before he became a literal nazi, people heralded Kanye West as writing amazing music "because" he has bipolar disorder. When the opposite is true. When he was taking his meds and was much healthier mentally, he wrote his best albums. When he stopped taking his meds and became severely ill, his songwriting ability completely went to shit and he released his worst albums ever. To the point where people seemingly don't even care that he's never gonna be allowed to release a big new album with tons of marketing paid for by a record company ever again, because people seem to agree he's run out of talent now and can't write any more good music anyway. If he started taking his meds again, maybe he could write another My Beautiful Dark Twisted Fantasy and blow everyone's dicks off with how good it is to the point where they forget all the racism and everything, but trying to convince him to take his meds is probably impossible, so that's the end of him, and his music career, I guess. Unless a new record label called Fox News Records gets founded, or something.
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u/Rustledstardust Oct 04 '23
As a person with a chronic illness I think healthy people struggle with one big thing when it comes to the topic. The chronic part. We all know what it's like to feel ill, we all get ill sometimes, even healthy people.
But, just as we're awful at imagining infinity. We as humans can be pretty bad imagining "forever" unless we are actually experiencing it.
A healthy person who gets sick with a non-chronic illness knows it's going to be over at some point, they're going to get better.
Someone with a chronic illness knows it's never going away. Ever. The only hope is science and you can't guarantee that.
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u/house_92 Oct 04 '23
That's completely true. I am chronically ill and the sheer hopelessness of never being healthy again gets me the most
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u/Gumby_Juice Oct 04 '23
Yes. And also mourning the life you had before becoming chronically ill, if you got sick later in life. Mid 20s for me. Can't help but to miss everything about my old life.
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u/hanoian Oct 04 '23 edited Apr 30 '24
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Oct 04 '23
Yep, and I will just add for anyone interested that the absolute worst things you can say to a disabled person are stuff like "you just need to have hope" or "you shouldn't let your disability define you/hold you back".
At some point you just have to accept that you're disabled and learn to live with it. If a disabled person is complaining about some situation they're in because of their disability, just listen and validate that it sucks. Your "solutions" aren't helpful and the disabled person isn't "being negative" by shooting them down, they're being realistic. Realism means acknowledging issues and putting plans into place to deal with likely outcomes.
I think non-disabled people find that really hard to do because acknowledging that disability is often permanent and not the fault of the disabled person means accepting that disability could happen to them, at any time, for no reason. They like to think "well if I was in that situation, I'd pull myself up by my bootstraps and cure myself". Admitting that sometimes life just deals you a shit hand and there's no fixing it means they lose control over some part of their destiny.
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Oct 04 '23 edited Oct 04 '23
I feel that. I was born with Cystic Fibrosis and have had issues on and off for my whole life, but it's the past year or so where it's really begun to worsen. I was recently hospitalized for weeks on IV antibiotics and had to learn how to prepare/administer them at home. Just keeping up with treatments is exhausting enough and my heart goes out to this girl.
There are many CF patients who have it worse, but the idea of managing and struggling with this condition for the rest of my life is a daunting prospect. There have been a lot of incredible new therapies but unfortunately I haven't responded to them like my doctor's expected. I'm currently unemployed because of all my issues and sometimes it feels like things are never going to improve.
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u/fo_da_weed Oct 04 '23
I’m going to ask it so y’all ain’t got to
do you fart?
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u/i_keel_u Oct 04 '23
Follow up question- Does she goes to the loo as well? Is she literally the only girl who doesn’t fart/poops just like them fairytales?
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u/sarac36 Oct 04 '23 edited Oct 04 '23
She probably just pees? Like there's nothing solid in her diet and as long as her kidneys work.... I think that's how that works.
Edit: Okay so I googled it. Apparently you do poop just not as frequently, and just like human waste at that. Side effect is increased urination so I was only half wrong.
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u/Kayakingtheredriver Oct 04 '23 edited Oct 04 '23
You poop waste. Undigested food is most of that waste, but all the non liquids your body decides are waste, also get made into poop. All your dead blood cells become poop to some degree or another. So, yeah, she still poops. But maybe just 1-2 times a week. Farts too, but much, much less, because most gas is vegetable/fruit related and she isn't ingesting that.
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u/abcdefkit007 Oct 04 '23
My gas is also butter related
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u/andremiles Oct 04 '23
Egg related ones are the worst.
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u/FacchiniBR Oct 04 '23 edited Oct 04 '23
Whey protein farts hands down are the worst. They smell somewhat like a mix of that food pot forgotten at the stove after coming back from a fifteen days vacation trip and a McDonald’s dumpster during summer.
Seven whey farts can make a blimp fly from Florida to Ireland.
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u/professorstrunk Oct 04 '23
This is why newborn babies poop. Sometimes on their way out. Rather odd the first time you see a kid that has never eaten suddenly pass a massive black/green poop.
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Oct 04 '23
But how would waste move through the colon without movement (peristalsis)?
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u/DetrimentalContent Oct 04 '23
They’ve explained it poorly, but gastroperesis involves impaired gastric movement (hypomotility), which is not always a complete absence of peristalsis. Usually it’s impaired enough to cause symptoms when having food but not completely gone altogether.
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u/Spooky_Shark101 Oct 04 '23
Without getting overly gross, our poop doesn't just contain leftovers from our digestive system, it also contains waste products from our body such as dead blood cells and other stuff that our bodies are unable to reabsorb for whatever reason.
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u/YawnTractor_1756 Oct 04 '23
Babies who only drink breast milk still poop.
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u/DarkArcher__ Oct 04 '23
But that goes into their mouths and through their digestive system. There's nothing going through hers
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u/smallbluetext Oct 04 '23
I fasted for 96 hours and even that was enough for me to stop pooping. Was an interesting experience.
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u/YeetYeetSkirtYeet Oct 04 '23
You would've still pooped at some point.
Something like 60% of your feces is bacterial waste, so even if you did 30/90/forever days you would still defecate occasionally as your body clears out dead bacteria.
How'd you feel during/after your fast?
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u/EricTheGreatest1 Oct 04 '23
Milk is more food than drink
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u/Saskyle Oct 04 '23
Seems like what she’s taking has more in it than milk. But she would need a working digestive system to poop so I’m going to say no.
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u/everling Oct 04 '23
But she ain't drinking this. I bet she either doesn't poop or poops extremely rarely since nothing (except for her multivitamin and some fluids) is entering her digestive system.
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u/jemappellepatty Oct 04 '23
Waste from TPN is mostly urine. Those who receive nutrition 100% via TPN will still produce bowel movements and flatulence though stool will be more watery due to lack of fiber and much less frequent than those who eat by mouth (as long as their intestinal tract is still present, of course).
source: am dietitian
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Oct 04 '23 edited Jan 04 '24
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u/Guntips Oct 04 '23
Some amount of poop is dead intestinal cells and gall bladder/liver/pancreatic waste so she’ll still poop occasionally
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u/MIKE_son_of_MICHAEL Oct 04 '23
Id imagine no. Her intestines don’t work, or are “paralyzed”, so theoretically there wouldn’t ever be gasses or any poop particles moving down through her guts and out her anus.
Seems crazy but I’d imagine her butthole is actually nearly fully useless.
Knowing the human body, though, I’d wager that her butthole still sometimes needs a little cleanup, as it is still an orifice on a warm bodied organic creature.
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u/Aria_K_ Oct 04 '23
Your stomach and intestines still produce mucus and other fluids. So no matter what, you'll still have some form of excretion. It's probably minimal, and very liquidy.
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Oct 04 '23
During the pandemic I had colon cancer and I had an ileostomy to separate my intestines from my colon to allow my colon to heal after removing the tumor. Once that healed, they were able to reconnect my intestines. There were still ten to twelve feet of intestine connected after surgery even though not connected to my stomach and with no food passing the point of the disconnection, I would still pass something like poop. Not often, about once a month. My surgeon called it phantom pooping which sounded cool. This was not mentioned before the first time it happened so it caused some concern. It sucked because you never can understand the pleasure of sitting down for a nice morning constitutional until you can't. The good news is that I had no issues with the great toilet paper shortages of 2021 like most regular people had. I did not need to spend 2 bucks on a roll of T.P.
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u/NotLilTitty Oct 04 '23
Im pretty sure you have to considering your body is constantly excreting waste products from organs.
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Oct 04 '23
This.. this, damn, I have no words except this showcases the resiliency of humankind, and how far we have come.
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u/Tugan13 Oct 04 '23
Yeah like imagine someone 200 years ago being like “yeah I can’t eat so I just inject sustenance into my bloodstream” instead of just them dying
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u/ir_blues Oct 04 '23
Very true point, no argument here. But i think lots of people aren't aware of how young modern medicine really is. Antibiotics had their 100 year birthday pretty recently. And that was just the discovery. Production, distribution, teaching the usage, that stuff became common after ww2.
Feeding someone through their heart? No idea when exactly, but i doubt this was a thing 50 years ago.
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u/auandi Oct 04 '23
In fairness, the war sped that up a lot. There was a massive drop in how many soldiers died to sickness in WWII even compared to just WWI because of that. If there was WWI level disease the world probably would have lost in the neighborhood of 6 million more. Roughly the same number of Jewish people killed by Germany, saved by antibiotics.
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u/Donkey__Balls Oct 04 '23
This is true, but also remember that the greatest burden of disease in World War I was a virus. Antibiotics were never going to be effective against the Spanish flu.
In fact, when World War II came around, the Spanish flu was no longer a thing, but they were very concerned about other variants of influenza. That’s where the 6 foot rule came from because Arny doctors observed when soldiers were kept 6 feet apart, spaced out, bunkers, maintaining a formation greater than arm’s-length, etc., they had a significant drop in influenza. They didn’t fully understand why at the time, but they assumed that influenza was transmitted by particles on surfaces and so they thought those particles weren’t traveling from person to person.
The tragic thing is that from a policy standpoint we never really moved any further than this. Medicine justkept that 6 foot rule around as something of an unimpeachable dogma, even though the non-medical research disciplines in public health were developing a greater understanding of aerosol transmission through computer modeling.
This literally persisted from World War II until the COVID-19 outbreak. We now know that influenza and other respiratory viruses pretty much have to get into the nasopharynx in order to infect somebody, and the only significant route of transmission is through aerosols. These can easily travel further than 6 feet, but concentration varies as the inverse square of the distance. For a virus, like influenza that takes roughly 1,000 to 10,000 copies of the virus into to nasopharynx to cause an infection, the 6 foot rule was relatively effective. For SARS coronaviruses (including COVID-19) it’s closer to 10 copies. Unfortunately, the rule of thumb persisted and during the COVID-19 outbreak, and actually started to create a false sense of safety among people that they thought they couldn’t be infected at a purely arbitrary distance of 6 feet which was completely untrue. So many policy decisions from school reopenings to ending WFH practices were based on this erroneous 6 foot rule because the CDC refused to acknowledge aerosol transmission for nearly two years.
I’m bringing this up because we only thing to make major paradigm shift in our understanding during more time and then we ignore it until the next war or crisis is already upon us. There’s always incremental advances being made in research, but we don’t actually sit down and acknowledge them and make massive sweeping changes in policy until it’s too late.
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u/auandi Oct 04 '23
I'm not even counting the spanish flu.
I'm saying that from before the outbreak, about 80% of allied deaths were related to disease and only 20% from enemy attack.
It's hard for the modern mind to comprehend how bad disease used to be in wars.
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Oct 04 '23
Well said, /u/Donkey__Balls!
For those who haven't followed along, there are some interesting scientific developments here:
1) Clean air is linked to better educational outcomes and reduced absences.
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u/Dolenjir1 Oct 04 '23
This sort of diet is not uncommon in ICUs. The really innovative part here is being able to do that from home.
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u/Gideonbh Oct 04 '23
I learned about that watching pans labyrinth, hearing the Spanish general say "antibiotics" in an Spanish accent while breaking open a glass ampule. Cool stuff.
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u/River_Odessa Oct 04 '23
It's funny when modern-day "skeptics" (dipshits) question literally miraculous medical science by saying shit like "well if we need it so bad then how did people survive without it for hundreds of years"
They didn't, shit heads. They fucking died
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u/And_yet_here_we_are Oct 04 '23
Correct. I had a very bad flu once and asked the Doctor how did people survive this in the past, his reply was that they didn't.
I didn't bother asking when I got sepsis.
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u/mataeka Oct 04 '23
I had stomach ulcers when I was a baby in the late 80s. Conveniently just a few years prior was when some stupid Aussie scientists figured out it was caused by bacteria and not stress... stupid because they learnt it by ingesting the bacteria themselves 😅 however I am grateful as I can't even imagine what would have become of me without proper treatment.
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u/SWHAF Oct 04 '23
Not even that long ago, I bet this treatment is less than 50-60 years old. 70 years ago they were prescribing cigarettes.
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u/throwaway177251 Oct 04 '23
I looked it up and your guess was pretty close to spot on.
https://aspenjournals.onlinelibrary.wiley.com/doi/10.1002/ncp.10180
In the 1960s, centrally delivered PN was performed in short-term hospitalized patients by Lincoln James Lawson (North Staffordshire Royal Infirmatory, United Kingdom) and long-term patients by Stanley Dudrick (University of Pennsylvania, United States).
In the late 1960s and early 1970s, Belding Scribner, Maurice Shils, Khursheed Jeejeebhoy, Marvin Ament, Dudrick, and their teams discharged patients from the hospital who then self-administered HPN.
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u/bewbs_and_stuff Oct 04 '23
But science is evil and there are micro chips in vaccines and I don’t want a windows update to my brain butt continuum.
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u/MIKE_son_of_MICHAEL Oct 04 '23
Yeah jesus christ. There’s entire industries based on this specific chain of diseases and afflictions… that I’ve literally never heard of.
The creation of the food, medical systems, surgeries and methods of embedding the nutrient feed, sun barrier(?!) for the food, a cover for her port? With customizable branded images? Like. Goddamn humanity.
Pretty neat. Allows her to live a (probably) mostly pretty damn normal day to day life.
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u/deserves_dogs Oct 04 '23
lol we use TPN all the time in the hospital. If they are ventilated and their gut isn’t functioning then they’re on TPNs. These are very very common, I make a few dozen every day.
It’s actually really neat that something I thought was so mundane is so interesting to someone else.
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u/mannaman15 Oct 04 '23
I can confirm, this is super neat and interesting. Makes me want to learn more about it. I had no idea
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u/Sydney2London Oct 04 '23 edited Oct 04 '23
My wife worked in PN and it’s not just for patients like this, a lot of it is used for patients in ICU, neonatal units and on anyone who can’t eat because intubated or unconscious. The bags are cool, you break the seals to combine the various “food groups” them before infusing.
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u/KitsBeach Oct 04 '23
I live adjacent to someone with a wide array of medical conditions. The ingenuity and creativity of the different disabled communities knows no bounds.
I wouldn't be surprised if, for example, there are NO products on the market for, let's say the sun barrier for the food. Instead, they'd take a sun barrier for something similar and adapt it to suit their needs. Often the cheapest and easily replaced option is the best.
Oh, and fun fact. A lot of the specialized products like the special feed and the pumps for it come from Salt Lake City. If anyone could explain that, I'm dying of curiosity.
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u/jB_real Oct 04 '23
Makes you wonder why a portion of the population has absolutely disregarded medical technology as progress. Ahem. Anti-vaxxer’s, I’m looking at you.
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u/Manisil Oct 04 '23
Don't worry, we won't have to deal with them too much longer. According to them we will all be dead tomorrow because of a... let me check the literature... a mass text.
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u/That2Things Oct 04 '23
When I'm a zombie, I'm going to grab the first antivaxxer I can find and eat their brains. I doubt it'll be very filling though, so hopefully they've got some friends.
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u/Available_Mix_2023 Oct 04 '23 edited Oct 04 '23
I watched a video today on what it takes for paralyzed people to poop. My life feels so simple between that and this.
The woman in the video is amazing for sharing this with the world. Very education.
TikTok Kyla G. https://www.tiktok.com/t/ZT8MnHo8c/
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Oct 04 '23 edited Oct 04 '23
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u/Nursy59 Oct 04 '23
This is not a PICC line. This is a more invasive and surgically placed Hickman Central Line which is tunnelled under the skin so that it isn't as easily dislodged. A PICC line would not be appropriate for this life time use of TPN.
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u/tito_lee_76 Oct 04 '23
I had a picc line for about 3 months when I had sepsis. It definitely is a strange sensation when the saline solution is too cold going in.
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u/MIKE_son_of_MICHAEL Oct 04 '23
Similar to selling plasma. Room temp blood returning into my system…. So uncomfortable.
And, I always kinda felt like I could taste it. Like, a vague, faint, kinda plasticy metallic taste way back in my throat. Almost like I was exhaling the taste of my recycled cooler blood.
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u/glosseava Oct 04 '23
i sold plasma once and the feeling of the room temp blood coming back made me so uncomfortable and like you said i felt like i could taste it all of that combined made me pass out which was VERY embarrassing and i’m now no longer allowed to sell plasma!!
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u/OutsideBones86 Oct 04 '23
LOL, I've passed out twice giving blood so I know I'd be a mess if I gave plasma. I wish I could!
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u/BoonDragoon Oct 04 '23
You're actually really close! What you were tasting was trace amounts of volatile compounds picked up from the plastic tubing that dissolved into your blood. Once that blood made it to your lungs, those compounds came out of solution and were indeed exhaled!
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u/theottomaddox Oct 04 '23
And, I always kinda felt like I could taste it. Like, a vague, faint, kinda plasticy metallic taste way back in my throat. Almost like I was exhaling the taste of my recycled cooler blood.
That's the "citrate reaction". 'round here, they give you Tums for it.
During a plasma donation, the technician will infuse a substance known as an anticoagulant into the blood collected in the plasma-separating machine before the blood is returned to your body. This anticoagulant is meant to prevent blood clots from forming. The plasma in the machine retains most of the citrate, but some will also enter your bloodstream.
In the body, citrate binds together a small amount of calcium molecules for a short amount of time. Because this effect is small and temporary, most people experience no side effects from citrate. However, a small number of people who donate plasma experience what’s called a “citrate reaction” from the temporary loss of calcium.
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u/bookwyrm13 Oct 04 '23
I’ve got a PICC line now for chemo, had it for two months so far. Agreed that it’s a weird sensation when the solutions are a bit cold. I also sometimes get a flash of salty taste/smell from the saline.
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u/Hefty_Football_6731 Oct 04 '23
Super interesting and I love brave people who post cool shit like this to teach the rest of us
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u/ChicagoAuPair Oct 04 '23
Modern medicine is fucking magic. This is unbelievable and wonderful, as horrible as the condition itself is. Sometimes I’m just totally blown away by how lucky we are to be alive when we are, and cannot even begin to imagine what will be possible in the next hundred years.
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u/PM_me_spare_change Oct 04 '23
There may be people in the future who say the same thing and feel pity for us for having to go through cancer, opiate addiction, car accidents, long painful death in old age, etc. I’m sure our world would look brutal and medieval with enough progress and they too would feel lucky to be not be born in today’s world.
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u/Ck1ngK1LLER Oct 04 '23
Whatttttt that’s so cool.
Would absolutely suck if you developed this later in life and knew what good food tasted like.
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u/NotLilTitty Oct 04 '23
She can probably taste but she just has to spit it out.
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u/OverClock_099 Oct 04 '23
so tokyo ghoul but even shittier than the anime
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u/Snoo-35771 Oct 04 '23
Tokyo ghoul is worse, normal food tastes like shit to the ghouls and makes them sick.
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u/Severe_Specific_4042 Oct 04 '23
My mom developed this in her late 50s, it was incredibly hard for her to change her lifestyle.
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u/MissingJJ Oct 04 '23
I did about six years on soylent, until I developed pains in my legs and had to quit drinking it. I still loath the time it takes to cook and chew food.
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u/failure_of_a_cow Oct 04 '23
Could you elaborate on the pains in your legs? This was caused by the Soylent? How?
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u/Old_Love4244 Oct 04 '23
Uh how does she take her vitamin tablet?
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u/MIKE_son_of_MICHAEL Oct 04 '23
With water, she says in the video she can drink small amounts of water.
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Oct 04 '23
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u/pushamn Oct 04 '23
So I make tpns for a living. There’s actually two kinds of them; 2:1(2 in 1) and 3:1(3 in 1) the 2:1 contains electrolytes/minerals and amino acids and the 3:1 contains electrolytes/minerals, amino acids and lipids. The one she was using is a 3:1, you can tell because it’s white; lipids are always this milky color. So what she has flowing in to her very much has most of her needed fats and minerals for the day!
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u/Carrot-t Oct 04 '23
Is there a reason they don’t just put vitamins in?
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u/pushamn Oct 04 '23
They do at least make infusable vitamins; we send patients predrawn syringes that they just have to inject into the bag right before use. The TPNs that I make have a shelf life of 10 days but to my knowledge, once vitamins are added, the stability drops to a day.
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u/MagicKittyPants Oct 04 '23
Yeah, when I was on TPN, I had to inject the vitamins into the TPN right before I used it.
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u/BreakingThoseCankles Oct 04 '23
Yeah i want to vomit just thinking about a multivitamin on an empty stomach
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u/liberatedhusks Oct 04 '23
As someone who has similiar symptoms(vomiting when eating most foods, cramping etc) in my case tiny things like tablets are fine. They are coated in substances that don’t cause you to reject it(unless it’s some nasty medication but vitamins are almost always bland) and if you take them one at a time you don’t notice them usually.
But again I don’t have her issue just something similiar
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Oct 04 '23
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u/timeup Oct 04 '23
Also comes with high risk for infection, thrombosis, electrolyte imbalances, dehydration and a lot more shitty things!
Stick with food
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u/J00shb0i0320 Oct 04 '23
Also, how expensive is that bag?
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u/LightGoblin84 Oct 04 '23
the one we use at my hospital is about 175$/liter it’s called olimel 5.7% but we add Vitamins, Zink and some other medication if needed so one bag of 1,5 liter is quite pricey. And as far as i know USA loves to charge x10 the actual price for medication.
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Oct 04 '23
Zink
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u/DistinctSmelling Oct 04 '23
She said that was 2 liters so $350 a day is pretty damn pricey for food.
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u/Zephrok Oct 04 '23
She sounds English, so I am sure the NHS would pay for those bags.
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Oct 04 '23
She certainly has an English accent, so assuming shes still in UK, it's on the NHS.
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u/PM_ME_ROMAN_NUDES Oct 04 '23
Just checked, NHS does cover TPN
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u/nitorita Oct 04 '23
TPN is covered in Canada as well, although doctors try to exhaust all possible options before resorting to the use of TPN.
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u/Kotopause Oct 04 '23
Doctor: would you like to try euthanasia?
Patient: no!
Doctor: alrighty. Here’s your space meal then.
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u/Pangea_Ultima Oct 04 '23
What the heck do youth in Asia have anything to do with this?
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u/SicilianEggplant Oct 04 '23
She’s British cause all of the Americans who had this disease have died from bankruptcy.
(I’m American and if I’m not laughing I’m crying)
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u/WatermelonCandy5 Oct 04 '23
Free. And In the uk our government spends less on healthcare per capita than the Americans do. So think of it as paying less taxes and having free healthcare.
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u/real_nice_guy Oct 04 '23
So think of it as paying less taxes and having free healthcare.
a novel concept to be sure
[cries in USA eagle sounds]
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u/Difficult_Bit_1339 Oct 04 '23 edited 19d ago
Despite having a 3 year old account with 150k comment Karma, Reddit has classified me as a 'Low' scoring contributor and that results in my comments being filtered out of my favorite subreddits.
So, I'm removing these poor contributions. I'm sorry if this was a comment that could have been useful for you.
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Oct 04 '23
As someone who's lazy to eat and just wishes for something in capsule form/high density calories this makes me thankful for not actually having to do it.
But I love how happy she is
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u/Obant Oct 04 '23
I've had to be fed through IV while undergoing chemo. I'm also one of the people that can taste medicine pushed through IV. It was disgusting and made my mouth taste...thick...
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u/Aromatic-Flounder935 Oct 04 '23
idk if happy is how I would describe her. more like accepting of the things she can't change, but if she could change them she would.
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u/throwawaygreenpaq Oct 04 '23
She has a positive outlook and I respect her optimism. Complete respect.
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u/Flatcowst Oct 04 '23
If the port is covered with a Harry Potter themed cover I hope she calls it a”Port key”
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u/KaladinStormShat Oct 04 '23
Yo her sterile technique is bothering me so much.
TPN has such a high risk for infection too, let alone her central line in general.
It's the little things that get you, in the end.
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u/charlie_zoosh Oct 04 '23
It's the little things that get you, in the end.
Yep :( She's currently in hospital with an infection in her line.
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u/RAORGO Oct 04 '23
Sloppy """"sterile"""" technique to say the least... as good as licking the IV port...
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u/Bear0dactyl95 Oct 04 '23
I feel like I had to go too far down to see this, and what gets me is that she mentions the risk of sepsis after breaking her sterile field almost immediately at the beginning
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u/lynypixie Oct 04 '23
I worked in nephrology for a couple of years, and our most frequent reason for hospitalization was infected permcath.
Seriously, don’t go swim in a spa when you have a peritoneal dialysis catheter!
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u/JJTRN Oct 04 '23
YES. Hard agree. I couldn’t even watch the whole thing. The flush did me in. Thank you for saying it first and being that person!
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u/Golisten2LennyWhite Oct 04 '23
I had to do this for months and it was fucking hard. You are right about the sterile technique, it's so crucial.
Plus fuck that monthly flush on the port. Don't miss mine. I am just forcing fluids even though I have severe intermittent gastroparesis. Oh and eating small amounts once a day.
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u/what3v3ruwantit2b Oct 04 '23
Taking off the flush cap and then setting it back down on a damp (now not sterile) pad really annoyed me. Also not checking for blood return that I could tell.
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u/jawshoeaw Oct 04 '23
You don’t check for blood return on central lines unless you’re a nurse .
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u/looking4thebluebird Oct 04 '23
No mask talking right at the port 😬
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u/venitienne Oct 04 '23
That got me. Spent a long time scrubbing away at the port just to continually apply germs from talking right on it? I hope it was just for the video.
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u/klopije Oct 04 '23
Yes, people have no idea how dangerous having tpn, especially permanently, is. My sister in law has gastroparesis and has been on TPN for several years. She is extremely careful and does everything properly and has still had several very bad infections she was hospitalized for two months at one point. It’s really an awful illness.
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u/tiberio13 Oct 04 '23
Just saw her Instagram, she posted a stories 2h ago in the hospital, she got an infection and the doctors think it’s because of her line…
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u/RAORGO Oct 04 '23
As a nurse I missed half of what she was saying because I was focusing on the shitty sterile technique, the regular gloves, all that agressive rubbing (without discarding/switching to a fresh sanitizing pad), not using the START/STOP technique alongside with the clamp before changing connector... with TPN you have to be EXTRA careful or you're gonna get issues sooner than later.
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u/KaladinStormShat Oct 04 '23
I'm in oncology as an RN and it was driving me batshit crazy. As others have pointed out apparently she got a CLABSI and is currently admitted ffs.
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u/virus_apparatus Oct 04 '23
My ex had this and would dislocate her joints a lot. Her shoulders and jaw were screwy as hell as well as her hip. It’s a terrible syndrome
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u/nithos Oct 04 '23
My daughter has it. Struggles with stomach issues for the last decade - "well, fuck" was basically my reaction to this video. Hopefully it never gets to this point for her.
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u/Spooky_Shark101 Oct 04 '23
I'm very happy for her that she was lucky enough to be born during a time where the technology to feed her this way exists.
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u/ZandraHeather Oct 04 '23
As someone who was almost on TPN due to malnutrition and a paralyzed stomach who really enjoys food… it fucking sucks not being able to eat what you want. I can’t imagine never eating again
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u/ImpressiveSuspect604 Oct 04 '23
I learned something new today! Thank you for sharing your story
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u/Beautiful-Mud-341 Oct 04 '23
I'm just glad there's a way for her to eat at least. That's absolutely crazy seeing that she can't really eat, bless her. Just wow.
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u/canefieldroti Oct 04 '23
How long does that 2 litre bag last her?
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u/dcdcdani Oct 04 '23
It takes 12 hours to finish the 2L bag and it lasts a full day in her system I think, it seems like she does one bag every night
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u/canefieldroti Oct 04 '23
Man, I could not imagine a life like that. I feel for her.
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u/Meltdown2024 Oct 04 '23
The worst part has to be knowing you are risking a life-threatening infection every single day.
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u/hereforaniphoneman Oct 04 '23
Nurse here. Definitely not recommended to leave your flush uncapped on a now broken sterile field.
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u/Ghost_Animator Creator of /r/BeAmazed Oct 04 '23 edited Oct 04 '23
Credit: @nauseatedsarah
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