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Fuck ALS and doctors

E

elit3keraed

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Just need to vent but fuck doctors and fuck ALS man. My aunt went into the hospital like 2 months ago for muscle weakness. They told her she has some nerve issue and started doing some transfusion shit that was supposed to cure her. Basically something about her nerves losing some sort of protective “sheath” or some shit which was causing them damage and this transfusion was supposed to repair it or something.


After her 3rd transfusion and getting weaker and weaker cuz “it knocks you down before it starts to work” she got intubated because she couldn’t do anything and was put in ICU. Come to fucking find out what was actually wrong was that she has ALS (like her mom did) and the treatment sped up her condition. So what would have been 3-5 years of a slow decline turned into less than 6 months because she qualified for medical assisted death (I guess it’s only available when you have less than 6 months).

It’s tomorrow at 11am. She doesn’t want visitors and I honestly didn’t think this was going to happen so I had been putting off visiting her because

A. I was being lazy and justifying the last two weeks as “I have 2 straight weeks of work and I don’t have time”
B. Doctors swore she was “getting better and would be back home soon”

I lost my uncle (her husband) 2 years ago right before my birthday due to a freak accident (he was on rx brain meds and was feeling off after taking them. Went to lay down and guess he laid in a weird way that basically asphyxiated himself because the meds lowered his respiration and the angle his head was made it too hard to breathe). Now her.

I’m just angry and want to beat the shit out of the assholes who diagnosed her wrong and took the little time she SHOULD have had left away from her.

Hug your kids tight bros, call your parents, your aunts, your uncles. Fuck just tell the people you give a shit about that you give a shit about them because you never fucking know right?
 
My grandma died from ALS. They gave her 2 years, she lived 10. The last 4 years she was bedridden and we actually allowed her to pull the plug on her oxygen tank eventually. She could have lived for years more but it was torture. The poor thing just laid there and could only blink her eyes. We would use an alphabet chart and go through each letter and she would blink to choose a letter and spell words. That's how we communicated. It was horrible.

She told me she would wait for me to graduate college and she did. She died 2 weeks after I got my first degree.

So.sad. such an awful disease...turns out creatine is actually very helpful as are steroids and high. .of course they wouldnt give her any. Anything that prevents muscle degeneration assists ALS.
 
GYMnTONIC said:
My grandma died from ALS. They gave her 2 years, she lived 10. The last 4 years she was bedridden and we actually allowed her to pull the plug on her oxygen tank eventually. She could have lived for years more but it was torture. The poor thing just laid there and could only blink her eyes. We would use an alphabet chart and go through each letter and she would blink to choose a letter and spell words. That's how we communicated. It was horrible.

She told me she would wait for me to graduate college and she did. She died 2 weeks after I got my first degree.

So.sad. such an awful disease...turns out creatine is actually very helpful as are steroids and high. .of course they wouldnt give her any. Anything that prevents muscle degeneration assists ALS.
Click to expand...
I’m so sorry man. My aunt was at the “can move her hand just enough to still write” but they had to load her with so many tubes and needles that she can’t even use her arms now. She just lays there.


Such a fucked up situation. Had she NOT been giving whatever transfusion she was given she’d still be talking and moving on her own at least for now.

I’m not happy she’s leaving but I’m happy she’s going out on her terms. Cuz I can’t understand what she’s experiencing but I can understand not wanting to suffer needlessly
 
How did they not get that right? Family history and all.

Bad things happen to good ppl.

Sorry bro
 
Augustine5I said:
How did they not get that right? Family history and all.

Bad things happen to good ppl.

Sorry bro
Click to expand...
So I actually just found out that she had been going to a physical therapist for her muscle weakness and the physical therapist told her “ I know what’s wrong with you. You have this weird rare neurological thing that’s super rare” and then claimed they knew because 5 of their patients allegedly had the same super rare neurological condition.

So my aunt went to Hoag and said hey my physical therapist said that I have this medical condition and the doctor just said OK well your symptoms check out so let’s put you on this prescription transfusion shit.

After she continued to get worse and wound up in ICU at a different facility the doctors said “that’s odd that she’s not getting better” and actually did a work up rather than just take whatever some fucktard PT said as gospel.


Moment her sister mentioned the ALS the new doctor basically said “well that’s most likely it”
 

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