The medical system is broken
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- Опубліковано 21 жов 2024
- Hello, my name is Neil. I have liver cirrhosis and dysphasia to solids and liquids ( not able to swallow) also being tested for EDS soon a connective tissue disorder. This video is about dealing with the local medical system mainly ER departments when you have a chronic disorder or invisible disease. They need to do better with our medical system. Also I am trying to move to get proper medical help and support from close friends. If you would like to help you can at
gofund.me/7292...
Thank you in advance for any help. It means the world.
It isn't so much that they think the patient is lying, it's WORSE than that. Each medical establishment has a business model. If your symptoms don't fit with their business model they don't care about you. Example, my cardiologist doesn't care about my fatty liver or osteoporosis. My general practitioner didn't care about my blood pressure and anemia (turned out to be Crohn's). The ER doesn't treat chronic diseases and sends you back to your regular doc. It's all about HOW they make their money. If you r symptoms aren't part of their particular money making scheme, they aren't going to help you.
Hey Neil! Sorry to about the medical mess! You are so right, the medical system is broken! Wow! I wish somebody knew what the answer is! All the systems in this country are broken! Prayers going your way!🙏
It's been broken for the last 300 years. Wake up!
That’s when I feel very lucky to live in France 🇫🇷 I too have liver cirrhosis due to an immune illness I see a specialist every 3 months and if I don’t feel well I get to see him straight away I get an imr every six months a blood test every 2 months and if the specialist is away on holidays I’m always looked after very well at ae and it’s all completely free so I do feel very sorry for you prayers going your way be strong we listen to you and believe you take care
I would imagine it's not "free" do you guys have extreme taxes you pay? Not sure. Glad you have the help you need though.
@@timsolomon8352 it is completely free there’s a very small percentage taken from our salaries and we get free healthcare to everyone been diagnosed 3 years ago had hundreds of tests been hospitalised twice and never payed anything
I hear it’s like that in many countries
oh stop @@timsolomon8352
Of course it's not free. Everyone realizes it's tax payer funded. Some countries just believe a health citizen is worth it.
Thanks for the update date. Hope you feel better.
I had a bowel obstruction and because I have cirrhosis they didn’t want to put a tube down my nose. They were trying to tell me to wait it out. You have to complain and threaten to get things resolved. It’s hell. I go to a liver specialist hospital and they haven’t had a liver doctor there since last Oct.
It’s crazy the things we have to do to be heard
I completely understand. I have cirrhosis of the liver, but yes Doctors always treat you like your lying. I’ve had a UTI for 8 months and they do not know how to treat it. Very annoying
I’m so sorry
Thanks!
Thank you very much
😁 "GENTE ALLEGRA il CIEL l' AIUTA" ~ here in Italy 🇮🇹 means "HAPPY PEOPLE HEAVEN HELPS THEM"
I’m saved but he also says he gives you the tools to get through it.
Nothing helps cirrhosis but real strict diet . Doctors only help with bleeds and stuff. It’s up to us to stay alive . God bless ❤
The Lord is with You Neil, just ask!,✨and keep asking!
@@darrellmay4502 BS
Hope you feel better soon ❤❤
America needs socialised medicine.
who's gonna pay for it and all the freeloaders
@@jamble7k it works well here in Australia. 1.5% of our income tax ensures zero cost, emergency treatment or operation in EVERY hospital. You are getting screwed big time by private for profit medicine! Wake up!
@@Christian-qu9ml the price of freedom apparently, i'm not american
@@jamble7k o.k Javier Milei. 💩
🙂 I am so sorry you are going through so much pain.
Most ER Doctors tell people to see their regular Doctor afterwards!, they are too busy and don't want to be responsible any further!✨
😊. I forgot to put this in my original comment. I would love to hear/see you live. I am happy to have found you!❤
Thanks for sharing.
Wondering what's your history of exposure to sunlight and vitamin-D levels, if you can share it?
Hey, the liver is part of the digestive system. GI and Hepatology work well together. I don't mean to come off rude, so I hope I haven't overstepped. This is how I was diagnosed with liver disease.
I completely understand about hospitals. When ER clinical personnel look into problems and end up looking at all bloodwork and "diagnosing" from there makes since but you as the patient should be able to state what is the presenting problem and the long term issue. I also have swallowing problems unless it is warm/hot beverages. I have just started a rheumatologist. We will see!!
I was diagnosed with Gastroparesis from my GI. Ughhh... not a true diagnosis. I was being treated for it for 2 1/2 years. I finally had a stomach emptying test, and it was normal. Ughhh again.
Back to the ER - they don't communicate well when there are issues that don't particularly deal with the actual presenting problem.
The ER system for you (at least) just plain and simple: 😮
I am glad you are here for US in the "liver disease" community.😊
Btw: nurses ROCK!🎉
Yes they do. And thank you for your comment, the swallowing disorder they do know is neurological, it’s actually Esophageal motility disorder so basically the nerves are firing in the wrong order, drinking water won’t even activate the swallowing it just sits in there, or food will feel like it’s stuck and I’ll get spasms, or the food will come right back up. They hit it with 6 Botox injections to paralyze the muscles and it said no thanks 🤣 so I’m having a hard time getting more then one meal a day down, usually breakfast scrambled eggs lol. So I have to see a GI that specializes in rare stomach disorders. It’s fun. I try to keep a sense of humor about it. So I’ll probably get a feeding tube. And I’m sorry you are going through it also. Keep fighting and find something to laugh at, 😊 and I will do a live just not sure when. The last month has been very difficult on me. So I’m just trying to get some stuff situated.
@Redneckkenobi hey, me again. Thanks for answering me. I feel so special! I wonder if Gabapentin would work!?! I take it for severe neuropathy. At the moment I am being tested for SFN. Small fiber neuropathy which means it can happen anywhere. Laryngeal Sensory Neuropathy I was rested for due to me haveing some trouble swallowing (only happens when I first wake up with cold liquid). I do not have it. It may be a cross between a GI and neurological issue. Just a thought. You take care and I will too. Maybe we can both have something to laugh about today. I am excited about watching th Olympics in Paris thst start Friday. So thst will keep me busy. Hopefully you'll find something that'll distract you as well. Namaste🧘♀️
@@meahanley1112don’t feel special because i answered you lol im just a nerd making videos lol. I have to wait to get into the specialist for GI first, i was on that once, most my life I’ve had wide spread pain, so they had me try that and it didn’t do anything, it makes sense if it is EDS because it’s a connective tissue disorder that attacks the collagen and you are hyper mobile (double jointed) like my fingers can bend backwards, my knee caps lift up and move all around, it is common to get dismotility in your esophagus, causing hernias and a bunch of other stuff, so I check every box 🤷🏻 it’s hereditary, I believe it’s what my grandma had. Also your body doesn’t react to many medications, like if they give me morphine or any of them in the hospital it doesn’t work. And that sucks 😂😂 but I’m still laughing because I’m sure it’s all a a bad joke 🤣 and thank you for sharing. I think your comments are great and I like how you do research. That’s so important
🙏 🙏
😊
American health care system the worst in the world 😢
Coke and Pepsi cause Cirrhosis also . Sugars ! High iron as you know ,my cousin is waiting on a liver high iron heriary. ❤glad to hear from ya. Sounds like pancreas mine hurts in middle tummy.😢😢😢
It’s not, that’s fine. I’m not a normal situation. It’s because the internal bleeding caused inflammation, and I have 3 hernias. So between the fluid and inflammation and my intestines bouncing around it caused the pain.
Mine was all over including breathing. Like I said I bleed for 3 days
@@Redneckkenobiso sorry . Haney had bleeding yet.
@@valerielock2374 it stopped this morning, that’s why I looked out of it 🤣
EDS unfortunately affects so much in the body.
Yes it does
Believe it or not, I won't go to an ER unless I am dying on the spot!, it's sad,..💦💦💦
It sure is
Isn't that a reflux disease? not being able to swallow?
Hey, 1 more comment. I read and scrolled through these comments and I noticed all the disheartening and discouraging comments ts about the terrible mess the USA is in regarding health care. I fortunately haven't had many problems with the medical community. I live in Atlanta. I have so many doctors, too. I take someone with me, I make a list, read from the list, print a list for them, get answers and record them on my list, and do my best at researching about how EVERYTHING has to do with the liver!
I totally wish each of you the best. I am not sure what I am doing differently but it just really could be geographics. Liver detox vibes coming y'all's way!🎉
Hello again 😊 the video is aimed more twords ER settings, when I see the specialist it’s good. Problem is the specialist are 4 hours from me in St. Louis. And when you have to fight to get the ER doctor to even make a phone call that makes it difficult, disheartening infact. I had to go to 5 ERs when I lost the ability to eat anything and I didn’t eat for 5 days. When I finally got to St. Louis they had something figured out in 8 hours. There are 2 liver clinics in all of MO and many times I have been sent home for serious conditions. I was bleeding internally from my liver biopsy and I sat in the ER for 30 hours and there was a bed for me in St. Louis but the local hospitals transport wouldn’t take me. They kept my hemoglobin checked and gave me blood if I needed it. But if the bleed bacame more serious it would have been bad. But I’m still positive and I never give up 😊
@Redneckkenobi holy moly. I am so 😞. It is difficult to have a diagnosis, trying to navigate that, and dealing with the emotional rollercoaster it takes.🫠 However, the treatment you've received thus far just SUCKS! 🤬 I wish you the best, and I hate that you've been through so much. 🤗 Since I just found you I do not know much about you.🫣 I hope you have some support!❤️ Your attitude is fantastic.😁 I need to take a lesson from you. 🤔
@@meahanley1112no I’m on my own. Just me. Got a couple friends online and one locally I met about a month ago but that’s it. I’m hopeful though. My reptiles keep me going and hopes of being happy one day. So I push on. You are welcome to email me also if you have more questions or need to talk. It’s neil12020@yahoo.com Put liver friend in the subject line.
@Redneckkenobi thank you, Neil. I will take you up on that offer! 👍
Same here in Florida .went for bad gastritis , they just give ya Pepcid n send me home! Follow up with gi. Pills aren’t helping.❤
I’m sorry, you seem to be a fighter and I think that’s awesome. Thank you for always supporting me with you comments and likes 😊
@@Redneckkenobi❤
😊wish we could all be clos r to specialist 6hrs to jacksonville
Yeah definitely makes things difficult. Problem is I have no way to get there. I’ll drive for help but I can’t.
@@Redneckkenobimy live doc is 30 min away ,but for like transplants special is long way. All liver doc does is ultra sound every 6months blood work . We are high risk for liver cancer !
I dunno what State you're in but it's all over it's bad.
It's bad here in California.
Also, it's expensive when you're working and paying medical coverage and attending to see a doctor I'm going into debt just on medical bills.
Missouri
🙃
I’ve been following u for a long time I’d like to ask u a personal question that I’m growing through but do not want it public how could we speak
Neil12020@yahoo.com
My prayers are with you Neil, talk to Jesus daily!, He might even speak back to you!, but he is there to help all of us and He does!, He wants us to ask because it has to be your will to continue with your Life, not His choice!, peace and Love Bro. ✨🕊✨
@@darrellmay4502 he could talk to a wall and get the same result.
I think that you have esophagus reflux disease!
PS: The volume always seems a little low on your videos.
Thanks I’ll try ear buds next time. I don’t have anything other than my phone to do these on. But I appreciate you letting me know