30s with heart failure. Scared dont know what the outcome will be

Posted by mjwillie31 @mjwillie31, Jul 28, 2023

Hi, how do you guys deal with the future and not knowing what could happen? are you scared to sleep at night?? ive been too many specialist, I just started with Mayo 2 months ago, hoping they can give me some answers . Im always hopeful , just some days are harder then others

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Welcome @mjwillie31, I can tell you that you are not alone. Sometimes it can be really difficult dealing with things that life throws at you. Add in a health concern and the problem just gets worse. I did find some tips that may be helpful if you haven't already seen them.

--- How can I stop worrying about my health? 5 expert tips: https://www.bhf.org.uk/informationsupport/heart-matters-magazine/wellbeing/stop-worrying-about-health

I can tell you as a Rochester Mayo Clinic patient that you are definitely in good hands with Mayo Clinic. I'm hoping you get some answers and a treatment that helps soon. While we wait for others to share some suggestions or experience, do you mind sharing a little more about your specific heart condition or symptoms?

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My ejection fraction is low. They don't know what to call my condition. They think it was mayocarditis? My triponen levels were almost 14,000. Definitely have scarring on my heart. I've been dealing with shortness of breath, nausea, vomiting and chest pain. This happened suddenly last year & I feel like it's getting worse. The pain is one thing. I've been crying everyday since last may. Shortness of breath came about 3 months after my chest pain originally started. The shortness of breath is pretty bad. I can't shower or wash dishes. I wake up at night because my shortness of breath. It's like I ran a marathon or really fast around a track and I'm trying too hard to catch my breath. I've been hearing good things about mayo! Hoping to get answers and hopefully go back to a normal living. I forgot what's It's like to sleep in and just live a normal daily life with out complications. It's only been a year. But its been a really bad year

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Hi @mjwillie31

I don't have any knowledge of heart failure, but has your doctor talked to you about going on oxygen given your shortness of breath? My mom had shortness of breath due to pulmonary fibrosis and was on oxygen the last few years of her life. I know it caused her a lot of anxiety. I'd suggest asking your doc about going on oxygen.

Can you share any additional info about your condition that might help others that have heart failure maybe help point you in the right direction?

Had your cardiologist said anything about getting a heart transplant? I'm not sure if your condition is bad enough to warrant that, but I'd ask anyway. I know that's a major step. Having something like this in your 30s is, I'm sure, pretty alarming. I wish you the best possible outcome.

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Wow, I feel so bad for you. It sounds like you are really in a tough spot. However, you are doing everything right by getting to the Mayo Clinic where you will get some of the best doctors in the world. I wish you all the best !

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@mjwillie31, You might find this discussion started by @gabrielm helpful:
--- Mysterious shortness of breath: What has helped you?: https://connect.mayoclinic.org/discussion/mysterious-shortness-of-breath/

Also, related to the question by @macj007, there is a newsfeed post that you might find helpful here:
--- Examining reports of heart inflammation in young people after second COVID-19 vaccine: https://connect.mayoclinic.org/blog/podcasts/newsfeed-post/poland-1/

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Unfortunately the main stream media and most doctors will not consider covid vaccine injury despite the fact that the data in the V-safe and Vaers websites proves that this is a real cause of myocarditis and subclinical myocarditis. Find a cardiologist who has an open mind so you can get the appropriate treatment .

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Yes. Took the covid vaccine! 1 cardiologist said they seen a spike in myocarditis with younger ppl. But this started a year and a half after I got the vaccine. And I didn't get the booster. They said it's highly unlikely. If it was the vaccine, the myocarditis should have happened a couple months after. But this was a year and a half after. But to be honest who knows.

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@mjwillie31

My ejection fraction is low. They don't know what to call my condition. They think it was mayocarditis? My triponen levels were almost 14,000. Definitely have scarring on my heart. I've been dealing with shortness of breath, nausea, vomiting and chest pain. This happened suddenly last year & I feel like it's getting worse. The pain is one thing. I've been crying everyday since last may. Shortness of breath came about 3 months after my chest pain originally started. The shortness of breath is pretty bad. I can't shower or wash dishes. I wake up at night because my shortness of breath. It's like I ran a marathon or really fast around a track and I'm trying too hard to catch my breath. I've been hearing good things about mayo! Hoping to get answers and hopefully go back to a normal living. I forgot what's It's like to sleep in and just live a normal daily life with out complications. It's only been a year. But its been a really bad year

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Just curious, did you get the Covid vaccine and or boosters? There has been many studies suggesting the myocarditis could be a result of the vaccine. This might be a place to start with treatment as so many others have had these type of vaccine injuries.

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No I don't have any social media. I'll try and check it out! Thank you!

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@macj007

Unfortunately the main stream media and most doctors will not consider covid vaccine injury despite the fact that the data in the V-safe and Vaers websites proves that this is a real cause of myocarditis and subclinical myocarditis. Find a cardiologist who has an open mind so you can get the appropriate treatment .

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macj007,

I think you should reconsider your nearly binary statements - do you really believe most doctors (or your placeholder for conspiracy theories regarding "mainstream media") will not consider COVID vaccine injury? My reading tells me the exact opposite - the entire scientific community is interested in better understanding potential relationships.

Here's the wiki on Dr McCullough ... it bears careful reading .. this quote is interesting - "During the COVID-19 pandemic, McCullough has promoted misinformation about COVID-19, its treatments, and mRNA vaccines.[4][5][6]

https://en.wikipedia.org/wiki/Peter_A._McCullough
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