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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@mjwillie31

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

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Let Your Doctor do that. Its hard to wade through the volumes of conspiracy theories. I will just say Young men were also dropping to the floor in sports with cardiomyopathy before covid.

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I know how scared and worried you are; I’ve been there. I was 45 years old when I was diagnosed with cardiomyopathy with a reduced ejection fraction. After a battery of tests it was determined to be viral induced and myocarditis was suspected. Often they can’t really know with certainty because viruses come and do the damage then go away although the deterioration continues. My EF was 28 at the time and the mortality rate was 67%. The protocol at the time was 1. Rest- eliminate as much as possible your stressors. 2. An angiotensin receptor antagonist, mine was Diovan (valsartan), Digoxin and a diuretic, hydrochlorothiazide. They no longer use digoxin; it’s been replaced with beta blockers.
So I took a couple months medical leave, changed my diet, lost weight and started yoga for stress management.
I am now 68 years old, so it’s been awhile that I’ve lived with this, against the odds, and I still have a reduced EF-40ish. I can tell you from my experience it is possible to live with an EF in the 40’s and even in the 30’s without an implant like CRT or IFD. I have resisted those and worked with a provider with med tweeks. I’ve been on Farxiga (I’m not diabetic) since 2022 following a mild case of Covid and some asthma surfacing which led to the determination that I could not tolerate beta blockers. They gave me some bad respiratory distress, shortness of breath - sometimes to the level of gasping for breath - and are known to pulmonary folks as the arch-enemy of lung function.
What I’m saying is perhaps your medications could be changed. I say trust your gut with meds. If you feel like a med is making you worse then speak up. Don’t be submissive about your health care. There could be problems that you don’t even know of that are causing interactions with meds.
I wish you the best in your Mayo journey and hope they help you find some balance. I’ll keep an eye on your thread and I sure hope I see some positive updates.

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What a wonderful, well-thought-out reply!

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