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What Is The Hardest Part Of Living With Heart Disease?
A MyHeartDiseaseTeam Member asked a question 💭
posted October 25, 2022
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A MyHeartDiseaseTeam Member

Went from normal heart to acute congestive heart failure in April, with arrhythmia, irregular heartbeats - Something triggered it - I was active, just finished building shed, athletic, no drink, no smoking, no drugs - Now at probably stage 3 with shortness of breath and trouble sleeping more than 5 to 6 hours, then have to get up because of trouble breathing - Taking diuretics, furosemide, but have to be careful taking diuretic because have stage 3 kidney failure - So take as needed - Doctor prescribed a bunch of other medications, but could not tolerate them, made me feel sicker, so stopped - Hardest part of living with this is the shortness of breath, lack of energy, getting tired easy, and trouble sleeping - Doctor recommends ICD implant for the arrhythmia, but I have not decided yet - So, made lifestyle changes, diet limiting salt and sugar, moderate exercise walking, biking, aerobic exercise - swimming tough because of shortness of breath and have to hold breath most times when getting mouthful of water every few seconds - the exercise helps, try about 2 hours a day, and feel much better than being inactive, sitting around, which I think makes it worse - after exercising feel good, but a few hours latter, while sitting in chair watching tv, I just nod off, fall asleep, weird, that never use to happen - tests proved my chf was not caused by coronary artery disease, mri revealed previous myocarditis, maybe caused by viral infection, which led to cardiomyopathy, then chf and arrhythmia (My theory, which I cannot prove, is the covid19 vaccine antibodies is causing my immune system to attack healthy cells by producing auto antibodies that can attack your body's organs and tissues over time, including your heart) - in 2017 my EF=55%, now it 25% - As I understand it, cardiologist cannot fix chf and arrhythmia caused by chf - not like resetting broken bone - they can treat the symptoms with medications, but cannot fix, and most times they do not even know what caused it - staying optimistic, mental health, also important in dealing with this - will fight it, will not quit, even if losing battle -, will go down swinging, instead of looking at a called strike 3

posted October 26, 2022
A MyHeartDiseaseTeam Member

I don't really think of it yes I know there's limitations but I work building dump trucks 40 hrs a week
Bowl weekly on a league
And FISH every chance I get
With an EF of 16

posted February 1, 2023
A MyHeartDiseaseTeam Member

I have had heart disease since2004. I have 4 stints. But the last one didn't work and caused me complications.
I also have a hard time falling asleep and also sleeping and getting a restful sleep.i found that I cannot handle stress and that is probably a reason for a
Lot of my sleepless nights.
I went to a cardiologist clinic and say a renowned cardiologist. She asked me a few casual questions then asked the pharmacologist what he would suggest for meds. I left the office with 6 new prescriptions. These pills all have an after effect which are sometimes worse then what you are going through.
I was taking lipator, and I took it for about 2years. My legs would swell I could hardly walk, my doctor had no answers for me.
My legs ached. So I went to a walk in clinic and the doctor suggested I discontinue taking the lipator for a couple of weeks and the swelling went down and my legs no longer hurt. I think you have to choose your poison.
I am learning that it is what it is.
I sleep when I can. I try not to stress out. An idea there is a sight on utube called the pause
And it helps to wind down before bedtime. It's relaxing.
Take the good that comes your way and enjoy your day. We truly are blessed to see another day. Be brave . Love you all

posted October 26, 2022
A MyHeartDiseaseTeam Member

I agree. I don't want to lose any more stamina. I hate that I need a nap during the day.

posted January 1, 2023
A MyHeartDiseaseTeam Member

The hardest part for me is not sleeping and being tired all the time I just want to sleep 😴😴😴💤

posted October 27, 2022

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