Fxw12314211
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Fxw12314211, January 21,  2020  6:28pm EST

Newly Diagnosed

 I am 39 year old male Diagnosed with idiopathic dialated cardiomyopathy in Nov, ef was 15-20, now at 28 after enestro and cavdidol  plus low salt diet hoping to continue to improve. Need to decide on ICD implementation any advice?

  • eddiepullin
    eddiepullin, January 21,  2020  6:32pm EST

    Hi, I have an ICD, I’m glad I do,?i feel as if it’s a safe haven. This is just my opinion. I feel as if it’s better to have it then not. I hope this helps. Does Entresto make you tired? Thanks, Eddie

  • Fxw12314211
    Fxw12314211, January 21,  2020  6:40pm EST

    Eddie thank you I feel the same. I have external life vest on at moment. Have pick from wired ICD or under the skin Yes entresto makes me tired and sometimes dizzy. No other side affects at my dosage. 

  • eddiepullin
    eddiepullin, January 21,  2020  6:46pm EST

    Thank you! I just started Entresto about 2 months ago, being tired is something I don’t care for, but it helps. 

  • 1959LADY
    1959LADY, January 22,  2020  12:20am EST

    Hi. Same diagnosis EF of 30. Suggested the ICD vest and I declined. I had no previous heart problems or any heart disease. EF increased to 40 after 4 months on highest dose of meds.  At that point Dr said ICD no longer needed.  Hoping that EF will continue to go up. Good luck to you with whatever decision you make. 

  • eddiepullin
    eddiepullin, January 22,  2020  8:00am EST

    Hi 1959 Lady, I’m assuming we are around the same age. I’m 59. Do all the meds make you tired! Entresto, plavix, aldactone, metropol, aspirin, atorvastatin, an bumetanide. This is what I take along with Paxil and Xanax for anxiety and depression. I have no energy 

  • 1959LADY
    1959LADY, January 22,  2020  8:33am EST

    Eddie

    I take Entresto, Carvedilol, Spironolactone and a baby aspirin.  I wouldn't say I'm too tired. I work full time and function normally. Maybe a little more tired than years ago but I'm older too.  It doesn't affect my life if that's what you mean.  

  • eddiepullin
    eddiepullin, January 22,  2020  8:49am EST

    Hi Lady, well I’m not sure if it’s all the meds or my actual heart condition. CHF, I worked in a warehouse most of my life and had to leave May 2019. I received disability on my 1st try. But I want to work. I understand no more heavy lifting. But some days all I want to do is sleep. 

  • Jesedb
    Jesedb, January 28,  2020  10:38am EST

    I've had an icd for 7 years. Last Saturday it saved my life. It went off twice which was scary but I would do it again and will replace it when the battery dies in 2 years as it is truly a life insurance. The hospital said I would have been dead without it. My ef is 25 and I've had heart failure for 20 years now since my 2 silent heart attacks in 1999. Surgery wasnt an option so I survive by meds and icd. 

  • eddiepullin
    eddiepullin, January 28,  2020  10:52am EST

    Jesedb, I agree with ICD. May I ask what meds you are on? I had my initial heart attack 4 years ago. Things keep changing since then, added the ICD, a year after, a year after that a new ICD with a pacemaker, this past November 3 additional stents. I worked 3.5 years after the initial heart attack, I had to leave in May of last year, my EF which was just done last week shows 25. I’ll be 60 in a couple weeks. I really want to go back to work, although it’s physical work in a warehouse. So I guess I’m asking you is how did you do it for 20 years? 

  • Jesedb
    Jesedb, January 29,  2020  10:44am EST

    When I was diagnosed I read up about chf and thought I would die in 5 yrs. Through meds, exercise and healthier eating it's been 20 yrs. I was able to see my 3 children graduate, get married and now have 9 grandchildren. I've been truly blessed. I will turn 65 super bowl Sunday. Originally they said it wasnt uncommon if I had a hospital visit once a year. Not in my case. They term me "well compensated" at least until I was recently hospitalized. My meds have changed a little since last weekend since a couple of them (digoxin and simvastatin) would interact w my new meds. Currently I am on amiodarone 3x day, 81 mg. Aspirin, carvedilol, lisinopril, rosuvastatin, and spironolactone. They will probably take away the spironolactone in a few weeks because I have no edema 

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