Rmp829
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Rmp829, July 3,  2019  2:09am EST

Heart Failure 54y/o female EF 20-25% LifeVest

Well, I’ve been reading posts off and on for about a week and I finally figured out how to post my own.  I was diagnosed with Congestive Heart Failure April 1, 2019. I still can’t believe it. My mom was in the hospital with a broken ankle (in 3 places). She also has chf but it’s end stage so they gave her a choice in 2011 to either go into hospice or have and lvad implanted. She chose the latter and is doing very well. However while coming to visit her in the hospital I kept getting short of breath before I could even reach the elevator. Long story short I ended up in the ER of the same hospital. They admitted me, ran lots of tests and after the echo they gave me the bad news. “It’s heart failure”. I asked if he was absolutely certain. But of course he said yes. I guess at this point I’m just sharing my story because I don’t know what else to do. I have so much to say but I don’t want to bore you. But if anyone has tips on dealing with this darn LifeVest I sure would appreciate it!  

Thanks for listening and I will update you guys if there is any interest. 

  • Rmp829
    Rmp829, September 2,  2019  9:27pm EST

    Dear 1959Lady,

    I’m still wearing the vest for now. I still hate it but I’m trying to do everything the docs say until my next echo. I have very good docs that I teust. I take my meds, wear the vest, eat low sodium almost everyday. 

    I am tired and sometimes exhausted all the time. I have not worked since April after I was released from the hospital with the diagnosis & mostly because of my back condition. I’m not scared at all about the heart failure. I think I’m still in denial even tho this vest is a constant reminder but I don’t get swollen ankles or anything. Just short of breath soung stairs and walking a long time and my lega feel extra heavy. Thighs hurt sometimes. 

    I do get a strange burning pulling in my chest but they keep saying its only acid reflux. They increased my Pantoprazole. 

    My echo is September 10th. I’ll update you guys after. Pleaae pray!

     

  • Rmp829
    Rmp829, September 20,  2019  8:14am EST

    I think I had a virus and maybe the meds made it worse. I had Diarrhea for several days with shortness of breath and chest discomfort (burning) and chills. Thank God I’m feeling much better now. Still a little dizzy but that’s because I had to take a Norco for my back pain  

    I had my 3rd Echo the other day. My Ejection Fraction has increased from 25-30% to 35-40%.  My cardiologist is happy with the improvement but wants me to be at least at 50% before I can get rid of the Lifevest and not need an icd. 

    Good news for me is he is clearing me to have my back surgery.   I will have a cardiac mri in 3 months and a follow up visit to see him to see If I have improved enough or not. 

    Hope everyone is doing better!  Keep us posted. 

  • 1959LADY
    1959LADY, September 20,  2019  9:25am EST

    FANTASTIC!  The improvement in the EF is amazing! Can I ask what meds and how long you were on all to see this improvement?  I tried to look back thru  the feed to see if you mentioned the meds or the doses so you don’t have to repeat but I didn’t see it. Just saw you were diagnosed in April.  

    Its great that you’re cleared for surgery too.  That should alleviate some of the issues. 

    Best of luck.  

    Kathy

  • Rmp829
    Rmp829, September 20,  2019  10:24am EST

    Thanks so much Kathy!  I was only slightly happy with the incremental improvement but you were so excited about it now I’m very pleased and grateful. And absolutely grateful that I can now get the back surgery. This pain every day is worse than the heart failure. 

    I am on a daily baby aspirin, lasix 20mg daily, spironolactone 25mg? I think, metoprolol 75mg daily, Entresto 97/49(something like that) twice daily. And then other meds not related to the heart failure.  I stick to the less than 2000 mg a day of sodium almost every day and no alcohol  

    I’m looking forward to getting back to normal or as close as I can get for as long as I can. 

    I wish the best for you as well. 

    Gina

  • 1959LADY
    1959LADY, September 20,  2019  11:19am EST

    I am also on the 25mg Spironolactone, baby aspirin and the highest dose of Entresto.  I take 25mg of Coreg 2x a day  instead of the Metropolol.  

    I have never had a fluid issue. I haven’t been great about the sodium but I have cut back on salting things and we are eating more at home instead of restaurants so I’m sure it’s been reduced in my diet.  

    Repeat Echo is 10/21, that’s 4 months after being titrated up to the doses I’m on now   Praying that the EF is at least 40. As mentioned I have no real symptoms.  I exercise and don’t have any breathing issues.  

     

  • Rmp829
    Rmp829, February 4,  2020  12:32am EST

    Hello all, well I had my back surgery but unfortunately I had complications and ended up staying in the hospital for 2 months!  Long story.  But the spinal fusion laminectomy worked great. No more back pain or pain in my legs or hips! I'm still wearing the Lifevest. Still hate it but I'm used to it now. I had a cardiac mri last week. I'll get the results this Thursday (3more days). Then I will know if I can get rid of the lifevest and/or no need for an icd as well   Fingers crossed and praying. I feel good but get short of breath and tired lately. I also have terrible pain in my left shoulder. I'll get it looked at one day soon but for now I just need to know my new ef and what the plan is. I'll update you if I can find this page again. 
     

    Gina

  • 1959LADY
    1959LADY, February 4,  2020  12:54am EST

    Gina, 

    Great to hear from you!  Glad you're out of pain.  Sounds like it was a major ordeal! Keep us informed regarding your EF. Hopefully you can ditch the vest! 
    I had a repeat ECHO in October.  EF was up to about  40. Meds are working. Dr said to come back in 6 months and repeat ECHO in a year.  He's optimistic that the EF will continue to go up.  
    I hope you are continuing to feel better.

    Kathy

  • Rmp829
    Rmp829, February 4,  2020  8:37am EST

    Thanks Kathy,

    How was your echo in October? I'm not sure how my cardiac mri will be because while I was in the hospital they dropped my Entresto and Metoprolol down to the lowest dose. Now chf clinic is gradually getting me back up to the highest doses. And I was eating regular food in the hospital not a cardiac diet ( someone dropped the ball...I tried to tell them but they never changed it ) 🤷🏽‍♀️ Since I've been home (December 14) I've been eating too much fast food. Like you normally very few symptoms but lately I get short of breath going up n down stairs at home. Never any swollen ankles. How are your symptoms? Have you been sticking to the low sodium diet?

    Gina
     

  • 1959LADY
    1959LADY, February 4,  2020  9:06am EST

    Gina, 

    My EF raises to about 40. Dr said no need for ICD. I really have no symptoms. I do not have to follow a low  sodium diet. I just "watch it". I'm not real strict. Dr is optimistic that EF will go higher. 
    Hopefully meds are doing the trick for you too! 
     

    Kathy

  • Rmp829
    Rmp829, February 4,  2020  9:20am EST

    Kathy,

    That's good news!  I hope your EF continues to increase. I'll let you know how mine is when I find out Thursday.  So far I think that Entresto is a wonderful drug for heart failure. I know a guy who's ef went from 8% to 55% in a year!  It's so new tho no telling what the long term affects might be. 
     

    Gina

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