Jul 3
Mamamojo , Posted on SUPPORT NETWORK Blog

Heart Failure Survivors: Help!

Hi Warriors,  
Perhaps you can give me some encouragement, words of advice from your experience. My name is Jeanne, I'm 78 years old, retired and had always enjoyed excellent health, my independence and an active outdoor lifestyle.  I've been battling congestive heart failure since 2013 when cardiologist found mitral valve damage, which I believe was result of massive bilateral pulmunary embolisms (blood clots in both lungs) that almost "knocked me off" in 2010 after a joint replacement.  Although my mitral valve was pretty messed up in 2013, my EF was 63 and angiogram was good so doc just kept close watch.  But 6 months later in 2014, I went into A-fib, the mitral valve pooped out.  I had open heart surgery, Miss Piggy's valve implanted, atrial ablation, one bypass as long as they were in there and a general tune-up.  Surgery and rehab went great and the docs even let me go on planned tour of Italy 3 months later.  My EF was 50ish.
     Big mistake!  Forced group marches across Florence were not my forte.  And I forgot to tell the tour company of my low salt dietary restriction.  My meds had also been reduced too soon.  Three months later, I was back in the hospital with heart failure again.  But I came home with a better perception of how to deal with my condition. It was my expectation that I'd get stronger, have less shortness of breath.  Nope.  In the following year, I developed PVCs (premature ventricle contractions) about 1/3 of the time and EF was 43.  My electrophysiologist performed a catheter ablation of my ventricle, which could only reach part of the faulty spots but PVCs were reduced to 8% of the time.  EF went to 45-50.
     Now 6 months later, the electro doc says my PVCs are somewhat increased (I never feel them so don't know when they happen) but good news is EF is 50.  I do get exercise in our condo pool at least 4 hours/week and my heart does fine with that.  But truthfully I am afraid to walk very far because when I get winded and need to stop, I think I'm damaging my heart.  I don't know if I'm having PVCs, heart failure or my heart rate is too low (runs 45-60 when not PVCs) from the meds.  I usually sleep good but lately I find myself waking up taking deep breaths and remedy that by moving to the recliner. 
     I'm driving myself nuts trying to be proactive, doing what's best for my heart, but I seem to be scaring myself more than anything.  I hear about people getting depressed after heart surgery and I think:  Depressed?  never....  Then I read some of your stories and I feel so humble to be anxious.  Any enlightenment, shared experience  is much appreciated regarding PVCs, shortness of breath walking or sleeping.
  • Kerstin Wiggins
    Kerstin Wiggins,
    Mamamojo, while I don't have words of advice, i do have extreme admiration for you and hope that this finds you healthy and feeling stronger. Have you found any good tips or words of wisdom from others in the community?
  • Karen3

    I have heart failure and I frequently get PVCs, too. I can feel them strongly. It's a little annoying but not really a problem. From what I've read, healthy people can get them, too.

    Your doctor can advise regarding exercise levels. My cardiologist told me if I don't break a sweat I'm not exercising hard enough, but I can't exercise hard enough to break a sweat. It's like hitting the accelerator and nothing happens.

    Personally my response is to not worry so much about the numbers and just try to enjoy myself. I tire more easily than I'd like, but I can walk around and do basic daily stuff. In a way my condition feels like a gift. Little things that used to bother me just don't matter anymore, and I feel more gratitude for small things. I don't mean to sound like a sappy greeting card, but I don't know how long I have -- a week? a year? twenty years? -- and I'm not going to ruin it by worrying about things I can't control. 

    We all manage the best we can. I'm just speaking for myself here. Maybe some day I'll go to Florence. I hear it's wonderful.

    I wish you well.

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