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AmyB14626, August 2,  2020  2:42pm EST

Scared of my future

Hi! My name is Amy and I've been living with DCM for 11 years. Although I have been blessed with slow progression of my condition, allowing me to live life as full as possible, now my condition is worsening at a rate that is terrifying! My doctor's are now talking about an LVAD and getting me on the transplant list. I've been recently suffering with AFib. When an episode hits, it literally lays me out and it happens several times a day. Now I find myself house bound because I'm too frightened to go out and experience an episode in public. I am also seeing that my potential to become a "burden" is possible. LVADs, transplant, getting worse, trips to the ER and hospital stays - it's all becoming very overwhelming! If anyone out there has experienced all of this and come out on the other side - I would love to hear from you!

3 Replies
  • AHAASAKatie
    AHAASAKatie, August 3,  2020  9:11am EST

    You are definitely dealing with a lot. We do have patients who have LVADS & transplants. We also have an entire section for AFIB patients as well. I can share the information we have regarding LVADS and Cardiomyopathy and I look forward to reading the words of support that are headed your way from other members. Please know what you are not alone, we are here for you. Best Katie

  • eddiepullin
    eddiepullin, August 10,  2020  10:08am EST

    Hi Amy, 

    I suffered a major heart attack 4.5 years ago. I ignored the 2 weeks worth of warning signs and let it go. A year after the attack I received a ICD. A year after that I received another ICD with a pacemaker. 
    I continued to work for 4 years after all of this, I worked in a warehouse, not realizing the heavy lifting was doing more damage. 
    last November, I was going in for a routine device check, they admitted me and added 2 more stents. 
    since then we've been playing different heart meds.

    early July of this year I became dizzy, my BP was in the 70's over 40's. 
    I just did a stress test last week, Thursday afternoon. The Dr called me Friday. He's thinking I may have another blockage in the front of my heart. 
    I have severe scarring from the original heart attack. 
    so I follow up this Wednesday with the cardiologist who saved my life to see if another cath will be required. 

    I understand your fears. I'm praying I don't need more stents. I keep exercising, walking, but I try to walk 30 minutes daily when possible, good days I walk more. 

    keep the faith, and don't give up. We, together can overcome this disease. Don't let the fear stop you from trying. 

    good luck and know your not alone. 
    im praying for you. 


  • marshamd59
    marshamd59, August 17,  2020  10:16am EST

    Dear Amy,

    It's super scary to be faced with the possibilities of LVAD and heart transplant. Although in all my reading survivor stories and discussions with doctors the technologies these days are amazing. People who have had transplants say they feel like a new person and live long lives. That being said, again I know it's a super scary prospect. I'm on a similar path as you are and I'm currently on the transplant list. I have had cardiomyopathy since 2006. My symptoms worsened in 2014 and since then I've had numerous procedures and trips to ER and spent months on the couch suffering with CHF. Miraculously, each time my doctors have somehow been able to get me going again. I've had a valve repaired, received a pace maker and defibrillator, two ablation and I've been cardioverted more times than I can count for arythmias. What have they been doing for your arythmia issues? Have you had an ablation? If not, I would definitely ask your doctor if it might be an option. I know they arythmia issues are hard to deal with. They put me down also. My doctors have been great to work each issue as it pops up and somehow kept me going. Anyway dear lady, it is scary, but there is hope! Hang on to that hope. We are blessed to live in a time when much can be done to give us a long, full life. I'm so glad you're here and sharing your story and fears. It's good to have the support of others in similar situations and gain hope from their stories. Let me know how you are doing when you get a chance. 


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