Mrstwink
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Mrstwink, January 28,  2021  2:30pm EST

EF not improving next is heart transplant

My husband (age 50) was diagnosed with heart failure in late August of 2020. He had an EF of 15%. No cause was determined for his condition. He was put on medication and a Milrinone IV at home. Now 5 months later his EF has not improved, his bloodwork is great and on his last echo everything except for his left ventricle looks good. He had a dual chamber ICD put in last week. He has been getting excellent care. His team of doctors told him today that the next step is LVAD then heart transplant. As of today My husband is ready to give up and is just waiting to die. I don't know what to do and he doesn't think there's anything we can do. Looking for suggestions or personal experience. 

4 Replies
  • tryingmybest
    tryingmybest, January 28,  2021  3:13pm EST

    Mrstwink - I am so sorry that your husband has hit this low. It can't be easy to hear someone you love talk/feel like that. He's so lucky to be getting such great care and the fact that there's options for him is excellent. Since his ICD was just put in, I think there's a chance this could really make him feel better and improve his quality of life while they see what to do next. I know the ICD made a big difference for my dad and other users on here. My father is at 11% EF and while it's been difficult to keep fluids off of him, he continues to try to live his life and I am sure he has many moments of wanting to give up just like your husband. It sure can limit what they are able to do. Just try to keep finding the positive in every day and remind him of those things. Sending my love to you and him and hoping for a long future for both of you!

  • AHAModerator
    AHAModerator, January 28,  2021  5:24pm EST

    Hello,

    Thank you for sharing your story. I'm so sorry to hear that you and your husband are going through this and he's feeling that way. It's great to hear that he's been getting excellent care. As you hear from others on the forum, I can also share some resources on Living with Heart Failure to help you both learn more. Please keep us updated on how he's doing!

    Best,

    The AHA Team

  • Gmccanna
    Gmccanna, February 2,  2021  1:25am EST

    Thank you for reaching out to this forum, I'm fairly new hear and it has helped me a lot to cope with my new way of life.  
    I'm 47 and was diagnosed with heart failure in September of 2020.  A virus attacked my heart at some point they say.  My EF was around 20% and I could barely walk 20 feet without being out of breath.  Lungs would chronically fill up with fluid and it felt like I was drowning.  It made me feel like it destroyed my ability to be the leader and protector of my family.  Plus sitting at home resting was against my human nature to be productive or have meaning.  I was starting to get depressed and felt like I was letting my family down.  Additionally, I found out the blood pressure medications disrupts your brains ability to transfer short-term memories to the long-term memory camp, that itself is frustrating when you can't remember little things, drove my wife crazy until she realized it was just the medication.  Lol.  Also keep in mind, if he's taking water pills with blood pressure meds they can bring your mood down into a depressive state, plus remove your appetite as well.  Not all people, but I've noticed it popping up in a lot of forums.  
    So, sitting at home, talking new medications, going through something that is life threatening that others don't fully understand, can compound to make one person not look forward to life.  That just me though, that's my experience, your husbands could be different.  
     

    What did I do, I got out side, I got up out of the bed or chair at least once in the morning and one more in the afternoon,  I went for short walks, or walked up and down the stairs just once, or tried to walk around the house slowly,  or I ubered myself to the grocery store and rode around in their electric scooter carts picking up healthy foods that I would at least like, I forced myself to kick my ego so hard I didn't want to see it get in my way of me living my life longer with my family and friends.  I reached out to Forum groups like this one and let my church leaders know what I'm going through.  I had to break my isolation, we humans need fellowship to live, I forced myself to let others know my problem.  I wasn't asking for charity or self pity...I let others have a chance to have them an opportunity to do service work...not self pity, but service work.  Just by doing that, within days I felt purpose and joy come back into my life.  
     

    I also talked with my doctor about the medications and how they made me feel, he didn't want to change them so I went to get a second opinion...try to get one, doctors get stuck in ruts too and become robotic in providing recovery options.  

    Your husband has an ICD now, like me, he should start to feel better, he will be in our prayers as with your whole family.  Also, I have a doctor appointment with a heart transplant doctor in March.  I may not need it, but things are getting set up just in case.  You and your  husband are not alone, he has people here that genuinely want to help.  I would like to hear him on this forum, we have common ground with our diagnosis.   Until then, your in our prayers and keep us posted.  :)

     

    GMcCanna

  • Mrstwink
    Mrstwink, February 2,  2021  9:12pm EST

    Thank you all for your response. It is comforting to know there are others going through what my husband and us are going through. I have learned so much from others and that has calmed me. I will keep you all in my prayers. I wish you well. 

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