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Linda H. Caregiver

CAREGIVER ADVICE FOR SOMEONE WHO'S "GIVEN UP"

My significant other had LVAD implantation last year in May.  Before he had the surgery his heart function was at 15% and he had prepared himself that he was going to die.  His children and I talked to him about pursuing LVAD surgery and he seemed receptive.  We went to Mayo and they said he would be a good candidate for destination therapy.  He made the decision to have the surgery after consulting with his kids.   The procedure was a success and he is back to good health, and so far no complications.  He stays active and has even been able to go fishing again, one of his favorite hobbies.  In spite of how well he's doing, he gets tired of "hauling all this equipment" around and "it gets in the way all the time", he's now regretting his decision to listen to his kids and have the surgery.    After reading several posts of people who have had medical problems after the surgery, I think he's doing very well.  I have told him I'm amazed at how well he's doing, and have tried to point out the positives in his life after having the surgery.  He just goes through the motions of day to day living and doesn't find much happiness in it.  He's told me he's just going through life and is just waiting to die.  Has anyone had to deal with this?  And what do you do?  

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Todd J.

We each have our own crosses to bare. I'm also tired of lugging this stuff around. It gets frustrating, but the only other options besides death, is sitting in the hospital until a heart is available. I guest my first question is, is it a bridge to a transplant?  What is sounds like is, it's time for a family pow wow. Let him know if not by saying it, showing him his worth to you and all of the family members. My family constantly visits and calls to check on me. We all laugh about the fact that I'm a cyborg now who needs to be recharge everyday. What I'm saying is, let him know that you'd rather have him here than not.  Just let him know you can teach an old dog new tricks. Everything he did before, he can still do. Just reassure him of your love and commitment to him. Hope this helps.

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In reply to by Todd J.

Linda H.

Thank you Todd.  I have tried to let him know his value in our lives.  He's beyond the age for transplant so this will be his lifestyle.  I'm hoping to talk with his doctors privately, and I keep in contact with his children, but I believe a family pow wow is needed.  They don't live close to us, but we do need to talk.  I wish you well and I hope a heart is found for you.  Blessings to you.

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MIke S.

I've had an LVAD for five years now. I've gotten used to lugging the gear around and hardly pay attention to it anymore. If it annoys your significant other, look for another way to carry it.  There are lots of shirts and vests available, many or them on MYLVAD. 

The option of dying is very permanent. If he isn't getting enough out of life, look for things that interest him.  Just watching my kids grow up is a pretty strong incentive for me.  A friend once told me that the only thing we can really change in life is our attitude toward it.  He can look for worthwhile things in life if he wants to. Hang in there.

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In reply to by MIke S.

Linda H.

Mike.... I'm hoping as time goes on that he will appreciate this gift of life that has been given to him.  Thank you for your input. 

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Cathie W.

My husband hates the equipment too, but loves life.  He found, for him, much better solutions for carrying and wearing the equipment than what most people wear.  Check these out for him.  

https://www.amazon.com/gp/product/B07CZG7X92/ref=ppx_yo_dt_b_asin_title_o01_s00?ie=UTF8&psc=1

 

https://www.amazon.com/gp/product/B076MM2CMC/ref=ppx_yo_dt_b_asin_title_o01_s00?ie=UTF8&psc=1

 

good luck.  

 

 

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Joyce T.

My husband passed away on dec 21st.  From the time he received his lvad he was always depressed.  I tried many times to reach out to his doctors and tell them. His whole personality changed.  There really needs to be a support program for lvad patients.  This is a very traumatic surgery.  The one thing that is upmost important is keeping your driveline infection free.  If you get an infection. Then things willl really go bad for ad patient isthe lvad patient. We had a car accident and that infection from the accident is what took his life.   So guard your driveline like your life depends on it.

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Joyce T.

My husband passed away on dec 21st.  From the time he received his lvad he was always depressed.  I tried many times to reach out to his doctors and tell them. His whole personality changed.  There really needs to be a support program for lvad patients.  This is a very traumatic surgery.  The one thing that is upmost important is keeping your driveline infection free.  If you get an infection. Then things willl really go bad for ad patient isthe lvad patient. We had a car accident and that infection from the accident is what took his life.   So guard your driveline like your life depends on it.

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Henry R.

My husband has been greatly helped by the vest I made for him, our link is on this page, and I can send you free instructions if you email us at hankpattyrichmond@sbcglobal.net.  The vest is easy to make, works fantastically, and Hank has always said that it made him feel like a normal person again.  We wish you all well being.  Patty Richmond