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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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In reply to by Linda H.

Sharon S.

Do you have an LVAD support group near you? Also have you spoken to his doctor about getting counseling? Does your husband have any of the different types of LVAD vests, shirts or undergarments? My 84 year old husband received his LVAD 6 months ago in August 2019 & is doing really well. Our hospital & 5 LVAD coordinators have support meetings every other month where they serve us lunch, have a speaker and patients share their stories and help each other with questions.  We just had a support group meeting today and we always come home very encouraged. A couple of months after my husband's surgery, I told him how proud I was of him having to deal with all of the equipment etc. and his answer was "I'm alive!!"

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In reply to by Linda H.

Ray H.

I too have a destination LVAD.  I have had mine over 2 years now and I have to be honest with you, sometimes I get a little tired of the routine.  I have several ways I get around the down moments--I start a new project around the house (I was into DIY before LVAD) or I work on my stained glass, a hobby I hadn't done anything with for several years before the implant.  My wife encourages me to talk about when I am down and listens without judgment, a trait which I am going to guess you also have from your call for help.  I am happy he can go fishing now; encourage that.  The wearing of the LVAD gear has something to do with my mood also.  My normal daily wear is a VAD shirt (or tactical shirt with a sown on pocket, much cheaper) and an outer shirt a size bigger to accommodate the bulk.  Some days, just to feel more normal, I like to wear a t-shirt against my skin and a vest ( I have both a LVAD vest I purchased and a fishing vest) over the outside.  I don't know why, but it makes me feel more normal.  You can suggest things for him and have powwows, but he is going to have to work this through inside.  It sounds like your encouragement is probably all you can do to help him through the rough patches.  My last advice from the other side of this issue is that you need to let him decide what his limitations are.  My wife frequently worries too much because I am working too many hours fixing the fence, etc., and it can irritate me.  I always tell her (and it is true) that I know my limitations and rest frequently and stay hydrated, but I need to be left with some dignity about my decision-making.  Anything too much comes off as nagging and detracting from my "manhood."

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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

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Jennis H.

Dont give up. I was an LVAD patient with less than 10% function after a heart attack and 3 strokes and was expected to keep my LVAD until they found me a heart or I expired, whichever came first. So, I did the same thing, prepared to die. But something inside me gave it to God and this ENORMOUS STRENGTH rose up inside me, and God took over. I started to live my life with purpose, choosing to see all of the things I was GAINING instead of LOSING. When I did that, I was able to lift others and counsel them and that helped me, too. 3yrs later, Sept. 28, 2017, I found out my LVAD cord had broken at the base and I had a resulting staph infection about to go septic under my heart. It took 3 more miracle open heart surgeries in 5 days(Oct. 9, 11, 13) at Banner Good Sam in Phoenix, AZ,  for them to remove my LVAD to treat the infection and replace my LVAD, but, they never put a new one in, because when they took out the broken one, my heart started to beat on it's own, going from less than 10% to 45% WITHOUT THE LVAD during surgery. They left it out, and my heart has been beating on it's own at 40% -45% ever since! PRAISE GOD! My Surgeon, Dr, Amibile, says he has NEVER seen or heard this in 30 years of practice. That I am a miracle. I say Jesus is the miracle. I say all this to say, you dont know what your future holds, but,  give it your best, give it to the Lord, and when you believe and dont give up, He can bless your life in ways YOU CANT IMAGINE. TRUST. Blessings to you and your family.💖

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In reply to by Jennis H.

Hope W.

Hi Jennis!

Thanks for sharing that story!

My faith in God is also strong. When I woke from my lvad surgery on the 4th day I could only move my fingers and toes. I lay there and said to God, "Well, I know that you have a purpose for ALL things. I don't have to like it or understand it but if I believe in you I'm supposed to thank you in ALL circumstances. So, thank you for this and whatever your purpose is for me being here. If you brought me to this, you'll bring me through this. I know that I can do ALL things through Christ who strengthens me...I'm ready Lord".

When I was waking up I saw a multicolored heart that said, "The only thing God cares about is LOVE". The word love was written on the heart and kept growing and coming closer to me till I woke up. For the first 24 hours after waking, when ever I closed my eyes I saw a slide show of my life. Frame by frame I saw every relationship. The thing I came away with was that I was now seeing my life and relationships through God's eyes. They were so important. I also was able to see golden sparkles on the Christians who came into my room. They were covered in sparkles. I saw writing on the walls. I was very much at peace and believe that it was the prayers that were being said for me that were causing this. I experienced the peace of God through the whole almost 4 months of hospitalization.

Im so happy to hear of Gods gift to you!  Praise God and his son our Savior Jesus Christ! 

I was told that I would have a life threatening heart condition but that I would be mostly ok. That I would not recieve a healing. I was told this by a woman with the gift of prophesy in 1993 and by a man with the gift of prophesy in 2010.  I was diagnosed with an idiopathic, non-ishemic dialated cardiomyopethy in 2011. I still hope for a healing or even a transplant and never rule anything out!  But even if it is a no, just like my first day after my surgery, I know that he has a purpose for all I go though or will go through.

I believe as well that your healing was by his hand and it brings me such joy to see his hands at work!

Thanks again for sharing your story!

Peace be with you!

Your sister in Christ!

Hope