Anyone have experience with a Left Ventricular Assist Device (LVAD)?

Posted by chipmunk16666 @chipmunk16666, Mar 20, 2016

I just had a lvad placed last month, i was wondering if anyone else has experience with one?i also have an icd which was turned off during surgery because the lvad runs my heart now.

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Hi @chipmunk16666, and welcome to Connect. I’m searching for other members who have recently had an LVAD placed, but in the meantime I wanted to connect you with @fr0ggie who recently had an ICD implanted. I hope you both are able to share experiences, as well as provide support, tips and advice to each other.

How has the first month been with your LVAD?

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I was in icu for 5 weeks then moved to a step down floor. I just got home wed. Im really sore the battery backs weigh like 10lbs that you have to be on. Its been rough cause you have to learn to walk again get up and down. It takes time to recover

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@alysebrunella

Hi @chipmunk16666, and welcome to Connect. I’m searching for other members who have recently had an LVAD placed, but in the meantime I wanted to connect you with @fr0ggie who recently had an ICD implanted. I hope you both are able to share experiences, as well as provide support, tips and advice to each other.

How has the first month been with your LVAD?

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I have an icd but when they installed the lvad=heart pump they turned it off. But i can share experience about icds the lvad is new to me

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Hi @chipmunk16666,
It’s been a year since you had the left ventricular assist device (LVAD) placed. How are you doing? What has the road to recovery been like?
We look forward to hearing from you.

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I am a recent LVAD recipient, and I am looking for people that are in a similar position as me to chat with. I got the HeartMateIII, and I really struggled with my new life and how complicated it would be (things are different). This computer that I have to carry around really made me self-cautious and made me stay home because of my insecurity (does anyone else struggle with this?). My hospital made a recommendation to me, and I am so glad that they did. I was referred to the carewmedicalwear I tried many different ways to help me feel more confident, but this was well worth the money spent. I now feel a lot more comfortable in public and in cardiac rehab. As a LVAD patient, I thought it would be nice to share this for people that are like me and struggle. My hospital did say that they have a non-profit that is going to stock this LVAD vest in the hospital to give to the patients. So cool! Well, hope all of my other lvad friends are living life to the fullest and getting around the best we can. Stay Strong!
Bryan

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@bryans

I am a recent LVAD recipient, and I am looking for people that are in a similar position as me to chat with. I got the HeartMateIII, and I really struggled with my new life and how complicated it would be (things are different). This computer that I have to carry around really made me self-cautious and made me stay home because of my insecurity (does anyone else struggle with this?). My hospital made a recommendation to me, and I am so glad that they did. I was referred to the carewmedicalwear I tried many different ways to help me feel more confident, but this was well worth the money spent. I now feel a lot more comfortable in public and in cardiac rehab. As a LVAD patient, I thought it would be nice to share this for people that are like me and struggle. My hospital did say that they have a non-profit that is going to stock this LVAD vest in the hospital to give to the patients. So cool! Well, hope all of my other lvad friends are living life to the fullest and getting around the best we can. Stay Strong!
Bryan

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Hi @bryans,
Welcome. I moved your message to this existing discussion about LVAD so you can meet @chipmunk16666. Chipmunk had an LVAD placed last year.

Bryan, when did you get your LVAD?

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@bryans

I am a recent LVAD recipient, and I am looking for people that are in a similar position as me to chat with. I got the HeartMateIII, and I really struggled with my new life and how complicated it would be (things are different). This computer that I have to carry around really made me self-cautious and made me stay home because of my insecurity (does anyone else struggle with this?). My hospital made a recommendation to me, and I am so glad that they did. I was referred to the carewmedicalwear I tried many different ways to help me feel more confident, but this was well worth the money spent. I now feel a lot more comfortable in public and in cardiac rehab. As a LVAD patient, I thought it would be nice to share this for people that are like me and struggle. My hospital did say that they have a non-profit that is going to stock this LVAD vest in the hospital to give to the patients. So cool! Well, hope all of my other lvad friends are living life to the fullest and getting around the best we can. Stay Strong!
Bryan

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Hi Bryan, I have a right VAD and left VAD (Bi VAD) I have a heartmate lll and a Heartware ll. I find it very difficult getting around. I have seen the vests, but I don’t think they have invented anything for Bi VADs. I seen your post was written awhile ago, so I hope you are doing well and have gotten your confidence back! Would love to chat with you!
Sincerely, Rachel

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New to this forum, I turn to the communicate for input. We recently been referred to the Mayo Clinic (awaiting for an appointment) for consultation on LVAD and if it's the right stage for my husband to get. I have read so many complication that I do not know where to turn to. Any input is greatly appreciated. My husband is very depressed in thinking about another open heart surgery. Am devastated and cry every day in secret. He had open heart surgery 9 years ago to replace the aortic valve and it was not fun. Anyone with the LVAD passed the 2 year mark?

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@buckeyegurl

Hi Bryan, I have a right VAD and left VAD (Bi VAD) I have a heartmate lll and a Heartware ll. I find it very difficult getting around. I have seen the vests, but I don’t think they have invented anything for Bi VADs. I seen your post was written awhile ago, so I hope you are doing well and have gotten your confidence back! Would love to chat with you!
Sincerely, Rachel

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Hello how are you doing day with your VAD?

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@marleneizzy1

New to this forum, I turn to the communicate for input. We recently been referred to the Mayo Clinic (awaiting for an appointment) for consultation on LVAD and if it's the right stage for my husband to get. I have read so many complication that I do not know where to turn to. Any input is greatly appreciated. My husband is very depressed in thinking about another open heart surgery. Am devastated and cry every day in secret. He had open heart surgery 9 years ago to replace the aortic valve and it was not fun. Anyone with the LVAD passed the 2 year mark?

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My husband spent a month at the Cleveland Clinic in 2004 where he had his aortic valve replaced, his mitral valve repaired, and an AICD implanted. He had complications (pneumonia, a staph infection, code blue, and a second surgery to do a wire weave of his sternum because he coughed it apart). It took him about a year to fully recover.
Last fall, his heart failure worsened. His heart failure doctor explained the INTERMACS system (attached) to us. It was shocking, but it helped us understand our options.
On Nov. 22, 2021, he was admitted to Christiana Hospital (in DE) where they put him on Inotrope therapy. The Milrinone helped, but it wasn't going to be a long-term solution. We decided to move forward with LVAD surgery because we thought he was probably at his strongest at that point. He is 70 years old. On Dec. 7, 2021, he had LVAD surgery. His complications included getting C-diff, a UTI and Covid (while in the hospital). He was discharged Jan. 14, 2022. His complications involved infections; there were no complications with his heart or LVAD. I think the normal hospital stay is around 3 weeks, but because of his complications, he was in the hospital almost 8 weeks. We were thankful he had his Covid vaccine and booster prior to his hospitalization (because Covid could have been much worse).
Living with an LVAD is a big change in lifestyle, but we have gotten into a routine and are handling it. We've been told it will take about a year before he feels like himself.
Prior to his LVAD, we could see his health failing. Now, with physical therapy, he is improving. Without the LVAD, he probably would have lived about a year. With the LVAD, we expect him to feel much better in a year. It is an adjustment, but we're glad he has his HeartMate 3 LVAD.
Prior to the surgery, they had a man with an LVAD come and talk with us. He had his LVAD for 2 years. He said he was cleared to drive at 7 months, and he was feeling good. He had been on Inotropes for about 6 months prior to his LVAD, but that therapy started to fail. He was thankful for his LVAD.
If your husband has the surgery, I'd be happy to share what we have learned. For example, my husband initially would carry the controller and batteries in a special LVAD bag. Then, we learned of a vest (at https://mylvad.com discussions). Then, we learned of LVAD shirts (sold on Etsy). My husband prefers wearing the controller and batteries as part of his clothing rather than carrying a bag.
If the Mayo Clinic has a support group for LVAD patients, it might be helpful to attend a meeting. I know meeting with an actual LVAD patient helped us. We got to see what an LVAD looked like, ask questions, and hear his real life experience.
Best wishes as you learn about the options and make your decisions.

Shared files

INTERMACS (INTERMACS.pdf)

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