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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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Replies to "New to this forum, I turn to the communicate for input. We recently been referred to..."

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)

I have a heartmate lvad. It has been nothing but trouble. Yes, it has kept me alive in the literal sense but.. my machine has been recalled for over 14 different reasons now I've been involved with three of the recalls. I was told I was going to be put on a transplant list as soon as I got my BMI down. Well that took like a month. A year and a half later I asked so where am I on the list? They replied, you're not on the list. I never would have got this damn thing if not for being on the list. Then they sold me this thing over the heartmate. Telling me new is better. So yes my machine has kept me alive and I've got to be with my family a little while longer but I feel completely used for a study. And then I was completely dropped when my lvad got recalled. The whole atmosphere changed. It was like they didn't know me didn't give a s*** about me and I was annoying them. I can't say anything about other people's experiences because I know they do a lot of good but, Mayo really screwed me over and used me. I was put into a control group never going to get a transplant. And was never told. Nice huh?