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Mike S. Recipient

Deciding Whether to Get LVAD

I have Stage IV CHF. I'm on a milrinone pump and living at home with my wife. I am weak and breathless, but able to do simple housework and run errands and go to movies. I generally enjoy life. I've been recommended for an LVAD and am trying to decide when to get it. I am tempted to put it off because life is pretty good right now, and it looks like a very big deal, with weeks in the hospital or rehab facility and being laid up at home for more weeks. I live in Washington, DC, and will get the LVAD from the Medstar Cardiac Institute at the Washington Hospital Center. Any advice from people who have been in my position and have selected implantation?
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Neil G.

My advice would to be stay where you are. If you are moving along dine with the juice then there really isn't much of a need to move to an LVAD. I was told that after a few months I would feel better than I did before the LVAD. Bull. I feel worse. Worn out, tired, whipped daily. Sleeping is a thing of the past. The LVAD requires so much maintenance that it gets in the way. Just my 2 cents.
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Larry L.

I too was "weak and breathless" and knew it would not get better in time. The prognosis was everything internally will get worse due to a low by half ejection rate in the lower heart chamber. The LVAD bridge to transplant works, keeping internal organs flush and circulation good. Why not, I asked myself. Looking back at the op and recovery in hospital, then going home with all the attachments was, honestly, somewhat intimidating, and awkward too, at first. And uncomfortable. However, by following the guidelines given to me by the staff and doing what was recommended, life got BETTER. Coming up on two years now in Dec. the past is a blurred memory and the present is, well, remarkable. No low energy, breath is back, walking a mile plus each day. The last difficult activity to ease was bending over to do things like tie shoes or get something off the floor. I'm 67 now, I feel good. Working out my own comfortable way to wear this equipment was a game changer as well. Best wishes.
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Diane P.

My husband got his LVAD 3 years ago. Sadly, I lost him this month. While the LVAD can be, and is, a lifesaver in some cases, it also can cause some very serious complications. Pat suffered gastro bleeding for the entire 3 years, requiring a transfusion almost weekly. He also suffered a stroke, clots and a driveline infection that led to his death. My advice would be that you seriously consider the risks before agreeing to an LVAD.
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In reply to by Diane P.

Pat A.

Went through it all . Bleeding, infections the gamet , but God was with me the whole way . It was quite a journey , but a made it through . After 5 yrs. I've been blessed with a new heart. God bless you all . Follow your heart it won't be easy , but my outcome is wonderful. I hope it will be for you all.
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Christy R.

My dad was in a similar position earlier this year--chronic congestive heart failure, very weak and breathless, but generally happy and able to get by day to day. Every time the doctors brought up the LVAD, he said he wasn't ready to think about it. His health very rapidly declined last month, landing him in CCU with a-fib and v-tach attacks, having to be defibrillated 5 times in 4 weeks. At this point, LVAD was the only option, and he was definitely ready to talk about it. However, there is a decent amount of testing that needs to be done before the procedure, such as a colonoscopy, dental exams, chest x-rays, and follow-ups on anything unusual they find. The testing set him back probably 2 weeks, at a time where he was quickly running out of time. His surgery was 4 days ago, and so far, things are going great. The last few days before the surgery were dire, though, and there was a chance they wouldn't do the procedure because of a possible infection in his lungs. I really wish he had at least prepared himself to get the LVAD while he was in a healthier condition earlier this year. It would have saved some critical time and may have prevented some damage done to his body while waiting. Just hoping we can help out someone else who is feeling too "good" for the LVAD right now, but may need one in the near future!
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In reply to by Christy R.

Magon B.

I am 25 years old and I have postpartum cardiomyopathy. I am at 10 % EF. I feel good now they have fluid off and put a balloon pump for a week!I am not shortness of breath any longer! But in all reality my heart it sick and now is the best time while my other organs are healthy! I am listed now at 1A transplant as of this morning. They will keep me on for about a week and if no heart comes available to me in the week of time then they will schedule LVAD! This story of your father helps me out so much because I wanted to wait and go home and if I got worse I was gonna do it! But knowing that there might not me a next time or I maybe to sick later changes my outlook! May God bless you and your family!
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Mike S.

Thanks to everybody for your input. I decided to get the LVAD because my heart continued to decline to the point where it looked like the only alternative was death in a few months. The surgery went well and my LVAD is doing what it should. Peripheral complication with my lungs due to the initial heart failure and my age (78) have kept me from getting as strong as I would like, but I'm hopeful that the lungs are fixed now and I can start gaining strength. I have been blogging about the experience at if you would like to know more about it. Thanks again for your input, Mike