Disconnecting LVAD

Sorry but no. Not even at the doctors. I would like to hear a follow up from you though regarding the stroke and what brought it about and what the doctors are saying.

My mother had the LVAD as a bridge to transplant. We were told from the get go, strokes could be a side effect eventually from the LVAD. After having it for about 2 1/2 years she had a small stroke and was fine. About a year later, she had a pretty bad stroke that , after a lot of therapy, left her with slurred speech and weak right side. 4 months after that she had a catastrophic stroke. It left her bed ridden. No use of either side, feeding tube, unable to speak. The doctors presented us with 2 options. Knowing she was no longer a transplant candidate: we could either put her into palliative care with slim hope of her getting better and basically wait until she eventually has another stroke that will end her life or , The LVAD is life support, so we could disconnect. My mother did not have a living will. So we had to make the choice to disconnect. It is a unique situation with the LVAD and strokes...things you would need to do for the strokes are bad for the LVAD and things important for the LVAD are bad for strokes. We met with all the doctors and they told us they have turned off LVADs as life support many times for various reasons. I never knew before this, this would ever be an option. I would highly recommend any one that has one though making a living will or speaking to their family about their wishes. It would definitely help the family, speaking from experience. In my mother's case, I see it as a blessing in disguise. She never would have wanted to live like that. If it was anyone else, that did not have an LVAD, there would have been no choice to be made. They would have had to live like that.

So sorry to hear about your mom and the tough choices you and your family had to make. Dealing with lvads is an ordeal within itself. There's the pros, but sooo many cons. The docs were never upfront with us about what really happens with these things, they just talked about how much more she would be able to do and how other people have lived an extra 10 years with lvad. I try not to think about the whole situation selfishly but it is life changing, not only for the patient but the entire family. My mom has had the lvad since dec 2013 and has had a stroke which weakened entire right side including being blind in that eye and has suffered 2 GI bleeds. We have no living will either and is definately something we need to touch on before we are faced with those decisions. Thank you for your story, I never knew that if things got too bad, that disconnecting was even an option. Hopefully my mom marches on and that choice won't have to be made.

My mom received her VAD one year ago.  Two weeks ago we entered the hospital with a GI bleed. After unsuccessful attempts to stop the bleed, she made the decision to have the VAD turned off. We had expected the end to come quickly. 24 hours later, we are still sitting by her bedside praying that the sedation is strong enough that she is no longer feeling the pain of the cleaning. There are so many questions we wish we had known to ask before implanting.  Mom was asked if she regretted her decision a few weeks ago, before we faced this bleed. She really didn't know if she had regrets or not. I do not believe that our surgeon or the team who has been with us withheld information on purpose, and there is no anger, but I do wish there had been more discussion about the end.

My mom received her VAD one year ago.  Two weeks ago we entered the hospital with a GI bleed. After unsuccessful attempts to stop the bleed, she made the decision to have the VAD turned off. We had expected the end to come quickly. 24 hours later, we are still sitting by her bedside praying that the sedation is strong enough that she is no longer feeling the pain of the cleaning. There are so many questions we wish we had known to ask before implanting.  Mom was asked if she regretted her decision a few weeks ago, before we faced this bleed. She really didn't know if she had regrets or not. I do not believe that our surgeon or the team who has been with us withheld information on purpose, and there is no anger, but I do wish there had been more discussion about the end.

My husband had a LVAD HeartMate 3 implanted on 8/24/2018. We were waiting for heart put things became critical.  One week and a half into recovery he had a stroke. I am angry, fustratated. I wish we never got this device. All along he has been near death never had a heart attack or stroke.

My son was 32 when he got his lvad. He had it for 10 months. It was one problem after another. Brain bleed, GI bleed, terrible infections.  He ended up with a staph infection where he would have to be on antibiotics the rest of his life.  He ended up hating the lvad.  The belt and the batteries were cumbersome and hard to hide. It made him so self conscious. He could no longer do the things he loved.  He was always anxious and depressed.. One month ago he took his own life. He disconnected the lvad. I found him the next morning in his bed and I am so heartbroken and filled with grief.  He was just tired of being in pain being depressed. He was sick of hospitals and clinics. He told me several times he wished he never got it implanted. My life will never be the same. The extra 10 months the lvad gave him was not worth it. I loved him so much.  There is such a high risk for infections.  He was so particular about keeping everything clean and changing his dressings using sterile technique but he still ended up with infections.  I lost my son. I also lost a piece of myself.