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Disconnecting LVAD

Has anyone had discussions on disconnecting the LVAD (stopping life support) if there are severe health issues? We are facing this now with strokes slowly taking away abilities.

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lola r.

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.

 
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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.

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lola r.

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.

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Elizabeth G.

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.

 

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Elizabeth G.

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.

 

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Diane P.

My husband had his LVAD for 3 years. Shortly after the implant he started having GI bleeds. He suffered with this the whole time, requiring a transfusion almost weekly! When blood thinners were stopped, he had a stroke. Lastly,he developed a driveline infection which ultimately led to his death. I do not think the medical community does a very good when explaining the risks associated with the device. Had my husband been better advised, he would never have agreed to the implant. I also believe that, due to the number of GI bleeding cases, the Heartmate II is a flawed device with serious problems that need to be corrected.
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jessica c.

My dad got the LVAD - Jarvic 6 months ago. He had a stroke during the implantation of the device but made a full recovery. I did not want him to get the LVAD due to the risks of bleeds and stroke but my dad wanted to give it a try. I don't think he took the risks explained to us seriously. He functioning did not improve since the LVAD, he still had Shortness of breath and had CHF. We constantly had to change his medications around (lasix, coumadin). He was depressed and tired all the time. Last week dad suffered a GI Bleed and had a fall which has left him with aphasia and left sided weakness. He was intibated and has been extibated but remains confused and uncomfortable. He is not eating. We have a living will and have decided to stop treatment and take him home on Hospice. I believe it's the kindest thing we could do at this point. They did explain the risks but if your not a medical profession, I do not believe you can truly understand. This has been a horrible experience.
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Traci W.

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.