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N P. Family Member

Need advise- recent Lvad experience

Hello

My Aunt got her LVAd around 3 weeks back but unfortunately the recovery is extremely slow. She is in early 50s.

she was on ventilator for almost 2 weeks. She is able to breathe on her own now but we have noticed:

- she keeps her eyes closed for most of the day and doesnt talk much

- she mumbles and sometimes says random stuff, calls  her son Uncle and feels disoriented. She is mostly agitated

- she has not been able to walk yet because of extreme swelling. We have not been told of the reason for swelling

- she has gotten arrhythmia twice after surgery. 

- she is still in ICU and wont be shifted to regular room until she can walk

- her left arm shows no movement

all of the above is making us very worried. Can you please share of anyone had similar experience and how long the recovery took. It feels like we take 1 step forward and 2 steps backward. How can we help her become more oriented and talking? She has no motivation and complains of pain.

 

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Jennifer L.

Hello. I am very sorry for the hard time your aunt is having.  My husband had his put in Nov 2019, he is mid 40's and a couple of the things you mention he had as well. He was on the ventilator for 6 days, and he had a hard time talking for a little while after, in fact his voice had changed for the first month or so after he came home. The left arm he had to have occupational therapy at home on for a few weeks and had a hard time using it also, they say it's the way it was tied down during surgery and then laying in bed for a couple of weeks and not using it. The swelling was awful in his legs and knees and that was due to something to do with his veins dialating, and they said because he was young it happens more. We were very blessed with our LVAD team, they would answer any questions we had. I hope you have a team that can be helpful. Sending out positive thoughts and prayers for her! 

 

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N P.

My aunt was shifted to room from icu.

however there is no improvement, she doesnt walk at all and is not interested in therapy. She is agitated ans keeps scolding everyone. Doctors think she has icu psychosis. 
can  you please share your experiences and how we can help her get motivated. Her body has become very heavy because of swelling and the doctors say she needs to try to move to help lower the swelling but my aunt doesnt listen.

 Please help and advisw

 

 

 

 

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In reply to by N P.

Valerie T.

My dad had ICU psychosis for almost 3 weeks after his LVAD.  It’s very serious and caused hallucinations and agitation. He wanted to pull the plug. Talk with staff to find out how they are treating it. Visitors are important, fewer pain medications so they are more alert, and even a change in scenery. They would roll my dad to the end of the hall where there was a window. Our surgeons were terrific but the nursing care was hit or miss. I communicated With the doctors and nurses, several times a day. Don’t be afraid to ask questions and advocate for your loved one. 

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Evelyn G.

Sorry you are going through this with your loved one. All you can do is encourage her, make her happy and give her something to look forward to when she gets better, and most of all, pray. This all falls on the person going through it, they gotta have the will and need to want to fight through this. Don’t give up on her, continue to work with her, if she is still not up to walking, do some stretches on her legs and arms while still on the bed. Keep talking to her and just being there for her day in day out. Reach out to your community, social media, families and friends, to have a prayer chain going for her, it does wonders. Good luck and god bless!

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Mike and Kathy N.

My dear Husband passed away about 3 months and we have the LVAD II charger, 4 batteries, wall unit, and vest. We are looking for someone in need and who is willing to pay for shipping. If interested please reply to this or reach out via email at katnip000@yahoo.com.

Picture of equipment described!