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Michelle T. Caregiver

3 Weeks Post-LVAD Surgery, My Husband Still Doesn't Respond Much

My husband got his LVAD 11/27/2019, the day before Thanksgiving.  He was kept sedated for more than two weeks due to problems breathing on his own and the right side of his heart not keeping up with the LVAD.  He's been off the sedation for ALMOST a week now and still is not really responding to questions, requests to move body parts, etc... On days when he has physical therapy and practice breathing without the ventilator, he is utterly EXHAUSTED and just stares into space. He cannot talk because he has a tracheostomy and is on the vent. On days when he does NOT have physical therapy, he will nod or shake his head yes & no, squirm in the bed, move his legs a bit, etc...

How long does it usually take to become responsive after LVAD surgery? My husband is only 61, about to turn 62 years old, so he's fairly young yet. He suffered heart failure over the past year, spent 1/3 of 2019 in the hospital. This LVAD was supposed to rock our world and make his life better. He seems SO DEPRESSED! I think he believes he will never get better. How do I help him? Physically or mentally? He is still in ICU.

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Larry B.

Just being there is the best thing you can do. Sounds like he is still under a lot of drugs. What are his doctors saying? I only ask because this is not normal behavior.

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Deborah C.

My husband too had a difficult time time after surgery. He developed a blood clot pressing on his aorta and had to have a second open heart surgery just two weeks after the first surgery. He had post surgical psychosis and saw horses and other animals in his room, thought eyes were spying on him, told me the nurse kept putting him in the elevator and taking him up and down in the elevator when I wasn't there. Luckily that only lasted 4 days. He was in the hospital for 3 months before I could bring him home. Once home he bounced back quickly and was his old self again.

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Jerry M.

I was in ICU for almost a couple of months and even after I was send to rehab ......so after 8 weeks or so i finally began to remember where I was at. Sometimes it takes more than others to recover from a surgery so keep your hopes up and hopefully he will eventually bee just fine. With the milk of amnesia and other drugs they give you its a wonder you remember what your name was but after you get away from the problems you can get better.

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Michelle T.

I appreciate all the info. 

My husband is becoming a bit more active, is moving considerably more, and will answer direct questions.  This is HUGE progress, in my book!

Christmas Eve, they fitted my husband's tracheostomy with a Passy Muir valve to allow him to talk. We learned to our shock that he doesn't recognize everyone! Further questioning revealed that he does remember some things, but not yet others. He mutters to himself, which he has NEVER done, and seems to have lost his social filter.  He utterly blew his adult daughter's mind when he dropped the F-bomb on her, asking her to "spring him from this f-ing place". The following day, he was much quieter and didn't swear but seemed to remember more things. I think it's like some of you mentioned, he has ICU delirium. They're saying he may move to a stepdown unit today or tomorrow, so maybe the change of environment will help.  I'm going to print out photos of close family & friends, pets, etc...  I've also asked everyone who might visit to ask a nurse to sort of announce who they are when they visit, "Hi, Dennis, your brother Jack is here to see you" or to announce themselves.  I've also asked anyone who might visit to refrain from bringing food or drinks into his room until he passes a swallow study and is allowed to have thin liquids (it's been a month since he's had anything other than tube feed). One thing is for certain, this has been a very educational process!

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MITCHELL S.

Everyone responds differently. This is MAJOR surgery you know.

When he gets out if ICU hell start coming around would be my guess. It can be feeding to go through all that and not feel"better'. Rest assured, the doctors are very very smart, and know what they're doing. Just keep being around him as much as you can.

I had my lvad installed 8/24/18 I'm 61 at the time. After 12 days I went to rehab, and after just a few days I came out of ICU to step down.i was in taken for about 11 days learning how to get out of bed, basic stuff, and building up stamina. They told me the record for getting it is the hospital and home was none days set by a32 year old woman. I tried to beat her record but could not. In total I don't a little over 3 plus weeks between Hospital and rehab.  But I was the exception. 

The doctors were surprised by my progress and still are. I'm playing golf now, and in october I went to Disney world for a week.... BY MYSELF.

 

He will get better, c but reach person is different

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MITCHELL S.

Everyone responds differently. This is MAJOR surgery you know.

When he gets out if ICU he'll start coming around would be my guess. It can be depressing to go through all that and not feel"better'. Rest assured, the doctors are very very smart, and know what they're doing. Just keep being around him as much as you can. Also the pain meds make you"stupid"

I had my lvad installed 8/24/18 I'm 61 at the time. After 12 days I went to rehab, and after just a couple it three days I came out of ICU to step down.

I was in rehab for about 11 days learning how to get out of bed, basic stuff, and building up stamina. They told me the record for getting out of the hospital and home was nine days,  set by a32 year old woman. I tried to beat her record but could not. I spent a little over 3 plus weeks between Hospital and rehab.  But I was the exception. 

The doctors were surprised by my progress and still are. I'm playing golf now, and in october I went to Disney world for a week.... BY MYSELF.

 

He will get better, but each person is different. 

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Michelle T.

Yesterday, he recognized his son with no problems. He finally showed a little interest in the television and asked me for his phone.  He couldn't remember how to use either one very well (he knew some, but got flustered easily). He's still a bit fogged up but it's getting better. I didn't leave the phone with him because I don't want him to buy things by accident, LOL!  He's very frustrated about the muscle atrophy and weakness. He thinks he should be able to just get out of bed and walk!  OH! and he told us he couldn't see where he had open-heart surgery.  I'm glad to know his sternum isn't causing him pain, but it was rather funny as he has new scars!!!

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Tracy H.

My dad is 67 and was on life support for over 38days.  The day they did the trach was so scary. They told us that he had such a tough time we should plan on him coming home By Easter of 2020.   Some days he seemed to recognize us.  Some days he would make eye contact and stare away.  It was heartbreaking.   Out of the blue he woke up and starting fighting and working hard to get better We celebrated Christmas with him at home. Please don’t loose hope.  Not being able to speak or use his hands at first were very hard for him.   

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Michelle T.

I finally got a little time to give you folks an update.  I got to bring my husband home 1/20/2020. He had very weak muscles & weak lungs; everything atrophied from so much time under sedation and in ICU. He has worked very hard to get some strength back, is still having occasional problems catching his breath. We get him out of the house and moving as much as possible. He's been out a month now and is driving by himself again, walks into a store & back out (he'll use a cart if he has much shopping to do), and even went to the State Fair with me (on a scooter)! I am so glad he got this LVAD!!! We're getting into a regular routine at bedtime, covering his dressing for his shower, changing his dressing, charging the batteries, etc... He does as much as he can for himself and I help him with the rest (such as the dressing changes). I encourage him to do whatever he feels capable of doing, but remind him to stop if he gets winded or if anything hurts.

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Julia K.

I'm so glad he's better.  It's EXTREMELY HARD to watch a loved one recover from LVAD surgery.  My husband has had his LVAD for almost 6 years and trust me, IT DOES GET BETTER IF YOU DO EXACTLY WHAT THE DOCTORS TELL YOU.  He was in ICU for 3 months (conscious but very unresponsive), then rehab for another month.  Nobody will tell you what is going to happen because they're afraid of being sued if the outcome is different than they said, but I found lots of solace at the hospital chapel (I also asked chaplains to come pray over him daily) and I also got away from the hospital and went outside, drove to the mall, anything that doesn't have that hospital smell.  This is the hardest part, but hang in there.  There's really nothing physically you can do for him right now.  Take care of yourself too!  You're better for him if you just take care of yourself first.  Sitting there watching them suffer for weeks is awful.  My husband leads a very active life now at age 70.  Thanks for keeping us updated :)