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Eileen A. Caregiver

Husband just had LVAD surgery please give advise

my husband is 72 end stage chf he had LVAD surgery fri morn it’s now tues and is still Intubated . Whenever the drs try to wake him up he gets very agitated and stressed. So the have to re intubate him. I am very scared for him. Is the confusion he is experiencing normal. ? 

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Loreen L.

Father in law had LVAD surg 6 years ago in last stage CHF also he was 80 and he had a LONG road to recovery. He was intubated & in Cardiac ICU for 2 months I wanna say and in the hospital for 3 months at least. Back & forth for various tests, blood transfusions etc... It was a roller coaster ride for him and the family & at times still is. We had many meetings with the Dr & staff during that 3 month period, sometimes with a grim outlook but he pulled through. He had many times of confusion during this time due to the medication we assumed. When they attempted to get him off the breathing machine many times he was not able to breathe on his own & He was also agitated when they attempted to remove the intubation tube,(it must be a bothersome process) eventually he was successfully removed from it. I hope that you have a strong support system for YOU Ms Eileen or any future caregiver because you are going to need it. At the time there was little information out there regarding recovery- we were only told about the successful one or 2! We were told he’d be golfing again (wrong) and resuming normal activities (wrong) I pray you have better luck - did they have the end of life discussion with you and he before surgery? We never thought about that & we had many questions at the time and this important subject was never discussed... It’s like being on life support- and what if the power goes out at your home? He has one speed - slooow but steady, sometimes he gets breathless, traveling has become very limited, they used to cruise often with us.  Being loved is wonderful we never want to say goodbye to our loved ones at any age but consider all the potential situations before having this life changing process done. It changes everyones life. 

I hope this answers any questions both asked & thought about.

PS even in his non active state we are very glad & blessed to still have him with us - I love my in laws so much ❤️

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In reply to by Loreen L.

Richard B.

I was 3 plus weeks in the hospital (71 at the time) and a month in rental housing in NYC because they wanted me nearby if there were complications.  Fortunately, i didn't have any.  I'm now 3 years out (74) and doing many of the things  I did before, walking (they wanted me to walk and walk and walk at the beginning, but no lifting).  I garden, travel internationally and do all the other normal things I did before, but no swimming, water skiing or skiing.  I sold my kayak but didn't sell my bikes although I still don't use them because of safe places to bike.  The best battery controller holders  have are modifications to the Hank and Patty pattern and the Etsy LVAD Tee shirts which Frances Tubiolo sells for $79.95 or so.  Frances will modify her design to your specifications so for me, she removed most velcro, raised the underarm battery pouches up to my armpits so I can tuck my shirt in under a dress shirt (I have a short trunk), and moved the controller higher so it didn't rub agains my wound.  After we came up with exactly what I wanted, I asked her what it would cost to modify my earlier orders.  She refused to charge me and wouldn't even let me pay for the shipping.

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Bob B.

So, suspect your doctors know better, but when I had my LVAD surgery in April 2013, I remember my panic upon waking with the breathing tube.  That was all I focused on apart from a three hand squeeze to my wife to let her know I was okay.  Took about 3-4 minutes before they took the tube out, but it was pure torture until it was out.  Have they removed the breathing tube?

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Stephanie G.

Ask the doctors to give him something to keep him calm as they wake him up. My husband got his lvad on 1/15/2019 an was having the same problem as your husband is. I’ll keep you in my prayers and stay strong. 

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In reply to by Stephanie G.

Richard B.

The doctors kept me out of it for 4 dsays post surgery.  When I awoke, there was a team of doctors surrounding me.  They asked if anything had happened to me while I was out of it.  I said "Yes, 5 men in horizonally striped shirts tried to kill me."  They responded:  "You had ICU physocis. It took 6 big me to hold you down."  They also told me that ICU PSYchosis was not that unusual.  When they finally took me out of the ICU they may sure I had a window view bed.

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Mark H.

i got a heart mate 3 Dec. 2017. And have had approximately 15 surgeries in my life. I have never had icu phycosis that I know of. I am shure glad of that.now I am on the transplant list, waiting for the beeper to go off. Good luck . I will pray for him. 

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Thea M.

When I saw my husband in the ICU after his surgery, he was in restraints to keep him from pulling his tubes out. He was very agitated and it took a lot of effort to calm him as he came out of anesthesia.  He had so many needles and tubes in him it was hard to tell what was attached to what. He was confused for several days. 

The day he was transferred to rehab he came down with an infection. The symptoms included a PTSD flashback, disorentation, and a lower than normal temperature. He was sent back to ICU for several days, then sent home after a month in hospital. He was released November 20, 2018.

Four months later, he is driving himself to PT, running errands, shopping, showering and for the most part back to his pre surgery schedule. 

Along the way to recovery there were a few 'stumbles' such as memory loss, a staph infection, a rash from the adhesives, extra bleeding from the blood thinners, lots of changes in medications, and general aggravation from being on a cord or batteries 24/7.

After four months I am finally comfortable changing his dressings and leaving him alone for a couple of days at a time.

It is very important to take care of yourself as a caregiver. I try to keep myself healthy, visit friends and relatives, enjoy my hobbies and social events, etc.

 

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In reply to by Thea M.

Richard B.

Good for you.  I assume that he is able to change his dressings himself if you leave him alone for a couple days.  I am flying up to NYC from Naples Fl in early May for a 5oth reunion.  My wife insists she  will not go with me although I'll believe it when it happens.  We are back to our world wide travels and have started doing river cruises so I don't have to move my equipment so often.

 

Good luck

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Damon H.

Good afternoon LVAD community. I am 50 yrs old and have been diagnosed with end stage heart failure. I am going to be admitted to the hospital on Monday and the LVAD surgery is scheduled for Wednesday. I have been reading,watching YouTube videos and  whatever else I can find about the LVAD device, surgery and aftercare. I thought I was ready but as I sit here now and time is getting closer to surgery day I must admit I am nervous and scared. Can you guys please advise me as to what I am going to be in store for. No holding back  give me the real talk. What happens right before surgery? Did your spouse stay in room with you the night before surgery and what was icu like ( were you awake)and what were the days after you leave the icu like. How long was your total hospital stay and has anyone had any issues after surgery. Has anyone return to work or is anyone on SSID. Thanks for you comments and help. 

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In reply to by Damon H.

june B.

Damon H.,

I had LVAD surgery on November 6, 2017 at the age of 69. I was waiting on a heart transplant but my heart was deteriorating to the point that I had no choice but to have the LVAD implantation. I had very few problems with my surgery or recovery. As a matter of fact, my doctor said that i was progressing just the way an LVAD patient should. I have had very few problems and am back to doing many of the things that I enjoy doing like going to Curves exercise facility, volunteering in the community, teaching Sunday School, and enjoying time with my family and especially my grandsons who are 4 and 7. They are the main reason I chose the LVAD because I wanted to see these boys grow up. 

I was not nervous at all because I was confident in my surgeon's ability and had been totally prepared ahead of time. I do not know if you are a believer, but my faith played a major role in my comfort level with the surgery. My only problem was the recovery time. I got a little impatient but now that I am into my second year with my LVAD I take everything in stride.

I pray that you will have a successful surgery and recovery. God bless you Damon! I will keep you in my prayers.

June B.