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Anonymous

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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In reply to by Richard B.

Juanita P.

Wow how sweet of her to do that.  I will have to look into her designs and get something made.  Carrying a bag for the last two years is very difficult.....The vest that I do have look as though they are from outer space.   Thank you for your information and your positive attitude.  Keep growing stronger!! 

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In reply to by Loreen L.

Ann G.

Hello, you have been extremely informative, all if the events and experiences we don't anticipate until we have experienced all of the check up, blood work, the long distance travelling, the caring and all the stress and work involved. My husband had his for 18 months even though we were told that the LVAD device can prolonge your life, the quality of life changes overall, the unexpected death can be shocking and it is very important to know every little detail because the doctors don't give information on the huge side effects a patient can have with the LVAD implant, it is very shocking when informed that life can be extended between 4-7 years and then you lose your loved one after 18 months with many many complications, make sure you have lots and lots of support. I had to bee her caregiver with no help and it's not a nice situation to be in. All the best!!!

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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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In reply to by Mark H.

Juanita P.

I did experience psychosis....my EF went down to a 5 percent...I wasn't supposed to live through the night.  Good to hear your on the list, and pray you get a good heart.  Keep plugging along... 

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In reply to by Juanita P.

Richard B.

Actually, I'm not on the list.  3 different doctors told me because my name was not Dick Cheney I was too old for a heart transplant.  I have decided not to change my name.

 

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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.

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In reply to by Damon H.

Bob B.

Damon H.

Before Surgery I was taken to a room to prepare me for surgery meaning body shaved and catheter inserted.  Nurses got tired of my jokes and then put me to sleep; that was when they inserted the catheter into my bladder.  Post surgery  I was out for four days with my chest open to ensure there was no bleeding, plus there was some scheduling issues getting me back into surgery to close my chest.  When I was woken my only desire was for the breathing tube to be removed as it is like I imagine torture to be.  Then, I was vomiting from the drugs, and anxious to eat and drink, but I was only allowed some water until the next day and they allowed me some yogurt.  When you awake you will have three tubes coming out of your chest area and a bandage where they opened your chest/rib cage.  I was told they glued my chest back together so no stables or stitches were present.  On the second day they advised me my organs were not starting back up, pancreas, kidneys, etc.  A day later a doctor came in with lots of students and eventually took me off all enzyme medications for 24 hours and my organs restarted.  Apparently they were replacing all the enzymes my organs would normally produce so my organs didn't need to restart.  After that I was taken to step-down after another day and was allowed to start eating scrambled eggs, etc. while they monitored my digestion and bowel functions.  Once all my organs were started and I was eating again they concentrated on me walking and I had troubles breathing due to the fluid in my lungs.  I would add I had vivid hallucinations for about five days from the anesthesia medications. They started Lasix (Diuretic) and did daily chest xrays.  Eventually a doctor inserted a tube from my back into my right lung and drained the fluid.  My chest tubes were removed when drainage stopped and the catheter was removed first.  You will not gain control of your bladder for a day or two after the removal so don't be embarrassed by the bed wetting.  Next they worked to set the pump speed to stop my mitral valve regurgitation (caused by my damaged heart muscle).  Once the regurgitation was stopped (verified by Echo) I began to feel better and exercise more easily.  I was experiencing VTAC's and AFIB until they realized I was low on Magnesium.  The LVAD kills millions of blood cells so you likely will need Magnesium and Potasium supplements, at least I did and continue six years later to take both.  You won't go home until they have stopped your IV medications (Blood Thinner Warfarin, etc.) and switched you to pill form.  After being at home for a couple of weeks I suffered pump thrombosis and went back into the hospital for six weeks.  The problem looking back was the hospital did not properly manage my blood thinner and my pump clotted.  Warfarin is a sensitive drug that takes time to take effect and is easily impacted by eating foods with vitamin K, greens, spinach, kale, salads, broccoli, etc.  the hospital was calling me one day and saying stop, then another day saying take a large dose, etc.  I manage my own blood thinners now and use Alere home monitoring. I spent two years going to a local anticoagulation clinic every two weeks which taught me all about managing my blood thinner.  So after three months I returned to work and picked back up my life activities.  Key for long term is to avoid a driveline infection by meticulously following the training they will give you for dressing changes.  We use Adhesol medical glue removal and a small makeup removal pad to ease the bandage off each week to try to prevent my skin from bleeding where the bandage was.  When we do have sensitive skin areas we apply a small bandage to avoid irritation to the skin.  Good luck to you - it's hard to recover but worth it in the end.

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In reply to by Bob B.

Richard B.

You make me feel like I had a walk in the park.  I had ICU psychosis, but other than that:  3 weeks and I was out of the hospital without any of the problems you mentioned.  A month in midtown Manhattan in case there were complications (there were none).  Weekly blood test for a while; now it's once a month.  Driveline infections are a real danger.  Make sure that if you sweat, that you immediately clean around your wound and change your dressing even if it's the 2nd time for the day.

 

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In reply to by Damon H.

Mark H.

 I think after surgery goes different for everybody. With me I was in the hospital for a week or so before the surgery getting water removed. After surgery they kept me asleep for a few days watching me. Making sure there was no leakage.  After that recovery for me went really slow. I was in the hospital for I believe about a month. As I slowly got better and more energy. It was a lot to get used to. But I got good enough at one point I went for a 7 mile hike with the wife . 

 At one point I guess I got two comfortable. And careless. Left my back up pack in the car without realizing it. And went up to the AT&T Stadium about seven blocks away. Do you watch my wife do a spartan race. Somehow I also did not get my fresh batteries put on that morning . 

 in the middle of the race my low battery alarm went off. I didn’t think I was too panicked. I figured I had enough time to get back to the car but I had to go like I intended to get somewhere. However on the way there I guess I did panic in my heart rate went to high. My defibrillator went off. When it went off it shorted out. Went off five more times. Six times total . I had to have my defibrillator replaced. And there was complications during the surgery. I haven’t fully recovered from that and it was three months ago now. I don’t have the energy to go on a 7 mile hike anymore. Don’t let your husband get careless. And he will be fine.

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Michael O.

I am 73. I received a Heartware LVAD on February 28, 2018. I was in hospital for about 2 months including some rehab. I was very weak when I got home and needed more physical therapy. Little to no pain post surgery. My wife did most things after getting home but I now change my own dressing, go to gym and walk in mall and have resumed work as a lawyer. I have had no complications and life is good. I can go on trips and enjoy my my grandchild. LVAD has been a lifesaver. Hopefully, your husband can look forward to more years with an LVAD. My wife was very scared at first but she now sees her friends and has regained her life. Have hope and things will get better

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Art M.

I had my LVAD surgery on Jan 14, 2019 I was in ICU for 5 weeks Then to a regular room, then to an in hospital rehab unit. I was released from the hospital on March 14,  I had open heart surgery 3 years ago to replace a mitrol valve,  Because I had open heart surgery before I was expecting a similar experience. what happened to me with my LVAD surgery was way more complicated then I expected, intubated for 11 days, loss of all strength and ability to swallow and even had a hard time talking after the breathing tube was removed. I felt like I was a baby and had to be taken care of just like one. While I think everything will work out and I will get all of my strength back, I am eating, walking without support and I am weaning my self off of oxygen,  I am told I just have to have patience.  So far I feel it has been worth it.

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Richard B.

having gone through this myself, I can tell you it's not normal, BUT it's not unusual either.  After they got me out of somewhere, they asked me if I remembered anything about the 4 days I was out of it.  I said yes.  5 man attempted to kill me.  they said it took 6 big men to hold me down.  If he's as bad as I was it's call ICU  psychosis and he will get through it.