Husband just had LVAD surgery please give advise

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.

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!!!

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.

You would know it if you had it. 

You would know it if you had it. 

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... 

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

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.

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.

 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.