My dad at 67 didn't survive the LVAD and RVADMon, 05/11/2020 - 9:34PM
Hi everyone, I first want to thank you for the stories you share about your lives and loved ones on here. I was so lucky to find this website when my father was admitted to the hospital in February needing an emergency surgery for the LVAD (his heart was at 18%). I used it as research for the months that followed, as it is far more informative than what the medical professionals were able to tell me. So thank you for your honesty.
My dad passed away last week at 67 after his 3 month hospital stay, unfortunately. Initially, he went in to get an LVAD (after having hodgkins disease at 48, his heart suffering from the chemo, and then getting a pacemaker at around 60, which had to be replaced last year because the leads were leaking). Just 5 days after his LVAD surgery in February, he was rushed in to get an RVAD, as the right side of his heart became weaker, even with the LVAD (the tricuspid valve had been a problem).
I just wish that someone would invent a portrable RVAD device, much like the LVAD, so patients suffering from total heart failure can live their lives (outside of a hospital). I found that there's a SynCardia Total Artifical Heart, but it isn't as common and the doctors told us that wasn't an option in Canada. Getting a heart transplant was an option, the surgeon said, but my dad was already so weak, that the LVAD was destination surgery. And organs usually go to younger people.
The first two weeks in the hospital, my dad was mostly sleeping. Then he became more conscious and was responsive with his hands. Then, the RVAD gave him more power to do physio exercises, even walk from the hospital bed to chair. He really seemed to be on the mend, and my family had hope. But it became an emotional rollercoaster that led my dad through 7 surgeries in 3 months, from a trachestomy to a stomach infection after the nose feeding tube gave him a nosebleed, and how the first 2 times the surgeon tried to take out the RVAD in surgery, my dad's heart stopped beating (eventually it came out at month 2). I think it was a combination of a bedsore, the stomach infection and a recurring/recent pneumonia that did him in. They didn't even have to turn off the machines, he just died while the LVAD was still working, he had high lactate levels in the blood, then his blood pressure dropped to 28.
I'm sharing my story with you for two reasons:
a) If you or a loved one is going into LVAD surgery, please have your power of attorney for medical care signed and ready, as well as your will. Do this before going into surgery because when my dad came out, he was deemed mentally incapable by the nurse manager after the surgery, showing early signs of dementia and ICU delirium, so all decisions about his care was turned to his wife, who was very difficult and controlling with the rest of our family.
b) Take good care of your family member while they are in the ICU. I wrote an article about how to care for a loved one who is in an ICU with creative, uplifting things to lift their spirits (and get their mind off the sickness). Granted, I wrote this based on my experience before the pandemic, but I do hope that the ideas I outlined here, will help you somehow, after we get to a point where visitors are allowed inside of hospital ICUs again: https://www.forbes.com/sites/nadjasayej/2020/05/09/we-need-more-creativity-and-culture-in-hospital-icus/
Getting a tablet or iPad for an LVAD patient is an awesome idea. Anything to get the mind off the hospital, in my opinion.
Good luck and stay strong.