I has active here for a bit in 2010 but got lost along the for the past dozen years. I am 63YO Male on my 4th AVR (completed March 2021). I was born with a Bicuspid Aortic Valve and was sideswiped in 1992 by Endocarditis.
Between all these Valve replacements, I've worked, raised a family, Backpacked 1/3 of the Appalachian trail, climbed many mountains (ADK46re) and probably road biked at least 15,000-18,000 miles. I was on Warfarin for over a decade and am now on Xarelto. I'd love to offer support to anyone who finds themself facing down a heart surgery. Please reach out to me at
[email protected] or here on the forum.
More about my history...
#1. My first AVR was Jan 2002 with a "stentless" Toronto Procedure (Dr. Garzia) at St. Lukes Bethlehem, which went well until my aorta burst in day 1 of step down, leading to emergency surgery to repair the aorta, which during the surgery, caused the new valve to partially unseat. Woke up to find that my nurse for the next 2 nights was none other than Charles Cullen the (later) convicted Angel of Death. I vividly remember him for holding my fentanyl and dilaudid from me as I writhed in pain for hours, Feedly yelling "Charlie Please Help Me!?!?!".
#2 I had a Redo with a St. Judes Mechanical valve at by the great Dr. Sary Aranky Brigham-Womens in 2006 due to severe regurgitation. The surgery was not uneventful. The Heart Lung Cannula in my femoral artery, tore out during surgery requiring and emergency stitch up and inserting into the other Femoral artery, prolonging surgery by a few hours. the rest was uneventful, and I was fine for the next 4 years.
#3 in 2010 I was again hit with sepsis and endocarditis and ended up with an aortic aneurysm. I went back to Brigham Womens and Dr. Aranky. I had a new Aortic Mechanical Valve placed in me, but when I came off Heart & Lung machine the new stitching between the valve and aorta was leaking badly. After some quick conferencing, my body was chilled down and plans were made to cut out my aorta from the heart to the Arch and replace with a synthetic Kevlar aorta and re-attach the new mechanical valve. The entire surgery lasted 21 hours. I was fine for the next decade.
In early 2019, I started having swollen legs, constant cough and continual gout. After seeing a several different specialists, we realized that my Ejection Fraction down in the low 30's, I was in AFIB and aggravating my Vagas nerve and I was holding a lot of water weight. Much was solved by January 2020 with the addition of a pacemaker and going on diuretics. This was fine until 2021.
January 3, 2021. While working that morning, my hands started shaking uncontrollable and I couldn't control my bladder. I laid down on a towel and plastic bag underneath, not knowing what was wrong. When my wife came home, she took one look, and I ended up in the ER - Sepsis and a minor embolism I was discharged after several weeks only to have to rush back to the hospital a week later after a Echo TTE picked up an aortic abscess. I stayed at the hospital for several days until a bed opened up at UPENN and was taken there by Ambulance (Now Late February).
#4 Late February 2023. I was presented at UPENN with a massive amount of thoracic adhesions/scarring from previous surgeries and told that my chances of a successful AVR were not the best, but they would do whatever they could. Over the next few days, I wrote goodbye letters to my children, wife, coworkers, friends and family. A difficult thing to do, as I prepared for surgery. The surgery took 3 days total. According to my surgeon and my wife, (and as best as I can explain while viewing the surgeon's notes) I was opened up and chilled down overnight as they had to drain the massive amount of excess fluid in my body prior to the actual operation. They also found the Aortic valve was "dehisced" from the aortic root, which was also torn from the heart and that the massive amount of scarring in my chest cavity caused the blood to be forced up through my aorta and into my body. The surgeon told me he had never seen anything like it and could not understand how I could have survived with this tear, since this is something that happened slowly. I was told they fashioned a new Aortic Root out of a bit of heart muscle and had me sewed up by days 3. I was in ICE for the next 3 weeks where I also received a new pacemaker and promptly got Pneumonia and needed a Tracheostomy, thereby extending my stay in the ICU. I was finally discharged in early April to Inpatient rehab in a wheelchair where I spent the next few weeks learning to walk (Shuffle) until I was well enough to go home late April 2021.
If you have read this far, I am doing fine. I was back to work by Mid-June 2021. I am back t the gym - lifting weights, but not overdoing it and I am back to bicycling 10-15 miles 4-5 days a week.
One thing I will say about the last hospital stay was the amount of hallucinations and dreams I had while strapped in an ICU bed all those weeks.
Anyway, I am happy to be alive and hopefully can help out others who are looking at heart surgery or have symptoms/questions.
Thank you for reading.
