In 2019 BAF is raising awareness about Thoracic Aortic Disease through a "virtual" walk. From time to time this month we will invite you to walk along with someone with TAD, through reading their story.
Here we invite you to come and walk alongside Larry. He has an amazing story to tell, beginning at a very young age! Today he continues to live his very active, adventurous life! We hope that "walking" with him and "listening" to his story will inspire you to do the same!
Age 4 - Diagnosis, Age 11 - First Valve Surgery
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| Larry Abramson |
My BAV was discovered during a routine exam in 1959 when I was 4 years old. I was monitored every 6 months and restricted to "no sudden exertion or contact sports". But, life went on until Dec 1966 when I started having some issues with shortness of breath and actually fell while swinging on a rope hung from a tree. In Feb 1967, because of a thickening of the valve where the 3rd leafet would have been, the day after my 12th birthday, I went in to the hospital where they performed an aortic commissurotomy (opening up the valve to allow the valve to function better) but was told that the repair would probably only last about 7-8 years.
Age 20 - Second Valve Surgery
In 1975, I once again started having issues with shortness of breath and this time, at age 20, I went in and had a mechanical valve put in my heart at Bryn Mawr Hospital in PA. It was amazing to see the difference in the procedures in the 8 years since my first surgery. After the first surgery, I woke up naked, laying in an oxygen tent, on a bed of ice with the oxygen running through ice so they could bring my body temperature back up to normal very slowly. 3 days later, they finally allowed me to start eating a normal diet. This time, my body temp was already back to normal and, had I not accidentally pulled one of the drain tubes loose which collapsed my lung, I would have been back in my room the next day. From that day forward, I had a fairly normal life with no issues, and was just monitored every 6 months, though of course my Pro-time (now measured differently and called INR) was checked monthly.
Age 53 - Aneurysm Diagnosis and Third Surgery
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| Larry and Michele in NYC in 2008, 10 days after surgery! |
In 2008, I saw my cardiologist in June and was told everything was fine. In early July, I was browsing the internet and came across The Bicuspid Foundation website. While looking over the site, I found that they had recently discovered that people with BAV were developing aneurysm's in the ascending aorta. Well, I had just seen my cardiologist and he didn't seem concerned, so maybe it wasn't a big deal. But...the more I thought about it, the more concerned I became so I emailed the Bicuspid Foundation website to inquire about it. The next day, I received a message on my cell phone from Dr Sharo Raissi who was the medical advisor for the website and the Director of Thoracic Surgery at Cedar Sinai Hospital in L.A. The message said "this is my personal phone number...you need to call me...we need to talk!". Well, this was certainly disconcerting.
So, I called Dr Raissi and we discussed the fact that I had also had some hernia issues, which he explained were also connective tissue and that I should probably have an Echo or a TEE to get a baseline measurement. So, I called my cardiologist and we discussed it. At that time, he had not heard about the aneurysms but was willing to look into it. He called me back about a week later and agreed to an Echo. On July 25, 2008 I had an Echo which, according to the radiologist, revealed a 50mm (5.0cm) aneurysm in 2 places in the mid-to-distal ascending aorta. My cardiologist determined that I probably should see a surgeon, though he also admitted that there probably wasn't anyone in the Memphis area that could do it.
I saw a surgeon here, and my wife and I decided that he wasn't the one to do my surgery. So, I got copies of my films and did much research on the internet as to the best surgeons to perform this type of surgery; we sent them to a number of surgeons across the U.S. including Dr Raissi, the Mayo Clinic, Massachusetts General, Weill Cornell Medical/NY Presbyterian and a few others. Dr Raissi said that, in his opinion, the aneurysm looked to be about 5.4cm, and I got similar opinions from the other doctors.
After much discussion, we decided to go to NYC and NY Presbyterian to have my surgery done by Dr Leonard Girardi and on September 11, 2008, my aorta was repaired/replaced along with replacing the valve again because even though the original mechanical valve was working great, it was determined to be easier to put a one piece aorta and valve in vs trying to connect an artificial aorta to a mechanical valve.
Today
Now...eleven years later and 52 years after my first heart surgery, I'm still here kicking though granted, not as hard as I used to. I thought I would share this for those of you who are just finding out about your BAV, or that your child has BAV. It's a shock to find this out to begin with, but life goes on and you, or your child, can lead a normal life (yes, normal...I spent 32 years as a Federal Law Enforcement Officer, 19 years as a volunteer firefighter, I scuba dive, I rode a motorcycle for 20+ years (yeah, I know...not too smart being on Warfarin), and generally enjoy life.
Hang in there...it will get better! ~ Larry Abramson
Thank you, Larry, for sharing your life with us,
and
Creating a Climate of Hope,
~ Arlys Velebir
Bicuspid Aortic Foundation
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