About Me (In My Own Words)
What is my story? My story is just beginning.
I've known of my heart murmur since I was a young child. When I would go to my primary care physician, if she or he had residents, they would all listen to my heart in order to hear the murmur. In October of 2015, I went to the ED concerned I was having a heart attack. Thankfully, (I guess?) it was actually a-fib. At this time, I was told that I have a bicuspid aortic valve, which had been causing the murmur. Over the course of two years, I saw a cardiologist in my hometown (more like saw his PA often, and him rarely).
I was then introduced to a doctor who specialized in cardiac ablation surgery. I had the procedure and for the most part, my a-fib has not returned. (There are times I've felt like maybe it's starting, but a quick cough and it immediately feels as if my heart returns to it's regular sinus rhythm).
After the surgery, my aortic root measured 3.8 cm in diameter and I was told that it would need to be monitored as it would likely grow in size. I had hoped it would take longer, but over the last two years it has grown to 5.2 cm and it was finally given a name - ascending aortic aneurysm. After researching, I've requested referrals to three surgeons in order to see who will be a good fit.
When I was given the diagnosis a few days ago, I immediately began looking around the internet to find out what all of this would entail. Of course, I ran across the Swedish study and read the overviews and what I came out with shocked and scared me. I'm 50 years old, and after a valve replacement surgery, I could potentially expect to live another 10 years. I spent most of that day in shock, sometimes crying, sometimes just in a fog.
For all intents and purposes, 2021 was simply continuing along 2020's awful path. 2020 had seen lock down for the good part of the year, learning to work remotely (I work full time for a University), trying to manage new ways to support the business we'd just bought in November of 2019 - switching things over to online purchases and shutting down for 6 weeks then trying to regain business (my wife and I own a paint and sip/ceramics business - quite literally one of the most "social" businesses one could own in the middle of a pandemic that requires less social and more distance).
The new year came and I had hope. I cried when the first UPS and FedEx trucks carried loads of the new vaccine, knowing that there was finally a light at the end of this dark and awful tunnel. Then on January 28, 2021, my world crashed around me when my son passed away at the age of 26. I won't spend much time on that because I'm simply unable to do so.
And finally, the news of my heart. After my son died, my heart had felt shattered. Now, I knew that it was, quite literally, broken.
The thought of only living another 10 years shook me deeply. 60 years old. I wouldn't even be of retirement age! So I sat with my wife, talked about quitting my job and pulling all of my money from retirement so that we could spend that ten years making as many memories as possible, checking off bucket list items became much more important than working to make money. Checking to ensure that life insurance was in place for the next ten years, and finally, calling an attorney in order to set a time to set up a will - something we both knew was long overdue.
Then I came across this site. I began reading. There was a glimmer of hope. I saw the article about Arnie and his 3rd surgery to re-replace his valve and how well he was doing. I saw posts from others who'd lived beyond that 10 year mark. I saw Adam's story and now I'm reading through many of the stories here in the community area. My hope is that this will be a new lease on life. I know that without a valve repair or replacement and repair of my aorta, my life expectancy will be pretty short. So as I begin this journey, I'm thankful to have found this site, because it gives me some hope. You all give me hope. Hope that I'll have the best years to come with my wife. With my daughters and my two stepsons and with my amazing granddaughter. (Yes, that's her in my photo. :) ) I have hope that I can begin the process of getting my body into shape for this surgery, and continuing to take care of this body after the surgery.
One thing remains the same. I glimpsed into a chasm of despair when I began this journey and I made a decision to live life for the 10 years I hoped I might get post procedure. The hope I've once again found after reading the stories and articles on this site has not changed this. Once the proper course of action is decided upon with the appropriate surgeon and his/her team and once the procedure is finished and I am on the path to recovery - I am going to live life and make memories whether it be for 10 years, 15 years, 20 years or even more.
The lesson I was shown when my son died was that life is too short and now this lesson has been burned into my soul. Dance to the music with no regard to what others may think. Eat the food. Drink the drinks. Make the memories.
Thanks for reading.
Well, things went really well. It's June 2, 2022, I had my open heart surgery in October of 2021 and all things went very well. There was only a need to replace my failing aorta. My biscuspid valve looked to be in very good shape, no mitosis and very little regurgitation if any, so the decision was made by my cardiologist during surgery not to replace my valve. Eventually, I'm sure I'll need it replaced, but for now all is good.
I plan to do a detailed update to this, which will provide more insight into the procedure and other details about my recovery because I think there are some important things I should share with all of you.
Thanks again for reading.
More Info About Me & My Heart
More About Me
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My surgery date is:
October 26, 2021
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I was diagnosed with:
Bicuspid Aortic Valve
Aortic Aneurysm
Atrial Fibrillation
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My surgery was:
Aortic Aneurysm Replacement
Maze Procedure
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My surgeon is:
Dr. Gregory Muehlebach