Prior to my open-heart surgery in 2004, I like you, was in great shape. Lean, avid bicyclist, Tae Bo and Spinning instructor and very successfully climbing the "corporate ladder". Several years earlier, I had been diagnosed with an TAA, that was enlarging, and was being monitored very closely with MRIs, CTs and echocardiograms. I was feeling great, riding very strong and working out at very high levels while taking Metoprolol and "watchfully waiting".
Sometime in 2003 came the bad news. The latest imaging showed my aorta was dilated 5.3 cm at the root. All my medical advisors were telling me this was getting serious and I needed to plan for surgery. Why, I said. I feel great! I did, however, continue to do my own "homework" on TAAs and researched the recommended timing of surgical intervention. Fortunately, I got matched up with a wonderful doctor (Curt Daniels) and his physician's assistant (Elizabeth Sparks) at The Ohio State University. At Ohio State, I was clinically diagnosed (no genetic tests at that time) as Marfan Syndrome. I continued to bicycle and workout at very high levels, pushing myself to the limit. I did, however, begin to interview thoracic surgeons.
By Spring of 2004, the CT and MRI imaging was showing that I was dilated between 5.4 and 5.5 cm. Based on the leading researchers, it was time for surgical intervention. After interviewing several more surgeons, I selected Dr. Lars Svensson at The Cleveland Clinic. I cannot stress enough how important it was to interview potential surgeons and be my own best advocate.
On July 12, 2004, at 43 years of age, I had my surgery at The Cleveland Clinic. Dr. Lars Svensson performed the modified David procedure. Our plan was to spare the aortic valve (with a little remodeling) and place a composite graft. Due to my excellent preoperative physical condition, Dr. Svensson was willing to keep me on the table longer in order to remodel and then re-implant the aortic valve. When they opened me up for surgery, they found that I had tears in the non-coronary and right coronary sinuses of the valsalva and that the aortic tissue above the aortic annulus was very thin and consisted only of the adventitia (the outer most covering of an organ). Following the surgery, Dr. Svensson told my wife and parents that I was "ready to blow" (dissect) and that I was "very lucky". The operation went as planned with the aneurysm repaired, graft implanted and the native valve spared.
Following my surgery, I did struggle a bit in ICU with a bleed (they gave the order to set back up the OR), I went into anaphylactic shock (while my family was surrounding me) due to an allergic reaction to the blood products they were giving me (whole blood and platelets). I also had some post surgical arterial fibulation that was controlled with mediation and has not been an issue since. Fortunately, I did not have to be taken back to surgery as the bleed resolved. I vividly remember thinking that I couldn't make it through another surgery. This was very frightening to me.
Recovery was a long road, both physically and emotionally. The surgery had really knocked me for a loop! I have had some significant surgeries in the past, but this one was over the top. Often the pain was more than I could bear. I was happy to have survived, but at the same time depressed and anxious. As I began to heal, I was able to focus on getting back to the level of physical condition that I had been in prior to the surgery. The physical activity, family and friends kept the depression and anxiety in check.
This was a life changing event for me. Within 7 months of my surgery, I had resigned from my director's position as a strategic and market planner in a fortune 200 company and moved from Columbus, Ohio to a small mountain community in Colorado. I continued my rehab with several goals in mind. These goals were and still are; to appreciate each and every day as a gift, to love and cherish family and friends, to passionately pursue only what gives you joy, to giveback and pay-forward when ever I can and to live life alive!
I, like you, did have a shorter term physical goal in mind as well. This goal was to celebrate the one year anniversary of my open-heart surgery by bicycling one of the toughest century rides in Colorado, the Triple Bypass. This one day ride covers 122 miles over three mountain passes (Squaw, 11,140'; Loveland, 11,990'; Vail, 10,560') with over 10,600 feet of climbing. By July of 2005, completing the Triple Bypass was a reality for me! As I climbed the mountain passes I often had tears in my eyes realizing how far I had come and and how fortunate I had been, yet knowing I still had a long way to go. It was amazing!
I will be 50 years "young" in January and I am six years post surgery with a stable aorta. In 2011, my path includes; keeping true to my goals (see above), bicycling competitively with a racing team, helping to get a local network of the National Marfan Association launched here in Colorado, continuing my business pursuits and continuing to understand the challenges of, and seek solutions to, the postsurgical/ongoing care in the athletic patient with aortic disease.
Yet this year, I will be pursuing genetic testing as I apparently do not fit "neatly" into the current Marfan Syndrome nosology. The genetic testing, I believe, will help me better understand my ongoing risk and medical management (imaging, medication, etc.). I also believe that athletes like us who have aortic disease can contribute to research. After all, most medical advisors would have us severely limiting our aerobic based athletic pursuits.
Benjamin, this is a great website. It's nice to write this it all out and share it with people who can relate to where I have been and the way I choose to live my life.
All the best to you. I look forward to sharing and participating as time goes on.