About Me (In My Own Words)
I am 38 years old and found out about my condition about 1 month ago. This is an odd position to be in for me because by profession I am usually the one helping others.
My journey started during my annual physical last month. Two days prior to my physical, my father was admitted to the hospital due to chest pain and underwent his 15+ angiogram. This one did not go as smoothly as all the previous angiograms and thankfully he is still enjoying life with me. Needless to say, it made me question my own mortality. During my physical, I asked the doctor if he would prescribe a stress test to gather baseline data. Since he had heard a murmur during a previous visit and he knew of the significant family history of heart disease, he agreed that it was a smart idea to conduct a stress test and an echocardiogram so I would have a baseline for later in life.I setup an appointment to have the tests conducted the following Saturday. Between seeing my doctor and having tests, I started to recall a recent visit to the gym where I had some pretty bad jaw pain within the first ten minutes of working out that only went away with rest which I chalked up as 'being out of shape'.
The day of my stress test and echo arrived and I was excited to experience the tests my father and grandmother had told me about over and over again when I was growing up. I had one goal in mind....I was going to go longer than my father ever did on the treadmill. My parents went with me for the tests since we are a very close knit and supportive family. I was called back to have the echo done first. It seemed like a simple enough test and assumed it would go without a hitch because everyone kept telling me how younger and in shape I was ( I did appreciate the compliments and know they were well intended). This was one of those times my training as a psychologist worked against me. The whole time I was on the table, The technician's rate of breathing had abrupt changes followed by quick key strokes on the testing device. He would then ask my age and if I was a smoker. At another point he asked me to repeated why I was there and if I had any symptoms followed by him hemming and hawing. It was at that point I knew something was not right. I then went back to the waiting area where my parents tried to reassure me that the test results would come back normal. I then went for the stress test. Once again, multiple people told me how young and in shape I was and they did not think I would have any problems. Other than pain in my jaw after getting off the treadmill, everything went very well. The cardiologist in the room told me everything looked great and then handed me a brochure for his private practice.
At 7:30am that Monday, on my way to work, I received a phone call from my primary doctor. He got straight to the point, as we had previously agreed he would do, and told me he wanted to give me the results as soon as possible after he spoke to the cardiologist that administered my stress test. He explained that my aortic valve was leaking and I would need to see a cardiologist, thoracic surgeon, and most likely I would need surgery in the next 24-48 hours. He went on to tell me that the urgency was because he thought I had small tears in the arotic artery that were causing my jaw pain. He then went on to tell me if those small tears became any bigger, the outcome could be 'catastrophic'. Normally, my primary is ultra conservative with his treat plans so I was highly alarmed by the information he shared.
Lesson #1- if your doctor tells you that you need to see a cardiologist, thoracic surgeon, and possibly have open heart surgery in the next 24-48 hours, ask to be admitted to a hospital because this is an impossible task to do on your own.
I will now fast forward and summarize my experience since that date in time. It took almost 1.5 weeks from that phone call to learn my aorta was not at-risk, but it was swollen yet within normal limits. This provided me some time to explore my options for what was being diagnosed as BAVD with Severe Regurgitation with symptoms (agina).
I have now had two cardiologists and one surgeon examine me directly and they all recommended that I need the arotic valve repaired or replaced sometime soon. As the
last cardiologist told me, I could wait to have the surgery but that means I cannot do anything until the surgery is done. I have also had another surgeon review my records and agree that surgery is needed. I have yet to learn if the arotic root will be altered in any way shape or form.
My last consult was done at the Cleveland Clinic with Dr. Stewart. He initially said he could not get me in until January or February for the surgery, but then suggested he would try to negotiate a surgery sooner due to my schedule, goals, and deadlines. I received a call three days later telling me I would have surgery on December 11th and I would need to go for presurgical testing and meetings on the 10th.
What type of surgery? I will know more on the 10th after I talk to Dr. McCurry, the thoracic surgeon. Based on my discussion with Dr. Stewart, they would attempt a minimally invasive technique and use a tissue based valve. He initially recommended a mechanical valve, but he realized that might not be an option due to my strong desire to stay active in higher risk sports (snowboarding to be exact). I do not want to be on blood thinners the rest of my life yet. Also, they were waiting on some films from my local hospital before they could comment about the need for modifications to my aorta.
Throughout this whole experience, my girlfriend Justine has been amazing! She has been critical and supportive at the right times. In partnership with my parents, she has been doing research and preparing for the events to come.
What are these goals and deadlines I spoke of earlier? Well, I am an avid snowboarder and ride 20-30 days a years competitively, coaching, and for leisure. To me, snowboarding is as much part of life as eating breakfast in the morning. Justine and I have a trip to Mt. Baker and Whistler planned at the end of December. It is there that I planned to take Justine on her first backcountry catboarding adventure on January 1st. The second goal starts with a childhood dream/goal I set for myself. I read a magazine article about the Mt. Baker Banked Slalom, now called the Mt. Baker Legendary Banked Slalom, and was put in aww by the caliber of competitors and the pure love of the sport the event brought out. I told myself that one day I would get invited to the event. Well, on November 5, I received an invitation from the event organizers saying I was invited to compete in the event on February 8&9, 2013. This, in addition to family and friends, is now my motivator to recover quickly. I do not care if I am only able to scrap down the course as long as I am able to be part of this event.
My surgery is just over two weeks away and I have experienced excitement, sadness, anxiety, depression, joy, and many other emotions. I keep myself doing what I would normally be doing minus any exertion. I goto work, I play with my dogs, enjoy life with Justine, and spend time with family. Out of everything, I am most fearful of the recovery and the unknowns. I guess one could also say I am uncomfortable with the parts I am unable to have any control over. So, I am excited for the surgery yet the recovery could wait.
More Info About Me & My Heart
More About Me
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I am from:
Chicago, Illinois
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My surgery date is:
December 11, 2012
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I was diagnosed with:
Aortic Regurgitation
Bicuspid Aortic Valve
Aortic Aneurysm
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My surgery was:
Aortic Valve Repair
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My hospital is:
Cleveland Clinic
