Dear Valvers,
I’ve been lurking here for quite some time and read many of your heart related stories. Let me hereby take the opportunity to wish all of you the best health possible and many years of intense joy with your families, kids, and partners. Your frankness and openness has magically removed a lot of my own anxiety, since I was born with a bicuspid aortic valve stenosis. Now that I’m 31 years of age, the road in front of me appears to get rockier and some dark storms are looming in the horizon…
I was born in Holland, 1974, Europe, and the first three months of my life were great, being a good baby by keeping my parents awake at night like good babies are supposed to do. But after three months of my promising debut, I developed a serious flu and the doctor had to come over to check upon this cute little gentleman. It was at that very moment my doctor heard a “murmur”, and shortly afterwards I was diagnosed with a bicuspid aortic valve stenosis. Luckily, the stenosis was labelled “mild”, where the cardiologist remarked that I would likely develop symptoms later in life. This was good news back then, considering the various scenarios associated with bicuspid aortic stenosis.
As a kid I was fully aware of my “condition” since my mom would frequently take me to the cardiologist to check the progress of the aortic valve disease. But at the age of 21, when I was performing great at the technical university, I took my life in my own hands and decided to skip the valve checkups. Call it the burden of youth, but I felt super strong, almost immortal, and I was on a mission to proof it. Indeed, I participated in various sports events at university just to show that I could beat people: running, rowing, and cycling. There was nothing putting a brake on my momentum, and I enjoyed summers with my friends in the Alps Mountains, hiking and climbing without thinking about the stenosis. Very rarely there were times that I experienced a shortness of breath, a feeling of inhaling very cold air, for example, accompanied with some sort of pressure on the chest. Of course, I refused to connect the dots at those instances, and, looking back, I was in major denial, not even remotely acknowledging my valve issues.
There it was, March 16th 2004, the day my denial ended. Without hesitation, and to a large extent routine, I went for a run in the park. The sun was shining and I felt a chilly wind blowing, saw families with kids playing, so general happiness everywhere. There was this lovely passage in the park with overhanging trees, where the sun would show itself, intermittingly, and I could feel the little warmth on my face like a flashlight going on and off. The pond next to the path I was running on seemed like a giant mirror of bright crystals, partially blinding me. Some sort of wooziness and light-headedness annoyed me that morning but it was somehow new to me, progressively getting worse during the workout. While I was running under the trees, the flashes of sun light amplified my disorientation and lack of balance. Suddenly, something pulled me to the left, and I tried to compensate yet my body refused to respond. By the time I reached the side of the grass, a tunnel vision kicked in accompanied with viscous vertigo, some sense of nausea had announced its presence as well. For a split second I realised the gravity of the situation. I managed to find a nearby tree to latch on to, bending forward, attempting to stabilize myself. Strong dizziness remained for a couple of minutes. My heart was beating erratically, and for a moment I felled like crashing to the ground. In a panick, I decided to walk, pushing my arms up and down while getting my breathing under control. The panick and terror was quite overwhelming, and even though it was quite cold, my fear caused me to sweat profusely.
Back home I took a shower, looked in the mirror, and came to the grim conclusion that 10 years of professional and consistent denial had come to an end rather brutally. Picking up the phone that day was a little humiliating: I had created this image that I was fine, perfect, nothing to worry about, but that image got shattered and I fully enjoyed a deep sinking feeling of a proper reality check.
The cardiologist became a little upset to hear about my ten year check-up celibacy, shaking his head. After the cycling test it turned out that my blood pressure did not increase while working out, proving the advancement of the aortic stenosis. He concluded that, according to my experience in the park, toning down my sports became an absolute necessity if I wanted to reduce the risk of a total collapse with its associated risks.
Just over a week ago I had my first cardiac catherization, which was largely painless in itself. During the procedure I could watch the monitors and see what was happening, but this wasn’t particular comforting when the catheter caused my heart rate to change. When the catheter entered my left ventricle to measure the pressure drop across the aortic valve, I experienced severe arrhythmia. Now, a week later, I have returned to the gym and feel generally OK. No wooziness as of yet or shortness of breath, so perhaps my episode in the park shows that my days of heavy sports have come to an end.
At the 13th of January I have another appointment with my cardiologist to talk about the catherization results. In case my cardiologist believes operation is required, I will definitely go for a mechanical valve such as the St. Jude Regent, ATS, or On-X. These valves are top notch, and with proper INR management, I should be getting 20+ years of good performance without giving up my active lifestyle too much. When I listen to all of you, I will be given a second chance when OHS is required. I call this a blessing, not a burden.
So after this long introduction, I wish you all a lovely and enjoyable Christmas with your families. To those who experienced an OHS recently, your good health is on top of my wish list.
“Do not fear dark storms looming in the horizon, for we will learn how to sail our ships.”
Best wishes,
Dustin.
I’ve been lurking here for quite some time and read many of your heart related stories. Let me hereby take the opportunity to wish all of you the best health possible and many years of intense joy with your families, kids, and partners. Your frankness and openness has magically removed a lot of my own anxiety, since I was born with a bicuspid aortic valve stenosis. Now that I’m 31 years of age, the road in front of me appears to get rockier and some dark storms are looming in the horizon…
I was born in Holland, 1974, Europe, and the first three months of my life were great, being a good baby by keeping my parents awake at night like good babies are supposed to do. But after three months of my promising debut, I developed a serious flu and the doctor had to come over to check upon this cute little gentleman. It was at that very moment my doctor heard a “murmur”, and shortly afterwards I was diagnosed with a bicuspid aortic valve stenosis. Luckily, the stenosis was labelled “mild”, where the cardiologist remarked that I would likely develop symptoms later in life. This was good news back then, considering the various scenarios associated with bicuspid aortic stenosis.
As a kid I was fully aware of my “condition” since my mom would frequently take me to the cardiologist to check the progress of the aortic valve disease. But at the age of 21, when I was performing great at the technical university, I took my life in my own hands and decided to skip the valve checkups. Call it the burden of youth, but I felt super strong, almost immortal, and I was on a mission to proof it. Indeed, I participated in various sports events at university just to show that I could beat people: running, rowing, and cycling. There was nothing putting a brake on my momentum, and I enjoyed summers with my friends in the Alps Mountains, hiking and climbing without thinking about the stenosis. Very rarely there were times that I experienced a shortness of breath, a feeling of inhaling very cold air, for example, accompanied with some sort of pressure on the chest. Of course, I refused to connect the dots at those instances, and, looking back, I was in major denial, not even remotely acknowledging my valve issues.
There it was, March 16th 2004, the day my denial ended. Without hesitation, and to a large extent routine, I went for a run in the park. The sun was shining and I felt a chilly wind blowing, saw families with kids playing, so general happiness everywhere. There was this lovely passage in the park with overhanging trees, where the sun would show itself, intermittingly, and I could feel the little warmth on my face like a flashlight going on and off. The pond next to the path I was running on seemed like a giant mirror of bright crystals, partially blinding me. Some sort of wooziness and light-headedness annoyed me that morning but it was somehow new to me, progressively getting worse during the workout. While I was running under the trees, the flashes of sun light amplified my disorientation and lack of balance. Suddenly, something pulled me to the left, and I tried to compensate yet my body refused to respond. By the time I reached the side of the grass, a tunnel vision kicked in accompanied with viscous vertigo, some sense of nausea had announced its presence as well. For a split second I realised the gravity of the situation. I managed to find a nearby tree to latch on to, bending forward, attempting to stabilize myself. Strong dizziness remained for a couple of minutes. My heart was beating erratically, and for a moment I felled like crashing to the ground. In a panick, I decided to walk, pushing my arms up and down while getting my breathing under control. The panick and terror was quite overwhelming, and even though it was quite cold, my fear caused me to sweat profusely.
Back home I took a shower, looked in the mirror, and came to the grim conclusion that 10 years of professional and consistent denial had come to an end rather brutally. Picking up the phone that day was a little humiliating: I had created this image that I was fine, perfect, nothing to worry about, but that image got shattered and I fully enjoyed a deep sinking feeling of a proper reality check.
The cardiologist became a little upset to hear about my ten year check-up celibacy, shaking his head. After the cycling test it turned out that my blood pressure did not increase while working out, proving the advancement of the aortic stenosis. He concluded that, according to my experience in the park, toning down my sports became an absolute necessity if I wanted to reduce the risk of a total collapse with its associated risks.
Just over a week ago I had my first cardiac catherization, which was largely painless in itself. During the procedure I could watch the monitors and see what was happening, but this wasn’t particular comforting when the catheter caused my heart rate to change. When the catheter entered my left ventricle to measure the pressure drop across the aortic valve, I experienced severe arrhythmia. Now, a week later, I have returned to the gym and feel generally OK. No wooziness as of yet or shortness of breath, so perhaps my episode in the park shows that my days of heavy sports have come to an end.
At the 13th of January I have another appointment with my cardiologist to talk about the catherization results. In case my cardiologist believes operation is required, I will definitely go for a mechanical valve such as the St. Jude Regent, ATS, or On-X. These valves are top notch, and with proper INR management, I should be getting 20+ years of good performance without giving up my active lifestyle too much. When I listen to all of you, I will be given a second chance when OHS is required. I call this a blessing, not a burden.
So after this long introduction, I wish you all a lovely and enjoyable Christmas with your families. To those who experienced an OHS recently, your good health is on top of my wish list.
“Do not fear dark storms looming in the horizon, for we will learn how to sail our ships.”
Best wishes,
Dustin.
Some of us here are nearing 30 years and one over 30 years.
