J
Jack9
My first surgery at age 2 was an attempt to repair a perforated aortic valve.
My first memory is of being wheeled into the pre-op theater when I was 2 and my mother crying and her exact words. They noticed what might develop into a descending aortic stenosis as I grew.
At age 9 I was implanted with a 21mm Bjork-Shiley. The descending aortic stenosis was not deemed critical.
Prior to leaving the hospital
- I promised myself I would NEVER have the valve replaced, due to the trauma which I still remember vividly from THAT surgery.
- I experienced intermittent but very noticeable atrial fibrillation from 2-10 seconds at a time which went down in frequency to once a month or so.
- I had an abnormal craving for liquids
After leaving the hospital
- I won a 25-mile tri-city marathon. My sole sports-related trophy. A massive increase in energy and endurance, is probably not that unusual and was kind of cheating.
- I noticed I never got headaches anymore. Decades later I would find I would ONLY get them with fevers over 103 or if I was poisoned or had a massive allergic reaction. I often wondered if I was unique in this regard.
Due the trauma of the surgeries or other environmental conditions (including the looming threat that the valve would need replacing at 25) I stopped taking coumadin at all for over a decade (one of the many methods I attempted to kill myself). I suffered a small stroke at age 14 (not a surprise) which did not deter me much since I was able to hide it. I met my first girlfriend who was one of the few people with McCune Albright's Syndrome and taught myself to program while working at a restaurant and staying with her and her mom. I also picked up my first ferret. I eventually got a job in Santa Cruz, cut ties and moved there for nearly a decade.
At age 25 I attempted to get back on the horse, to pony up, and see how critical the predicted valve replacement was. The doctors assured me that I would live another 10 years without needing a replacement at my current lifestyle. That wouldn't do. I began abusing alcohol, got arrested plenty, 5150d, etc then went catatonic after recovery for some time until I engaged in some significant therapy and mood stabilizing drugs. I then developed a benign cyst on my skull. Looked like a cartoon bump. After resection of the cyst, I went on to find gainful employment and smoked a lot of pot while taking my coumadin. I was relatively happy for about 3 years during which I skydived, I went into respiratory arrest due to Tetracycline allergy (see the tv show 'Monk'). I met my second girlfriend (someone I had a relationship with) who was slightly age-inappropriate but who holds people to a higher standard. I was forced to stop the drugs, get a job where I wear a suit, and re-move out of my parents'.
I turned 29 and had always been thin, but I started on a cardio routine with the explicit goals of
- Make myself feel better
- Increasing the differential pressure on the valve to force an earlier replacement
- Make my girlfriend happier
At age 30 I engaged in personal training 5 times a week. I trained to my last ounce every session. I loved the soreness, I loved the challenge. I loved the feeling I missed out on as a kid. I cut out my drinking completely. Charting my progress, I made substantial initial gains but over a year my energy was declining and my back muscles were too big to be supported by the valve (I would nearly pass out or would just throw up or whatever). I scaled back my training to 4 then 3 switching in 1 or 2 drinking nights, and switched training to morning and everything seemed fine (other than the slow gradient decline in performance) until July 3rd, 2008 when I was 32. I went into a prolonged tachycardia for 9 hours at a heart rate of about 180 which could not be brought down with drugs. After giving me the paddles, I was diagnosed I was diagnosed with a very high gradient, along with significant hypertrophy (CHF).
I took a business trip to England for 2 weeks, until August 5th where I had my last beer.
I was scheduled for surgery (rescheduled over and over) November 3, 2008. I entered a state of paralyzing dread. I took off a month of work prior. During the procedure, my surgeon+assist selected the 23m ON-X (which I had never heard of) over the St. Jude, corrected an ASCENDING aortic root abnormality, and resected some of the left ventricle tissue using ross-konno. Recovery was bad, but not that bad. I was pissed at the choice in valve as I thought I had some control over what was going on with me. I was very happy to hear that the descending aortic root abnormality had grown out to sufficient size, that I suffered no heart stoppage, no detectable shunting, no known infarction and the valve was operating cleanly. My body was in too good a shape during my stay in the hospital allowing me to go home quickly (10 days. Still felt like a month).
I am now in recovery at home. I do not feel any pain (excepting chest expansion bone pain when I cough or sneeze at the REAL SUNLIGHT). I get very weak pretty quickly. This should improve. My father alerted me to this website. It feels good just to put it down. My story is atypical, but others may find parallels or even lessons here.
- I don't care what ON-X says, a warafin free lifestyle is a bad idea with a mechanical valve.
- Surgery has progressed a long way. It may be a combination of bad life experiences, age, and/or increased physical awareness and understanding of my body, but this surgery seemed much easier. Didn't have to spend 5 days in ICU like the old days to recover from anesthesia.
- Physical conditioning gives usually steers you toward a healthy lifestyle not contact sports. As my doctor told me when I was 10, "you and me put all that work and suffering into getting that valve in and now you want to what? Risk it's kicked loose in a dogpile so you can die on the field during a pickup game?". He had a way with words.
- Caffeine is bad. Some people think this means soda is bad. I don't believe that. A chemically separate entity which is much more expensive and took me years to figure out is fountain sodas (even Coke, if a chemist can verify). Very similar to sprite (corn syrup, carbonated water, and flavoring but with coloring!) helped me drop a caffeine and candy addiction.
But that's just me for the last 8 years. What do I know.
My first memory is of being wheeled into the pre-op theater when I was 2 and my mother crying and her exact words. They noticed what might develop into a descending aortic stenosis as I grew.
At age 9 I was implanted with a 21mm Bjork-Shiley. The descending aortic stenosis was not deemed critical.
Prior to leaving the hospital
- I promised myself I would NEVER have the valve replaced, due to the trauma which I still remember vividly from THAT surgery.
- I experienced intermittent but very noticeable atrial fibrillation from 2-10 seconds at a time which went down in frequency to once a month or so.
- I had an abnormal craving for liquids
After leaving the hospital
- I won a 25-mile tri-city marathon. My sole sports-related trophy. A massive increase in energy and endurance, is probably not that unusual and was kind of cheating.
- I noticed I never got headaches anymore. Decades later I would find I would ONLY get them with fevers over 103 or if I was poisoned or had a massive allergic reaction. I often wondered if I was unique in this regard.
Due the trauma of the surgeries or other environmental conditions (including the looming threat that the valve would need replacing at 25) I stopped taking coumadin at all for over a decade (one of the many methods I attempted to kill myself). I suffered a small stroke at age 14 (not a surprise) which did not deter me much since I was able to hide it. I met my first girlfriend who was one of the few people with McCune Albright's Syndrome and taught myself to program while working at a restaurant and staying with her and her mom. I also picked up my first ferret. I eventually got a job in Santa Cruz, cut ties and moved there for nearly a decade.
At age 25 I attempted to get back on the horse, to pony up, and see how critical the predicted valve replacement was. The doctors assured me that I would live another 10 years without needing a replacement at my current lifestyle. That wouldn't do. I began abusing alcohol, got arrested plenty, 5150d, etc then went catatonic after recovery for some time until I engaged in some significant therapy and mood stabilizing drugs. I then developed a benign cyst on my skull. Looked like a cartoon bump. After resection of the cyst, I went on to find gainful employment and smoked a lot of pot while taking my coumadin. I was relatively happy for about 3 years during which I skydived, I went into respiratory arrest due to Tetracycline allergy (see the tv show 'Monk'). I met my second girlfriend (someone I had a relationship with) who was slightly age-inappropriate but who holds people to a higher standard. I was forced to stop the drugs, get a job where I wear a suit, and re-move out of my parents'.
I turned 29 and had always been thin, but I started on a cardio routine with the explicit goals of
- Make myself feel better
- Increasing the differential pressure on the valve to force an earlier replacement
- Make my girlfriend happier
At age 30 I engaged in personal training 5 times a week. I trained to my last ounce every session. I loved the soreness, I loved the challenge. I loved the feeling I missed out on as a kid. I cut out my drinking completely. Charting my progress, I made substantial initial gains but over a year my energy was declining and my back muscles were too big to be supported by the valve (I would nearly pass out or would just throw up or whatever). I scaled back my training to 4 then 3 switching in 1 or 2 drinking nights, and switched training to morning and everything seemed fine (other than the slow gradient decline in performance) until July 3rd, 2008 when I was 32. I went into a prolonged tachycardia for 9 hours at a heart rate of about 180 which could not be brought down with drugs. After giving me the paddles, I was diagnosed I was diagnosed with a very high gradient, along with significant hypertrophy (CHF).
I took a business trip to England for 2 weeks, until August 5th where I had my last beer.
I was scheduled for surgery (rescheduled over and over) November 3, 2008. I entered a state of paralyzing dread. I took off a month of work prior. During the procedure, my surgeon+assist selected the 23m ON-X (which I had never heard of) over the St. Jude, corrected an ASCENDING aortic root abnormality, and resected some of the left ventricle tissue using ross-konno. Recovery was bad, but not that bad. I was pissed at the choice in valve as I thought I had some control over what was going on with me. I was very happy to hear that the descending aortic root abnormality had grown out to sufficient size, that I suffered no heart stoppage, no detectable shunting, no known infarction and the valve was operating cleanly. My body was in too good a shape during my stay in the hospital allowing me to go home quickly (10 days. Still felt like a month).
I am now in recovery at home. I do not feel any pain (excepting chest expansion bone pain when I cough or sneeze at the REAL SUNLIGHT). I get very weak pretty quickly. This should improve. My father alerted me to this website. It feels good just to put it down. My story is atypical, but others may find parallels or even lessons here.
- I don't care what ON-X says, a warafin free lifestyle is a bad idea with a mechanical valve.
- Surgery has progressed a long way. It may be a combination of bad life experiences, age, and/or increased physical awareness and understanding of my body, but this surgery seemed much easier. Didn't have to spend 5 days in ICU like the old days to recover from anesthesia.
- Physical conditioning gives usually steers you toward a healthy lifestyle not contact sports. As my doctor told me when I was 10, "you and me put all that work and suffering into getting that valve in and now you want to what? Risk it's kicked loose in a dogpile so you can die on the field during a pickup game?". He had a way with words.
- Caffeine is bad. Some people think this means soda is bad. I don't believe that. A chemically separate entity which is much more expensive and took me years to figure out is fountain sodas (even Coke, if a chemist can verify). Very similar to sprite (corn syrup, carbonated water, and flavoring but with coloring!) helped me drop a caffeine and candy addiction.
But that's just me for the last 8 years. What do I know.
