The Article
Only 13 days until I have open heart surgery...
When I was growing up, I saw a cardiologist annually. I'd have chest X-rays, EKGs, exercise tests, and the whole works every year.
The last pediatric cardiologist I saw when I was 18 told me that I had the best recovery of any Tetralogy of Fallot patient he had ever seen. So I didn't see a cardiologist for a few years.
When I was pregnant with Will, my mom urged me to see a cardiologist. (Thanks, Mom.) I had an echocardiogram (like an ultrasound of your heart) done on me, and a fetal-echocardiogram done on Will. (Incidentally, that was also the day we found out we were having a boy. "Oh," was our reaction. And Will's heart was fine.)
That cardiologist told me that my heart was fine and that I didn't need to see another cardiologist for 10 years. Ten years?! BONUS! No X-rays, needles, or electrodes sticking to my chest for 10 years?! WOO-HOO! I felt like I had won the lottery.
During that blissfully cardiologist-free 10 years, I had the normal illnesses and health problems. I developed asthma when I was 26. That was the major thing I dealth with. That and allergies.
Fast forward to December of 2004.
At my annual appointment with my doctor, I mentioned that it's been about 10 years, and I should probably see a cardiologist. She ordered an echocardiogram for me. My doc told me that depending on those results, she would recommend or not that I see a cardiologist. Sounded good to me.
I had the echo (which took about an hour). Travis the echo tech kind of had a running commentary going while he was doing the echo. It sounded like everything was fine. So I waited for my results. And waited. They never came - I never got a phone call or anything. So naturally I figured that no news was good news. It's what anyone would do, right? Right?
A year later (this past January 24, to be exact), I happened upon an article on cnn.com about childhood heart repairs and how they aren't a cure and may not last. WHAT?!
In the article, a woman who had the same heart defect as me (Tetralogy of Fallot) was profiled. She had to have her pulmonary valve replaced while she was in her early 30s. They outlined her symptoms before the surgery: fatigue, shortness of breath while going up stairs and exercising, swollen ankles and feet). I had all of these symptoms and had for a year at least. But I thought I was just overworked, out of shape, and getting fat. (Hey, wouldn't everyone had thought that?)
In the article, the vice president of the Adult Congenital Heart Association was quoted. Adult Congenital Heart Association? There was such a thing? I researched them and found a great online community, whose members were people like me. They urged me to find a cardiologist who specializes in adults with congenital heart defects. I did some more research and found that the Mayo Clinic (which is about 2 hours from me) has an Adult Congenital Heart Disease Clinic. Well, whaddya know?
Before doing anything, I went to my already scheduled appointment with my doctor that Friday. And what I found out scared the crap out of me.
To be continued...
When I was growing up, I saw a cardiologist annually. I'd have chest X-rays, EKGs, exercise tests, and the whole works every year.
The last pediatric cardiologist I saw when I was 18 told me that I had the best recovery of any Tetralogy of Fallot patient he had ever seen. So I didn't see a cardiologist for a few years.
When I was pregnant with Will, my mom urged me to see a cardiologist. (Thanks, Mom.) I had an echocardiogram (like an ultrasound of your heart) done on me, and a fetal-echocardiogram done on Will. (Incidentally, that was also the day we found out we were having a boy. "Oh," was our reaction. And Will's heart was fine.)
That cardiologist told me that my heart was fine and that I didn't need to see another cardiologist for 10 years. Ten years?! BONUS! No X-rays, needles, or electrodes sticking to my chest for 10 years?! WOO-HOO! I felt like I had won the lottery.
During that blissfully cardiologist-free 10 years, I had the normal illnesses and health problems. I developed asthma when I was 26. That was the major thing I dealth with. That and allergies.
Fast forward to December of 2004.
At my annual appointment with my doctor, I mentioned that it's been about 10 years, and I should probably see a cardiologist. She ordered an echocardiogram for me. My doc told me that depending on those results, she would recommend or not that I see a cardiologist. Sounded good to me.
I had the echo (which took about an hour). Travis the echo tech kind of had a running commentary going while he was doing the echo. It sounded like everything was fine. So I waited for my results. And waited. They never came - I never got a phone call or anything. So naturally I figured that no news was good news. It's what anyone would do, right? Right?
A year later (this past January 24, to be exact), I happened upon an article on cnn.com about childhood heart repairs and how they aren't a cure and may not last. WHAT?!
In the article, a woman who had the same heart defect as me (Tetralogy of Fallot) was profiled. She had to have her pulmonary valve replaced while she was in her early 30s. They outlined her symptoms before the surgery: fatigue, shortness of breath while going up stairs and exercising, swollen ankles and feet). I had all of these symptoms and had for a year at least. But I thought I was just overworked, out of shape, and getting fat. (Hey, wouldn't everyone had thought that?)
In the article, the vice president of the Adult Congenital Heart Association was quoted. Adult Congenital Heart Association? There was such a thing? I researched them and found a great online community, whose members were people like me. They urged me to find a cardiologist who specializes in adults with congenital heart defects. I did some more research and found that the Mayo Clinic (which is about 2 hours from me) has an Adult Congenital Heart Disease Clinic. Well, whaddya know?
Before doing anything, I went to my already scheduled appointment with my doctor that Friday. And what I found out scared the crap out of me.
To be continued...
posted by Julia Hart at
8:51 AM
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