My Heart History
When I was born, there was a complication. My Aorta valve, the one responsible for pumping oxygenated blood from my heart into my body, was too narrow. In fact, it was so narrow that I needed an emergency surgery to keep me alive. Luckily, doctors knew what to do. They placed a flexible tube into my femoral artery, traced it all of he way to my heart, stuck a balloon into the narrow valve, inflated the balloon, and widened the narrowing enough to keep me alive. This is called a Balloon Valvuloplasty. One cannot make this kind of thing up.
This emergency surgery was meant to last me until I was fully grown, at which point I would need my Aortic Valve replaced. So I waited. I had yearly check-ups until I was 18, the point when docs said I would need a replacement valve. 18 years old came and went and the doctors decided that 21 was my new goal. I made it to 21 years of age with no issue so we decided to keep waiting. This game continued until last year.
As a 26 year old, I walked into my cardiologist's office, expecting the same "see you in a year" type of conversation. Instead, he looked at me and said, "it's time."
When I heard this I started to cry. Picture that, two grown adults sitting in an office: one trying to having a serious medical conversation and the other sobbing. I guess I had become complacent. I guess I thought it was never actually going to happen. I guess I thought I was invincible.
Anyway, that was 2015. My doctor took his findings to a board of cardiologists, reviewed my case, and determined that I could possibly wait another year. I was relieved, but knew that I could not keep putting this on the back burner any longer.
At my 2016 appointment, my doctor looked at echocardiogram. He made a funny face and explained "when I saw the results, I was like, whoa!" I did not know what this meant. When he left the room, I decided it would be a good idea to understand further what "like whoa" meant.
Basically, my narrowed valve has created a restriction in the tubing of my heart. The pressure behind the restriction has always needed to be higher to make sure blood could get through. For the last few years, the difference from behind the restriction to in front of the valve had been about 55mmHg. This year, it had jumped up to a 99mmHg difference. Basically, the pressure issue doubled in one year.
So, it is time to get surgery. There is a lot to consider, a lot to figure out, and a lot to record. That's where this blog comes into play. So, that's basically my story so far. I plan to post more blogs entries with detailed information of what is happening through this process. Enjoy!
I just found out this week that I might need an aortic valve replacement. I have bicuspid aortic stenosis. It was interesting to read about how your transaortic gradient went from 55 mmHg to 99 in one year. Do you know the how restricted your aortic valve area was?
ReplyDeleteMy gradient is at 30 mmHg, and my valve area went from 1.46 sq. cm. in 2010 to 1.02 in 2015 to 0.87 this year. Last week, I fainted on the badminton court while playing competitive badminton on a tournament due to lack of blood flow through the valve, so the cardiologist said I should get my valve replaced.
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ReplyDeleteWow, I am sorry to hear that you passed out! That must have been scary. I was lucky to have no symptoms, even with a 99mmHg gradient.
ReplyDeleteIt is great that you can get it replaced and continue on with your life. I was worried that having this surgery would completely alter my life...and it did. I now feel like I can do whatever activity I want without concern. I also do not have a heart problem anymore! You'll be playing Badminton sooner than you think!
This surgery is becoming more routine every year. I hope it goes well for you!
Do you know your valve area in sq cm as measured by the echo-cardiogram when you were told that you need your valve replacement?
ReplyDeleteI am not sure of this. I know that according to my echo, it appeared as though my valve had a diameter of 4.9cm. When I got a CT Scan a few weeks afterwards, the number came back at 3.7cm. I guess the CT is more accurate. My doctor said the usual diameter is 2.5cm and that anyone with an Aortic aneurysm, you can expect a growth of about a millimeter every year. Check that prediction out with your doctor though.
ReplyDeleteI am confused, as your 2nd to last paragraph of this blog says you have a narrowed valve causing a restriction in blood flow. So, the valve area must be decreasing instead of increasing. I was told that my valve area is down to 0.87, yet my pressure gradient is 30 mmHg ... every echocardiogram seem to show a reduction in my valve area ...
ReplyDeleteI am sorry. I wrote "aortic valve" in the comment above, but I was actually referring to my Ascending Aorta." Oops. I did have a narrowed valve, but I do not know the dimensions.
ReplyDeleteHi there! I came across your blog from Instagram. I’m a worried new parent of a baby girl with aortic stenosis. It gives me so much relief and hope seeing others who have had the balloon procedure last them well into adulthood and even after valve replacement are thriving. I didn’t even know it was possible for a balloon valvuloplasty to be that long lasting so thank you for sharing your story.
ReplyDeleteI am so happy this helps. I cannot imagine the amount of stress a new parent must go through, let alone the amount of stress that comes along with parenting a baby with a congenital heart defect. What I have learned is that cardiologists are amazing and that a full life can be lived with my condition. Thanks for the comment and I hope you are doing well!
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