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Hi, my name is Alex and I'm 23 years old. Two weeks ago I had a physical, the first one in a long whole. My doctor checked my heartbeat and said I had a heart murmur. He said it was probably nothing, that maybe because I was a thin guy he might just be hearing my heartbeat at a louder level. He said he wanted to send me to a cardiologist just to rule out anything serious. I went to the cardiologist and had an echocardiogram done. The next day I got a call from my Dr. and he stated the cardiologist was concerned, that one of my valves was not functioning properly. I immediately was scared. I went online and spent a whole lot of time looking up things like "heart valve not functioning properly" and read a lot of articles saying that a lot require surgery. I was prepared to hear this, knowing you can't really change the structure of the heart with a pill, that someone would have to go in there and fix it. The next day I met with the cardiologist and he told me I had a bicuspid aortic valve, and that one of my valves was leaky. He had stated it would not be able to be repaired, but replaced. And this, of course, required surgery. The two options he gave me obviously were a tissue valve or mechanical. I learned that the tissue valves only last 10-15 years and since I'm young, there's no doubt it'll have to be replaced in the future. And that the surgery required to do so when you've already had a valve repaired is quite risky. The mechanical one can last a lifetime but I would have to be on blood thinners for the rest of my life, but still, this would be the best option. He stated he wants me to have surgery within a month. I was shaking with fear when he was telling me all of this. Thinking why me? Open heart surgery is THE LAST THING I ever thought I'd have to deal with. It's been a little over a week and I am happy to say that I've done LOADS of research on the mechanical valve, and that it is a pretty routine procedure, as well as research on what to expect before, during, and after surgery. I've also done tons of research on blood thinners, the consistency with Vitamin K, as well as watching out for foods that contain a lot of Vitamin E (which thins your blood.) I am, for some weird a** reason, actually looking forward to the surgery. I'm calm, ready for it, knowing what is coming, and how to take care of it, and glad they caught it before it was too late. I live with family that will support me through this journey, and am blessed to have access to so many good surgeons. My cardiologist referred me to see Dr. Shemin at Ronald Reagan UCLA. He was the president of the American heart association and is the chief of the Division of Cardiothoracic Surgery at UCLA and has done plenty of surgeries with valve replacement and tons of research on the mechanical heart valve. I have an appointment to see Dr.Shemin in 3 days and am really looking forward to it. That morning I have an appointment to get a CT scan, since I have a bicuspid aortic valve and they want to make sure nothing else needs to be done to my heart at the time of surgery. My mother has talked to plenty of her Dr friends and they have given her names of good cardiovascular surgeons. My mother thinks it'd be a good idea to seek a second opinion, not on the procedure, since I know i have to have it done, but to see if I like any of the other surgeons. And I agree. I'm glad to have discovered this forum to read up on many peoples stories before and after surgery. Sorry for the long post lol
 
Hi Alex. My name is Dan and our stories are quite similar. I was 23 when my BAV was discovered and had surgery when I was 24 years old. We're also much the same in that we've both done a ton of research ahead of time. You are making the right decision going with a mechanical valve as "life on coumadin" is nowhere near as bad as some people make it out to be. I would encourage you to open an account here on valvereplacement.org and feel free to reply or PM me if you want to chat further. I didn't have anyone close to my age who'd been through the same surgery and while it might not be loads of help, sometimes its nice to bounce something off someone who's been there before.

Good luck!

Dan
 
Hey Alex, welcome aboard the good ship AVR

I would agree with all your points and thoseof Dan too. With respect to a life on "blood thinners" I have found that its not as bad as its cracked up to be and that home testing (indeed I do full home monitoring including dosing) liberates you from being bound to a lab.

Imagine asking a diabetic to go to a hospital 3 times a day to get their blood sugar tested for their insulin dose.

Since I started I've learned a lot about the process of home testing and just the other day tried to put together a blog post where I attempt to explain self testing and self dosing and all that simply. I think I failed with the simply, but the beginning has a summary which is simple.

http://cjeastwd.blogspot.com/2014/09...ng-my-inr.html

The most important take out from that is that the whole thing takes me 10 min a week (including writing my data into my spreadsheet) and determining my dose (changes are uncommon) and then filling my little tablet box with the weeks pills.

Hope all goes well for you
 
Welcome to the forum. Most of us were just as surprised as I'm sure you were to find out about having a congenital heart defect. Great that you have a good attitude toward the surgery, it is a relief to have it over with and OHS was not as bad as I thought it would be.
 
Hi! Welcome to the forum, another young person! I am 19 and got 2 valves replaced in april when I was 18! It's good to see you're in a good place, you feel ready and you are! It's good you're going with the mechanical valve. I didn't get a choice because I needed te ross surgery, but for me maybe the choice would have been different since I'm a girl. Anyway, good luck with everything! And we young people heal amazingly fast, so keep that in mind whenever you're not feeling as well :)
 
Hi! Welcome to the forum, another young person! I am 19 and got 2 valves replaced in april when I was 18! It's good to see you're in a good place, you feel ready and you are! It's good you're going with the mechanical valve. I didn't get a choice because I needed te ross surgery, but for me maybe the choice would have been different since I'm a girl. Anyway, good luck with everything! And we young people heal amazingly fast, so keep that in mind whenever you're not feeling as well :)
 
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