joining the club soon

[drewg]

hello all,

name is drew. live in upstate NY. born with bicuspid aortic valve. had yearly check ups all my life. until around six years ago (27 now so i was 21). shame on me for not going. was in a recent car accident and they found that my ascending aorta was 6cm (6cm taa not good from what i hear and read). talking with the cardio guys in my area (Albany area). they state valve and aneurysm need to be corrected as soon as i heal from the other injuries sustained from the wreck. in the process of getting all my records to Cleveland clinic. love this site since i have found it. a lot of good info from people. yet not feeling good about the fact i have to do this at my age, but the time is here.

thanks
Drew

 

[Heart Of The Sunrise]

You will be fine the Cleveland Clinic is the best in the country!!!! I had my aortic Valve and aorta replaced 5 months ago. I am doing great! 6.0 is in the danger zone.

 

[Rachel]

Hi Drew,

Sorry to hear about your accident...but sounds like they caught your aneurysm in the process!

Hope that you heal up quickly and can move onto surgery soon - Cleveland is one of the best!

 

[kimcdougc]

drewg, you are so young. That means your recovery will be super duper fast! I am 53 and had my AVR 12 weeks ago and am now doing more physical stuff than I did before my surgery. It seemed to me that no matter what all the good folks said here, I was still nervous about the procedure. It did help reading all the comments here of those that have been through valve replacement surgery. There is a better life after your AVR. I had a bicuspid valve, which wasn't discovered until they opened me up. They only thought I had the stenosis. Fooled them! lol. Heal from your accident and get your surgery done. The sooner the better. We will all be here to encourage you before and after your surgery. Take care. - Kim

_____________________________________________________________________________________________________________AVR May 23, 2013, On-x valve 21mm, 53 year old female, in the waiting room for 10 years. AVR at Swedish Medical Center, Cherry Hill location, Seattle, WA. Dr. Glenn Barnhart!

 

[pellicle]

Hi

....yet not feeling good about the fact i have to do this at my age, but thedias here.

I was diagnosed at about 5 and had yearly checkups as I was growing up. At about 10 they did a surgery to split the cusp that hadn't (hence the bicuspid). That got me through till about 28,and I went in for an op to have the valve replaced. Back then (1992) patient surgeon communication was a one way street. More or less.

I was given a homograft (also called autograft in some publications) , there were two types:
* antibiotic preserved
* cryopreserved
This lasted me till 48 when I had a mechanical fitted, like you in some ways due to a discovery of a dialted aorta. Of course I am now on anticoagulants

I mention these things so that you can perhaps sus out with your surgeon what is the recommended pathway for you and your situation.

I understood that the human tissue valve replacements can get good milage (I got nearly 20 years from mine) but have heard that they are very sensitive to being touched during implanting. So y would need a surgeon with a good track record.

I don't know what is the best course of action for you but I expect that with the aneurysm they may choose a mechanical. To be honest that isn't a bad option. However you will need to learn about self management of your warfarin doses. If you go down the path of anticoagulants you will become the expert in dosing. Also you will gain the freedom to go and do what you want when you want and where you want.

I have come to Finland and brought my testing tool and a years worth of test strips. So I can now travel freely without any hassle.

Best wishes and do ask if you get info from your surgeon or cardiologist that you don't like the sound of. As y live in the USA I have discovered that you may not easily find freedom of choice in anticoagulant therapy. Europeans and even us colonials in Australia are actually far more free to make our health choices.

 

[TomG]

Hi Drew,

Interesting how you and I are the same, fact being last year I had a major car accident and they found that my MVP (Mitral Valve Prolapse) was getting pretty bad and I should see a cardiologist as soon as I can for further tests. Well I have had MVP for years and it was not really all that bad and for awhile I was getting it checked but then I stopped for years until this car accident. So I went to the cardiologist that my regular doctor mentioned and he did echo's etc, too many tests for me, but he said I should have it repaired or replace within a year, so he gave me a few surgeons names I went to one and he told me I really need to have it done very soon, so long story short I had made the decion for 09/13/12 to have it done and BEST decision I ever made, of course there were some bumps in the road but I am SO HAPPY that I had it done as my surgeon was able to do a repair of my Class 4 Barlows Diases Mitral Valve.

When it all is said and done you will look back at it as a memory.

TomG

 

[UWMike]

hello all,
...yet not feeling good about the fact i have to do this at my age, but the time is here.

Got you beat by a couple of years

If the nurses look anything like some of the ones I had then it's not all bad

But seriously, sounds like there might be a silver lining to that wreck of yours. 6cm is starting to push towards the dangerous side of things so it's definitely good they caught it now. Usually 5 cm is where most cardios will start talking to you about really doing the surgery. Mine was at 4.3 but since I was having the valve replaced it was kind of a "while we're in there, we may as well" type of deal. I often hear how rare it is for people of our age to have these problems but my roomie for the 6 days I was in hospital was 31 (having the exact same surgery) and there was another guy on the floor who had been there for 3 months at 27 and waiting on a heart transplant. It's a mixed bag of feelings, but try not to feel so alone and remember that it could always be worse.