17 Year Old - Will this change my life?

[Nocturne]

One more thing -- I'll repeat what I said before -- get your Lp(a) levels checked! You will have to ask specifically for them to be checked, because your doc will not do it on their own unless they are really on the ball -- the connection between AVS and Lp(a) has only been known for a few years. We know that high Lp(a) speeds up the progression of CAVS, by up to two times. They are currently investigating whether or not lowering Lp(a) with niacin can help alleviate this. And there are new medicines just in the horizon that can lower Lp(a) levels by a LOT.

The point is that in the not too distant future, it is possible that Lp(a) lowering meds may be given to people with BAV as a preventative measure, which may significantly reduce the chances of someone with BAV actually developing AVS. I do not have proof of this but it seems to add up -- if high Lp(a) increases the odds of getting AVS, then we would expect that the people with BAV who do get AVS would tend to have higher Lp(a) levels on average, and lowering their Lp(a) might also lower their chances of developing AVS (and slow down its progression if it does develop).

It is not standard of care to do this (yet), and you will have to fit a bit to even get your Lp(a) levels checked, but remember that standards of care have less to do with making sure you remain healthy and more to do with making sure your doctor doesn't get sued. Get the Lp(a) checked, do what you can to lower it if need be, and keep your eyes open for the release of meds that lower it if it is high.

Wish I had known all of this when I was 17!

 

[Agian]

They say risk factors for AS are the same as those for Coronary Artery Disease. BAV means that AS tends to occur sooner than the 'normal' population.

'Normalising' LDL with statins hasn't been successful in slowing down stenosis in those with BAV... Here's the kicker though, what's normal?

Read this:
http://ac.els-cdn.com/S073510970400...t=1495201183_ee5f31a0be7a9b3eec30aa68378bb001

Minimise (aggressively) your risk factors for CAD and you drastically reduce your chances of a heart attack, when you're old. As an added bonus, you might be able to slow down any potential AS, prolonging the time between now and when (if ever) you need a valve replacement.

The chances are (pretty high), by the time you need replacement (let's say when you're over 50), you wont need an open heart operation. We're talking 30+ years, remember.

Nocturne is right. If I knew what I know now when I was 17, I wouldn't have eaten junk food, or smoked.

Keep your BP really well controlled, keep thin.

Get the following checked: Lipids, HDL, Lp(a), BSL, Hba1c, Homocysteine, CRP, thyroid and liver function tests, B12/Folate

Happy to share what I know and clarify. Try not to fret. Even if you need an op when you're old, you'll do fine... Meanwhile, enjoy your youth (please).

 

[Nocturne]

Holy Crap, Agian -- you *SMOKED*?!?

I shudder to think where I'd be now if *I* had ever touched a cigarette...

 

[Agian]

That was many years ago. There's no way I can justify a dumb decision, but I wasn't the only one. Ignorance.

 

[jcgtok17]

Glass,
My BAV was somehow never diagnosed until last month when I was admitted to hospital, and I'm 50. Prior to my most recent illness I ran 8km every other day and schedule races up to 1/2 marathon distance a couple of times a year. I ran NYC full in 2011 sub 4 hours but the distance is too punishing on other parts I have found (cracked femoral neck training too aggressively in 2010).

I had no symptoms related to my unknown BAV and had aortic value replacement May 1st (a little less than 3 weeks ago). My faulty/bipetal valve became perforated from a bacterial infection (Bacteremia) which attached itself to the heart valve (Endocarditis). Recovery is going well and my walking mileage is > 10km per day (+20 min. stationary bike).

My plan is to run the 10k distance in the Tokyo Marathon in February 2018, and maybe the full in 2019.

Your point #1.)
At 17 I am sure the BAV was an alarming diagnosis, but you should take a measured approach and follow your cardiologist lead. Your fitness aspirations seem very reasonable and achievable. I saw Arnold S. got a mention for his AVR operation, but don't be an Arnold ...... he got back to heavy lifting too early and was back on the operating table quite soon after his initial procedure.

Your point #2.)
Advances in medical procedures has also been noted. This factor is what led me to go with a tissue (bioprosthesis) valve versus mechanical. Less ongoing drugs requires and while the "life" of the tissue valve is considerably shorter than a mechanical one, more often than not the follow up procedure(s) can be done via catheter (TAVI procedures vs OHS). Hopefully a decision that is quite far down the road for you, but something to keep in mind and research well via useful sites like this one. Here in Japan the Crown valves are popular as the typical Japanese valve patient requires a 22-23mm valve. They expected mine to be 25-26mm hence went with the Trifecta (St. Jude Medical), but in the end installed a 28mm valve (the largest). I expect to be off Warafin by late August.

Wishing you all the best and please hit me up with any questions. My experience is very "fresh" given I'm still in hospital (being sprung next week!). JCG

 

[ashadds]

You're the same age as my son
I'll write more when I get back from work.

aren't you in your 30,s ? wow

 

[ashadds]

OP ! Even with valve replacement ..many people here have very active lives ! The only thing is to exercise common sense. blood thinners will not affect or restrict your activities . A bicuspid valve which is undiagnosed can lead to Congestive heart failure or arrhythmia and sudden death . Consider yourself lucky , if you had not know about this ,then your life itself would be in danger ....

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1804143/

The main thing is if your baseline health is good, and you have no other problems then you will be fine . Heck there is no difference between you and a normal person even with a prosthetic valve . If you are in heart failure then it becomes a true problem

 

[Agian]

aren't you in your 30,s ? wow

I wish. 48

 

[GlassOcean1]

Again thanks for all the replies people, I didn't expect so many kind words and responses, even if the curcumstances aren't brilliant, I am thankful for the opportunity to connect with such amazing people.

 

[spartangator]

Hi GlassOcean, just wanted to say welcome and second all the thoughtful comments about having a perfectly active life post-surgery.