it's usually congenital so you've had it since birth, yes?
Posted on 09/15/2016 7:22:24 PM PDT by An American in Turkiye
I turn 45 in November and was just diagnosed with a Bicuspid Aortic Valve. I have no symptoms whatsoever. My doc heard a murmur last month and I had an echocardiogram yesterday. Nurse called me today with the news.
I do have pretty high cholesterol, and my blood pressure is usually around 135/80.
Any Freepers or their loved ones have this? Any comments are appreciated as I'm continuing my research on the subject.
it's usually congenital so you've had it since birth, yes?
Fly, do not drive to the Cleveland Clinic. You are too young to have this uncorrected. Absolutely, do not mess with local doctors.
I am a cardiac anesthesiologist and critical care physician. With all due respect to other posters, if you remain TOTALLY without symptoms, and continue to be so, there is no need to entertain a very large surgery which is an aortic valve replacement. In fact, your age would work the opposite — in other words you would NOT undergo a valve replacement unless you had significant other issues related to this bicuspid valve (stenosis or regurgitation), because artificial valves only last so long, and repeats chest surgery is complicated and dangerous.
If I were you, I would know I had it, follow up on it as needed or at least every year — and see if there is any significant progression. Delay replacement as long as possible provided you don’t have any complications or symptoms of the disease...
Freepmail me if you want or have any other questions. All the best
A one way valve can be highly effective, reliable, and durable in any manner of specs. Some folks get the “joker” valve, but the Lord gave you a different kind. Naturally I’m with the doc: watch it close and don’t fix what works. Good luck an don’t panic! It’s only a pump.
Untreated? That doesn't sound very high, but something the doctor might want to discuss medicating. Treated, they might want to tweak medication a bit to try to get down.
As for the cholesterol- been a bit of bad press recently about the cholesterol lowering drugs. Not sure if that is a real issue, or something ginned up by plaintiff's lawyers, but I'd be cautious of anything other than a modified diet until that shakes out a little more.
As for the heart - if you are getting it addressed in Turkey, you might want a second opinion at the Cleveland Clinic, as someone else suggested. If you have high confidence in your cardiologist, listen to him or her.
Very good advice.
My mother had an 8”-10” section cut our of her colon last year. The doctor said it would an easy procedure for him and that it would only take about 40-45 minutes.
She got infection from the surgery and died 2 1/2 months later. She was in otherwise good health. The small tumor they removed was basically non-aggressive cancer and wouldn’t have required chemo or any treatment.
I agree with reducing the number of surgeries as much as possible.
I was born with a bicuspid aortic valve - a life time runner, a slight murmur was detected in a stress test when in my 30’s - cardio said, you are in great shape, nothing to worry about - just keep running.
At 60 the murmur got loud, 2 doc’s said you need to see a cardio.
In 30 seconds the cardio said “you have a bi-cuspid aortic valve” will need replacement in 10 years. Keep running, we’ll do annual echocardiogram.
At 63, no deterioration or stenosis - “you may never need the valve replacement”
At 64, ‘You need valve replacement TODAY or you could die at any moment”. 2nd opinion concurred - I had pig valve plus triple bypass (WHAT! How could that be? I have a runner’s heart - am healthy?”
I’ve had 9 major surgeries - this is the only one I never want again - it was rough.
Here’s the good news: I was home in 3 days, one week from 5 hour surgery I was walking 1 mile/day; in 2 weeks, 3 miles a day; in 3 weeks, 5 miles a day. Ran a full 10k 9 months after surgery - all the grace of God.
At 71 my pig valve (oink, oink) is doing well. I walk 5 miles/day and cycle 12 - 20 miles 3 times/week. I did the 5 miles this am, 18 on bike this afternoon. Stay in shape, eat healthily. Love your wife and family.
Too much here to discuss, past my bedtime - will tell more tomorrow. Will PM my phone number so I can help in any way.
Talk to the doc who posted before me - he will be a great resource and knows far more than me - but I’ve been through it.
Why not a mechanical valve that would outlast me? #1 - didn’t want to be on blood-thinners/Coumadin for the rest of my life - and broccoli is my fav veggie, love carrots. My cardio said when I need a new valve, they won’t have to do open chest surgery, and that is true today.
More later - nite!
Re your cholesterol medication if taken. Beware of STATINS some patients experience some type of dementia, short term memory loss or at least muscle and joint pain when taking these. If prescribed, ask your cardiologist if Niacin might be an alternative.
DH had a aortic replacement valve several years ago *mechanical* and feels great. However, he did not have the same unusual circumstance as you. Good luck with your doctor and your continued relative good health.
Had an artificial valve in 2000. Same diagnosis. Not nearly as bad as I expected, though hope I never do it again.
Dr. will insist on an artificial because of your age. Porcine valves are good for about 10 yrs. Advantage is you don’t have to take warfarin the rest of your life. Monthly ‘pro-time’ checks.
You do with artificial but they don’t wear out.
My artificial valve take a lickin’ and keeps on tickin’. Yes you and people near you can hear it.
Oh, they come with a lifetime guarantee. :)
But “What difference does it make?” It’s better than transverse sinus venous thrombosis.
You should get your bp under control. At 66 yo, I’ve lost weight and now regularly exercise (walk) at least 30 min./day. I was in your condition, but now 120/70 without meds.
My best friend from childhood has the valve leakage since forever. His father is a doctor. He’s fine with no surgery.
Yes, had it since birth.
Rough? Based on your recovery I'd say you did great.
My cardio said when I need a new valve, they won’t have to do open chest surgery, and that is true today.
I think that's why more surgeons will recommend a tissue valve these days, plus a tissue valve will most likely last much longer than it once did.
I think if a person has low risk, they'll still do surgery for a second replacement, but in the future they'll probably do them all by catheter.
“plus triple bypass (WHAT! How could that be? I have a runner’s heart - am healthy?”
Do an internet search on “Dr. James Fixx”.
What you have/had re: your heart bypass surgery is congenital, period. No amount of exercise, etc, can stop it.
Thanks gas_dr. I was taken aback at first but after some research, the heart seems to usually compensate for the lack of valve. My doc will continue to monitor it. We haven’t discussed surgery. And perhaps I jumped the gun on the diagnosis; he is performing a TEE on me next month. The nurse told me that my ribs may have blocked the view during the regular echocardiogram performed yesterday, so he wants to perform the TEE to take a better look. Hecsaid there is a POSSIBILITY that I have BAV, but until I have the TEE, it is only speculation. But I heard the term BAV and freaked out a bit. It’s hard being a patient sometimes...
My son (23) has a bicuspid aeortic valve and his cardiologist told him that symptoms will tell him when he needs the valve replaced. If stenosis develops he’ll lose stamina making it difficult to walk up stairs, etc. That is when the valve will need to be replaced. BTW, it can be done intravenously now.
Did they say anything about your aortic root? That’s what I’m facing soon. :(
Niacin works but you may get hot flushes and skin rash
Try Chinese Red Yeast
What worked for me was Cholestoff...made from pine bark
Last 2 years I stopped all cholesterol meds and went with a heavy weight routine...cholesterol and glucose levels down...bone density up...leg press 325 lb..age 74
Exercise is here: https://www.youtube.com/watch?v=K05Db4WGxXg
I am an echo tech. I have worked in Cardiology for 30 years with some of the top Cardiologists on the East Coast. The only two things you have to keep track of are the size of your left ventricle (the pump chamber of your heart) and your ejection fraction. (How efficient your heart is pumping) It should always be 55-65. The way to keep track of this is to get an echo every year, and have a good cardiologist! You may never have to do anything further if you are lucky and your aortic valve doesn’t deteriorate too much. The warning signs will be shortness of breath and swelling of your ankles. (Fluid retention) If your Cardiologist tells you it is time for a valve, take his advice! if your heart deteriorates too much, the valve won’t help much. you can’t get your “pump” back after it deteriorates. the good news is math at they are starting to put in valves without opening your chest. In the next few years, if you need one it shouldn’t be a major operation. hope this helps. best Regards!
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