On-X Aortic Heart Valves: Safer with Less Warfarin On-X Aortic Heart Valves: Safer with Less Warfarin

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17 Year Old - Will this change my life?

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  • #16
    Hey mann.. When I first joined this forum, I thought I was the youngest here. Nope I was damn wrong. I was diagnosed in Dec 2016, I was 28, I get to know it because I was buying insurance but the Dr heard a murmur. And suddenly I have BAV and severe regurgitation. What the f right? That's how I felt, I had no symptoms no family history and suddenly a pop up message and everything changed...*

    When you mentioned blood thinners, skiing, and weight lifting I first thought about all the wonderful people here, who have already responded... so as I wait for my turn for surgery (which I hope to delay if God allow it), I'm gonna take their words. They had been there done that and lived a wonderful life.*

    Nocturne has a great point too, you r young and you know it early. If I knew my BAV when I was 17 I wouldn't lived my life the same way, I'd sleep early, rest well, eat well and keep in damn good shape. But life takes its course, If I knew it back then I wouldn't have worked so hard and be so passionate about having a family.*

    So, you have BAV, that's not a real problem, as long as it did not leak really bad, like mine, your heart functions normal and you have no symptoms, you might never needed the replacement. Good luck and you will be in my prayers! Strict around and be a support to others, who might be in the same situation, encourage and pray for each other. It's after knowing my condition I took some time to slow down and appreciate life.*

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    • #17
      I'll agree with Nocturne - In knowing that you have a BAV, you have the luxury of knowledge. You can keep an eye on it, and if it never gets bad enough to require surgery, it will be just another periodic check-up to do. If it does progress to the point where intervention is warranted, you will have plenty of notice, and you will be able to plan your course with plenty of good information.

      I didn't find out about my "probable" BAV until I was 52 years old. By then I had completed college (and wrestled), 7 years in the military, built and drove race cars, traveled, married, raised a family, lifted weights, ran/jogged. . . did just about everything I wanted to do, just like any other guy 10 years younger than I was. For the first couple of months after my diagnosis, I was in a sort of super-funk. Then I found this site and met the folks here. They helped me to see that my life was not ending, it was merely changing. I, too, was in the "watch and wait" status with my valve, and remained so for almost 11 years. During those years, I learned to just get on with my life. For most of that time, I felt absolutely no symptoms or "illness." Unless I chose to tell someone of my situation, they had no way to know. I did sort of slow down during the final year before my surgery, but that was my only symptom. As I told my cardio, I was ". . . tired of being tired."

      I had my valve replace, finally, at age 63 - 6 years ago. I slowed down for a little while, but by the first anniversary of the surgery, I was pretty much back to where I started, or maybe even better. Now, in spite of nearing 70 years of age, I continue to live my life just as most of my 50-something colleagues wish they could. I'm still working 50+ hours a week, going to the gym, traveling, whatever. You get the picture - Life is Good!

      Have faith! You already know you have a condition that will need to be watched. Not many more surprises after that. Stay on top of your doctor visits and follow instructions (as long as they make sense. Don't let them treat you as if you were 80 years old when you're not.), but by all means live your life. This is not a death sentence. It is a LIFE sentence. You will need to monitor it for life, but you will have your life to live.
      Go Class of 2011!

      Steve Epstein
      9 Years in The Waiting Room, then on February 28, 2011,
      AVR with 23mm Edwards Bovine Pericardial Tissue Valve, Model 3300TFX, Pacemaker - Boston Scientific Altrua 60 DDDR IS-1 and CABG (LIMA-LAD) at Northwestern Memorial Hospital, Chicago by Dr. Patrick McCarthy and the most wonderful team of professionals I could ask for. New pacemaker (Boston Scientific L101) and ventricular lead, July, 2016.

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      • #18
        Originally posted by cldlhd View Post
        So you're replacing the valve preemptively? Is it showing signs it's deteriorating? When I had my aneurysm replaced 2 years ago I thought about having my bav replaced with a mechanical​ but my surgeon was totally against it as I had no stenosis and only trace leakage so I had the valve repaired.
        Currently my aortic valve has moderate regurgitation and mild to moderate stenosis. The surgeon's exact words were, "we'll already be in there, we won't leave you with a leaky valve." He offered me the possibility of repair but wasn't terribly optimistic about the odds for success and, assuming success, informed me that the repair probably wouldn't outlast a bioprothesis. I chose mechanical so that maybe I won't have to get another OHS.

        Bottom line, the valve wasn't too bad yet but it was just a matter of time.

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        • #19
          Originally posted by Agian View Post
          You're the same age as my son:-)
          I'll write more when I get back from work.
          I have a son his age, too...

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          • #20
            Originally posted by ClickityClack View Post

            Currently my aortic valve has moderate regurgitation and mild to moderate stenosis. The surgeon's exact words were, "we'll already be in there, we won't leave you with a leaky valve." He offered me the possibility of repair but wasn't terribly optimistic about the odds for success and, assuming success, informed me that the repair probably wouldn't outlast a bioprothesis. I chose mechanical so that maybe I won't have to get another OHS.

            Bottom line, the valve wasn't too bad yet but it was just a matter of time.
            Makes sense to me, Fwiw, I was going to go mechanical if my valve "couldn't take a stitch" . I didn't have any stenosis and trace regurgitation so it was repaired. My surgeon is also big on repair so that probably influenced the decision a bit.

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            • #21
              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!

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              • #22
                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/S0735109704007...30aa68378bb001

                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).
                Bicuspid Aortic Valve. Moderate Aortic Valve Stenosis. Ascending Aorta: 4.1cm
                In the waiting room.

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                • #23
                  Holy Crap, Agian -- you *SMOKED*?!?

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

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                  • #24
                    That was many years ago. There's no way I can justify a dumb decision, but I wasn't the only one. Ignorance.
                    Bicuspid Aortic Valve. Moderate Aortic Valve Stenosis. Ascending Aorta: 4.1cm
                    In the waiting room.

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                    • #25
                      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
                      BAV (congenital) / AVR May 1, 2017. St. Jude Trifecta value (28mm). National Hospital Org. - Tokyo Medical Ctr. Dr. Osako, #2 Dr. Yamada.

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                      • #26
                        Originally posted by Agian View Post
                        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

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                        • #27
                          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

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                          • #28
                            Originally posted by ashadds View Post

                            aren't you in your 30,s ? wow
                            I wish. 48
                            Bicuspid Aortic Valve. Moderate Aortic Valve Stenosis. Ascending Aorta: 4.1cm
                            In the waiting room.

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                            • #29
                              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.

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                              • #30
                                Hi GlassOcean, just wanted to say welcome and second all the thoughtful comments about having a perfectly active life post-surgery.
                                Ross procedure, Oct 2007, by Dr. John Oswalt at the Austin Heart Hospital

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