Hi everyone, new to the forum

[stefan2013]

Greetings peeps!

My name is Stefan, 24 years of age and I'm from Australia. Hank was nice enough to approve my account so here I am.

What a SHOCK it was, to be at the doctor's cheerfully waiting for the echo results, which I suspected would be flawless, and see the doctor's face (reading the results for the first time) suddenly change to a more serious expression - "Actually they found a few things".

At that point I was still thinking it probably isn't significant, as they have diagnosed some murmur when I was kid but then later dismissed it as nothing serious. He went on about these vaguely familiar things: bicuspid valve, regurgitation, stenosis, etc. I was trying to gauge the seriousness of the situation but it was difficult, as this doctor approached everything very methodically and with a dose of seriousness.

Fortunately for me I've got one degree in the Biomedical sciences and a sound knowledge of anatomy/physiology, so I quickly grasped what he was talking about. But I still didn't understand the seriousness, I feel great, it's only moderate regurgitation???

As the doctor waltzed out of the room to do some printing or what not, I quickly got my iphone out and did a mini research review, as much as the time allowed before he came back. I read some disturbing information, primarily the likelihood of surgery and when the doctor returned, he confirmed these and kept going on about these mechanical, pig valves, blood pressure, ventricular hypertrophy etc... I felt my heart sinking. What just happened?

I entered this office as a fit and healthy young man, in the middle of my dental degree and 2/3 in the process of getting in the Australian defence forces, and now I'm leaving this office as a cardiac patient, and with recommendation to see a cardiologist.

This happened not to long ago and it's probably the biggest shock of my life. I'm happy to say that I came to terms with the condition fairly quickly; read up more on it and it's not as bad as I thought! I'm sure (and I hope) you guys agree.

As you might imagine, I've got a lot of questions! Due to some plans to visit family overseas, I won't be able to see a cardiologist until early next year. So, in the mean time, I'm really happy to hear your opinion, experiences and advice. The most important question I have is - How long does it take for this degenerative process of the valve to reach a stage where it impacts on heart function. I know it varies from person to person but I just want to have an idea, so what’s your experience?

2nd question – what I can and cannot do in order not to aggrevate the degenerative process of the valve. Can I still drink coffee? Can I still do exercise? I read that high intensity exercise is a no-no, so that means no more heavy weights gym for me?

Echo current results: - bicuspid aortic valve with very mild stenosis & moderate regurgitation
- mild aortic dilatation 3.8
- mild left atrial enlargement
- LVEF - 59% & normal left ventricular size and function

Cheers guys

 

[Agian]

Hi Stefan. You can drink coffee. I've given up, because I have a naturally high heart rate. I also lift weights, but have gone much lighter. Why don't you ring around to try and get an earlier cardiology appointment?

 

[AZ Don]

How long does it take for this degenerative process of the valve to reach a stage where it impacts on heart function.

I think the answer varies and what drives this process may be the biggest unknown. Something like 30% of those with a Bicuspid Valve have complications, so a Bicuspid Valve alone may never have any noticeable impact on heart function. Once you start to have regurgitation and/or stenosis though, I think it is more likely to progress.

High intensity exercise is generally not recommended for those with a dilated Aorta, though yours is still mild. A guideline that is easy enough to follow is to keep the weight low enough that you can do sets of 25 repetitions. Before I found out I was already a candidate for surgery I did some research on this and started a thread on it here: http://www.valvereplacement.org/for...se-and-stress-with-Aortic-Aneurysm&highlight=

FYI, there is a blood pressure medicine called Losartan. Preliminary studies have shown that it may slow or stop the growth of aneurysm in those with Marfan's. Some have speculated that it may have a similar effect on those with BAV. This is now being studied: http://clinicaltrials.gov/ct2/show/NCT01390181?term=losartan+bicuspid+valve&rank=3. If I were you I would ask your Cardiologist about it. Although it is likely you have a lot of time before anything needs to be done, I would see a Cardiologist right away if possible. I've found that other Dr's often don't know that much about heart valves and aneurysms. In fact, my Dr. didn't even tell me that the scan she ordered (for another issue) indicated that I had a dilated aorta, because she "didn't think anything of it". Good thing I asked for a copy of the scan report and had google to tell me what it meant.

 

[ski girl]

Yeah what you've got isn't that bad. Unless you're feeling symptoms you should continue with life as normal (IMHO!) as freaking out will likely make you prone to all sorts of other anxiety-related illness!

I nursed my BAV through 40 years of life, doing whatever exercise I bloody well felt like (I'm a competitive paddler and went through phases of lifting weights heavy enough that I could only do 3 reps) until my cardio noticed some changes on an EKG and suggested I back off a bit and have surgery soon.

You can certainly drink coffee, and alcohol, if you smoke you should quit that for all sorts of reasons - but there's really nothing you can do to speed up or slow down the progression of your valve failure. Although my surgeon and cardio both think that staying fit helped me keep mine going for four decades before I needed an AVR . . . .

What part of AUS are you in?

 

[epstns]

Stefan,

Welcome to The Waiting Room, the virtual room where many folks await their own turns at valve surgery. I, too, had a bicuspid aortic valve - for many years. Mine wasn't even diagnosed until age 52, and was replaced at age 63. All through that time, and even now, I live a vary normal life. I did all (?) the goofy things young people do -- the hot cars, hot women, the clubs. I was in the military for 7 years. I worked out - hard enough that if I was at a hotel and used their weight machines, the big guys who used them after me just grunted when they tried to push what I was bench pressing. (I did fairly long sets bench pressing my full weight.) I work 50-60 hours a week, I travel, we've raised a wonderful daughter. What's my point? If you don't feel any symptoms (especially shortness of breath, fainting or chest pain), then just try your best to live life. Until you are handed restrictions, you have none. Don't do anything really "stupid" but your life is still yours to live.

I don't remember the statistics about what percentage of bicuspid valve patients eventually need surgery, but even if you are among the "lucky few" it is not a death sentence. Remember that while these surgeries are, for the patient, probably the most life-altering day of their lives - but for the docs and technicians they are truly "just another day at the office."

 

[tom in MO]

How long is your big question. I read a paper that studied a bunch of deaths know to be caused by BAV. The statistics showed that the age of death ranged from ~20 - 80, with the median at 54 yo.

I was diagnosed with the BAV 20 years ago at 35; I got my valve job at 54.

The one thing you cannot do is exercise, diet, or live healthy and have the BAV go away. It is a " fait accompli".

You are still fit, you are still healthy, that has not changed. We all have the seeds of our death in ourselves, you just learned about one possiblity earlier than most. But don't let this diagnosis make you question the reality of your fit healthy self.

 

[T in YVR]

The most important question I have is - How long does it take for this degenerative process of the valve to reach a stage where it impacts on heart function. I know it varies from person to person but I just want to have an idea, so what’s your experience?

2nd question – what I can and cannot do in order not to aggrevate the degenerative process of the valve. Can I still drink coffee? Can I still do exercise? I read that high intensity exercise is a no-no, so that means no more heavy weights gym for me?

Echo current results: - bicuspid aortic valve with very mild stenosis & moderate regurgitation
- mild aortic dilatation 3.8
- mild left atrial enlargement
- LVEF - 59% & normal left ventricular size and function

On your first question it varies widely. I was told that in general, most surgeons don't operate until you're 'severe" in your regurg. You can go quite some time with mild or moderate regurg with no need for operation...I had severe regurg and a moderately dilated left ventricle and the cardiologist said I could likely go another 12 months and still be symptom free. Nonetheless I wanted it fixed ASAP. My view was not to screw with this - I was in a near term window when diagnosed and when surgery was not a matter of "if", but "when" - and the "when" was very near term. Once you get to that point, my view was to just get it behind me.

I was also completely asymptomatic and you'd never guess anything was wrong with me. However, my left ventricle was moderately dilated to 62mm at the time and the regurg was 'severe'. That is what really drove my AVR surgery. When your left ventricle starts to enlarge, your heart is starting to work harder than it should - the doctors told me that we needed to start to consider surgery because of this. Just DON'T wait until you show symptoms before you have surgery, if at all possible. Studies have shown the long term prognosis is generally not as good once you are symptomatic.

On your 2nd question, they should give you specific guidance to your condition/current state, but for me, I was allowed to exercise (mostly aerobic), but I kept my heart rate under 150 bpm. And no heavy lifting - that drives up your blood pressure - higher # reps with less weight. I got a wireless heart rate monitor and closely kept tabs on my heart rate during all exercise. Right up to my surgery I was exercising daily and running 5-7 km a day 4x per week. But you're still moderate regurg, so maybe they don't restrict you much...as Steve said, just live your life while in the Waiting Room (especially if you're there a long time), but maybe take a few precautions.

You also might want to ask them if they would do a TEE to verify the regurg estimate of the echo. The TEE is better at accurately determining/validating regurg, as they have a look with sensors that go down your esophagus to get a better view.

 

[big_L]

Re - exercise - As long as you stay away from weight bearing exercise that causes you to 'strain' you should be fine. Can't help with the rest, as I wasn't a 'regurg' patient.

Keep living your life and try to enjoy all that you can. Yes - you now have had a mortality wake-up-call. Take care of yourself. Get a good cardiologist that you like. If you going to stay in the same area for a number of years, I'd start shopping around for a surgeon and hospital.

 

[Duffey]

Hi Stefan, welcome to VR. It's nice to meet you but I wish it were under better circumstances.:wink2:

I'm a long time coffee drinker, and eight years post-replacement, I still drink 3-4 cups a day.:smile2: