Hello, new member here....and question on searching for surgeons.

[Ryan CA]

Hello all,

I am so glad to have found this group. I was born with Bi-cuspid Aortic Stenosis and have NEVER spoken to anyone else with the same condition. I have already learned more here than any cardiologist has explained to me in 37 years! Thank you all so much for sharing your experiences and advice!

A quick bio: My name is Ryan, I have lived in Southern California my entire life. I am 37 years old and was diagnosed at 2 months old. My parents were told I would need valve replacement before I turned 5. Well, luckily, things never progressed and the only effect I ever experienced was being told I couldn't play football in high school. I played baseball through college and have ridden bikes from then until now.

I ride a mountain bike, and up until 3 weeks ago, I rode 3-5 times per week and many of the rides were fairly intense rides with 20-30 miles and lots of climbing. I am always cognizant of my condition and listen to my body, thankfully I have been able to ride without issue for the most part. The last couple years I have actually ridden more than ever and felt stronger on my bike than I ever have. 3 weeks ago I went in for my yearly cardiology check up and following the echo, my cardiologist comes in to the room and says, "Well, things have gotten worse. You really need to stop riding."

Apparently, my valve has narrowed since last visit and the regurgitation has increased. I am at 1.8 valve area and a pressure gradient of 30. Believe it or not, I didn't even know what those numbers meant until finding this site. I asked for more clarification from the doctor, and I asked more about what these new numbers mean but what I got was, "Listen, I know this isn't what you want to hear, but you just need to know you should stop riding."

After reading stories here, I am more grateful than ever to have had as much time as I have without symptoms...I am still mostly asymptomatic...I think.

Now, I have more questions than ever. I have tried to find ways to research new cardiologists, particularly some that may have some experience with active patients. Can someone please point me in the right direction on how to find and research cardiologists?

Thank you all again for the great site and the great community.

Ryan

 

[ski girl]

Hi Ryan-

A valve area of 1.8 and gradient of 30 doesn't sound too bad to me! There are thresholds for severity of stenosis (which I can't remember now that I'm fixed and it's not relevant) but 1.8 I think is just mildly stenotic. When my valve area was 1.0 I was still referred to as moderate.

So yes I agree, you need a different cardiologist . . . there will be other people on this forum who live in your area and can probably recommend one - however if you want to make a trip to Western Australia I can hook you up with mine. (And you can do the Cape to Cape 4-day MTB race in October while you're at it.)

Good luck!

 

[ski girl]

Just looked it up on Wikipedia (the source of all info!) and pressure gradient 25-40 is moderate, valve area over 1.5 is mild. I'm no doctor - but I was a lot worse than you and still had no restrictions other than to stop if I felt short of breath!

 

[Ryan CA]

Hi Ski Girl,

Thanks so much for responding! I have really been inspired by reading your posts about running and riding. The Regurgitation I have has an Ejection Fraction of .512. I am already on Metoprolol, and after the most recent appointment, I have been placed on lisinopril. Did you have regurgitation prior to you AVR? If so, do you recall what it was?

Thanks again....

 

[ski girl]

Hi Ryan-

I had some regurg but I can't remember how much. I was never prescribed any drugs. That's a whole heap of help, isn't it . . .

 

[epstns]

Hi, Ryan, and welcome to The Waiting Room - the virtual room where many of us await their own turns at valve surgery. I spent over 9 years waiting, and I think I pushed my limits for most of that time. I was older than you (62 at diagnosis, 63 at replacement) and had only trace regurgitation. My issue was stenosis - a stiffening of the valve leaflets so that my valve would not fully open. It sounds like you have both stenosis and regurgitation. That may make some of the measurement criteria a bit foggy, since you have more than one issue from one valve.

When I was first diagnosed, I was referred to a cardio at the hospital 2 blocks from my home. Remember, I was only 52 at the time and was running 7 days a week. This cardio wanted to treat me as if I was in my 80's. He said that since most stenotic valves were purely the result of advancing age, he felt that it was appropriate to treat me as if I was old, too. I fired him quickly and scoured the internet checking the practice specialties of cardios in my area. I was lucky enough to find one who did have a specialty in treating valve disease in younger, active patients. He and I jointly developed my case management plan and he and his successor (same office group - first guy moved away) treated me for the 9 years before I finally said "it is time" and had the valve replaced.

If you cannot find anyone by a simple web search, I would think that if there are any college or semi-pro sports organizations in your area, they might have relationships with cardio's who treat athletes and other active people. I would start there, and maybe also ask at whichever hospital near you has the best-ranked cardiac care group. These specialists are out there -- we just have to look for them. Now, if you were in Chicago, I could suggest a great one. . .

 

[TheGymGuy]

1.8 and 30. Ha! That's just a lil' bit. Enjoy, ride, and prosper. Listen to your body, and know that this disease progresses on its own. Exercises does not make it worse (there no research showing that), time and randomness do. My, unprofessional, opinion is to find a better cardiologist and do things at your own pace. If you get super winded or lightheaded slow down or stop. You know how your body reacts to exercise, so if something feels out of the ordinary, slow down. Other than that, keep on staying active - it will only help you later.

 

[ottagal]

Hi Ryan,Welcome to the site. I agree with all the above comments. Your numbers don't sound that bad unless we are missing something. Has he mentioned anything about dilation of your ascending aorta? I would be getting a second opinion.
Best wishes!

 

[ElectLive]

The Regurgitation I have has an Ejection Fraction of .512.

You have pretty good (in our world anyway) stenosis values, as the others said. But depending on what you meant by this regurgitation value, that could potentially be not so good. A regurgitant fraction % (aortic) of 50 or more is classified as severe. Your regurgitant fraction above is indicated as a decimal value, not a percentage as normally done, so not sure if this is actually what you were referring to, but anyway, you may want to at least double-check that. You'll find the official regurgitation classification system here in the US here, including other key measurements, page 15 (e536): http://circ.ahajournals.org/content/118/15/e523.full.pdf.

 

[Ryan CA]

Hi Ryan,Welcome to the site. I agree with all the above comments. Your numbers don't sound that bad unless we are missing something. Has he mentioned anything about dilation of your ascending aorta? I would be getting a second opinion.
Best wishes!

Thanks ottagal,

He hasnt mentioned anything about the ascending aorta. I think that is part of the problem, he isn't volunteering anything and I didnt know to ask about that.

After finding this site, I did go back and request a copy of my latest echo results. That is how I know my Valve area measurements, Pressure Gradient and ejection rate. Is there a number to look for with regard to dilation of the ascending aorta?

I guess it is my fault for not asking more and doing more research in the past, but this was the first time the doctor has ever said, "Its getting worse" so until now, I have just been plugging along in blissful ignorance. He seemed more concerned with the regurgitation than anything.

I am seeing my primary care physician tomorrow morning to get authorization for a second opinion.

Thanks again.

 

[Ryan CA]

You have pretty good (in our world anyway) stenosis values, as the others said. But depending on what you meant by this regurgitation value, that could potentially be not so good. A regurgitant fraction % (aortic) of 50 or more is classified as severe. Your regurgitant fraction above is indicated as a decimal value, not a percentage as normally done, so not sure if this is actually what you were referring to, but anyway, you may want to at least double-check that. You'll find the official regurgitation classification system here in the US here, including other key measurements, page 15 (e536): http://circ.ahajournals.org/content/118/15/e523.full.pdf.

Thank you! I will check that out. The number I was referring to, I believe is the Ejection Fraction, not regurgitant fraction. On the echo results is simply said EF: .512
Could they be the same thing?

Thanks,
Ryan

 

[scott.eitman]

Even when I was told I needed surgery, my Cardio did not tell me to stop riding. Yes, he knows I ride. I'm a road guy. We came to realize that my heart worked at its best under stress, like riding.

I recommend the CCF but in lieu of that search out the closest "Heart" hospital and make an appointment with whoever they recommend you see. The scheduler should be able to direct you to a good Cardio based on the info you tell them (age, diagnosis, biker...). If you are not happy, make an appointment with someone else. Don't be afraid of hurting feelings, it is about you, not them.

Stay well
Scott

 

[ElectLive]

The number I was referring to, I believe is the Ejection Fraction, not regurgitant fraction. On the echo results is simply said EF: .512
Could they be the same thing?

No, ejection fraction and regurgitant fraction are two very different things, so that's why I wanted to make sure, with the wording you had used. EF is the standard abbreviation for ejection fraction, so that should be it, and it specifically is a measure of the pumping capacity of the heart. However, it also is indicated typically as a percentage, so your .512 may mean 51.2% (as suggested by the name, the math is literally a fraction, so conversion to decimal does precede the final percentage value). Anyway, 51% would be a little below normal (55% - 70%) but usually is not an area for concern until below 45% or so. In any case, double-checking the echo for any regurgitation specific values, compared the chart in the guidelines, is still a good idea just to be sure. Stenosis is far more common, but for some, regurgitation is more the problem area than the stenosis.

 

[Noyolk]

Loma Linda has a great medical center/teaching hospital. When I lived in So. Cal, that is where I went for annual echo and follow up. I have not lived there in 20 years but I would check into that first if I were to move back. Not too far from Alta Loma. Many healthy and active people live in Loma Linda so I think you could find a Doc who had similar clientele. Best Wishes.

 

[Ryan CA]

No, ejection fraction and regurgitant fraction are two very different things, so that's why I wanted to make sure, with the wording you had used. EF is the standard abbreviation for ejection fraction, so that should be it, and it specifically is a measure of the pumping capacity of the heart. However, it also is indicated typically as a percentage, so your .512 may mean 51.2% (as suggested by the name, the math is literally a fraction, so conversion to decimal does precede the final percentage value). Anyway, 51% would be a little below normal (55% - 70%) but usually is not an area for concern until below 45% or so. In any case, double-checking the echo for any regurgitation specific values, compared the chart in the guidelines, is still a good idea just to be sure. Stenosis is far more common, but for some, regurgitation is more the problem area than the stenosis.

Thanks so much. I will check for a Regurgititant Fraction.

 

[Ryan CA]

Loma Linda has a great medical center/teaching hospital. When I lived in So. Cal, that is where I went for annual echo and follow up. I have not lived there in 20 years but I would check into that first if I were to move back. Not too far from Alta Loma. Many healthy and active people live in Loma Linda so I think you could find a Doc who had similar clientele. Best Wishes.

Thats great to hear....I was kinda thinking the same thing. I will ask the GP tomorrow about getting in at Loma Linda.

 

[sood]

Hi Ryan. I am in SoCal and just had surgery. As others have said your numbers don't sound too bad. I was at a valve area or around 1.2 cm the past 12 years before I had surgery 5 weeks ago. PM me if you need some good doctors in SD. As far as the ascending aorta, anything close to 5 cm for a person with a bicuspid aortic valve would recommend surgery.

If you haven't had one, you should get a ct scan or MRI of your chest at once. The echo results on those things aren't very accurate for aneurysms. And anyone with an abnormal valve is more susceptible to developing an aneurysm in the aorta. My cardio also recommended a brain scan, although less likely, some people with our valve issues are also susceptible to brain aneurysms.