Recently diagnosed with Bicuspid Aorta Valve

[Sgt. G]

Last week I went for my yearly physical and my Family Practice Doctor started a new physical regime where does a sonogram of the heart and was diagnosed with a Bicuspid Aorta Valve with a leak. A few days later I went back in for a more thorough electrocardiogram so that I can give to a Cardiologist.

For the past 5 or 6 years I have been complaining to my Doctor about feeling tired, decrease in stamina, weight gain, shortness of breath and tightness in my chest. Each year it has been getting worse and it is to the point where I get winded walking up a flight of stairs. Up until a few years ago I was very physically active. I have competed in many 5Ks, 10Ks, and half marathons. I also used to be a weight lifter but I get so tired now I mostly do nothing. This lack of physical activity has kinda made me depressed. Over the years my doctor has told me that I'm just getting older (I'm now 46), allergies, or have sleep apnea.

I actually feel a bit relieved to finally know why my stamina has fallen off so drastically over the past few years.

What should I look for in a Cardiologist? What kind of questions should I ask? I see a lot of these numbers and measurements but I don't understand all of them. I don't want to seem like I'm over thinking my condition but I'm very concerned. Both of my Grandfathers died of sudden heart attacks,

Thanks,

 

[skeptic49]

Welcome to the forum. There are many of us here with BAV and associated conditions. There is a wealth of information out there on bicuspid aortic valve disease, but to get you up to speed I think you should look for a cardiologist with connections to a heart surgery center of excellence. Usually this means a major university teaching hospital, if there is one near you. BAV is not fully understood, causes, progression, etc. Many or perhaps most people with BAV will need surgical intervention at some point. Aortic aneurysm are often associated with BAV so you will want to have an evaluation of your aorta. A CT angiogram chest is probably the gold standard for that but it entails radiation exposure so you don't want to overdue them. As far as the numbers go and what to look for, the key numbers are the valve area in square centimeters (how much of an opening is there,) and the pressure gradients across the valve, particularly the mean gradient. The onset of classic symptoms is the usual trigger for surgical intervention. The American College of Cardiology. American heart Association publishes guidelines that among other things set the parameters for surgical intervention. You can read the guidelines here: http://content.onlinejacc.org/articl...icleid=1838843

I hope this is useful ...others will chime in as well, and I wish you the best in managing your BAV disease. Keep posting your questions.

Jim

 

[epstns]

I originally had an internist (family Dr) who wrote off my decreasing stamina and energy by telling me "You're getting older. Get over it." I was about 51 at the time and had been watching my energy and exercise tolerance decreasing for several years. I finally convinced her to refer me to an endocrinologist for a thyroid eval, etc. It was that endo who asked me "How long have you had this heart murmur?"

Once I had a consult with a cardiologist and learned of my true situation (at the time, moderate to severe aortic stenosis with BAV), I promptly fired the internist. One of the best moves I've ever made.

You do need a thorough evaluation of your valve, as the presence of a bicuspid valve with regurgitation (leak) does not preclude the additional problem that the valve may or may not open fully. If it doesn't open fully, your heart cannot pump enough blood through your body to support athletic activity. Also, if the valve "tightens" too much prior to replacement, sudden cardiac death can result. (Sound familiar?) I am NOT trying to scare you. I am just trying to help you to develop a healthy sense of urgency to find out your complete diagnosis. I had aortic stenosis (narrowed valve) and I believe that my father and two of his sisters died from untreated aortic stenosis. Untreated, these things are very bad. Treated, they are history and we move on with our lives.

Welcome to The Waiting Room - the virtual room where many folks await their own turns at valve surgery. Make yourself comfortable, ask all the questions you want. The folks here have a wealth of first hand knowledge, and they are very willing to share it.

 

[Paleowoman]

Hi - welcome to the forum. Back when I was 25 a doctor first heard the murmur of my bicuspid aortic valve. Had referral to cardilogist and echocardiogram which was inconclusive, but yes, I had bicuspid aortic valve. Fast forward to age 53 and doctor thought I should see a cardiologist again as the murmur was very much more pronounced. Echo then showed pressure gradient of around 33 mm/Hg which is moderate stenosis and I had yearly echocardiograms until I was referred for surgery at age 60 when pressure gradient had reached 68 mm/Hg. I never had any symptoms at all ! Which only goes to show how insidious bicuspid aortic valve can be. Apparently my heart would have been struggling by the time I was referred for surgery, but I was very fit and strong (doing serious weight lifting too *) and I didn't get any symptoms. My surgery was a year ago tomorrow. All those years in the 'waiting room' !

You need to know your pressure gradient, your valve area size, and your ejection fraction. Heart attack isn't associated with bicuspid aortic valve, though sudden death can be if you have gone into left ventricular failure/enlarged heart and nothing has been done about it. They check for those when you have an echocardiogram so they would soon tell you ! Heart attack is caused by atherosclosis which is coronary artery disease, aka blocked arteries which they would check for before valve replacement surgery with CT or coronary angiogram so that they fix the two things at once, but they are not associated - bicuspid aortic valve is something you're born with.

Has your family doctor given you a referral to a cardiologist ? You can do a search on the net at hospitals near you too.

* PS told to cut down weight lifting a few months before surgery as it could have caused 'sudden death' as the steonosis was severe by then.

 

[Halya]

Welcome to the forum, Sgt. G! I'm 46, too, and was diagnosed with BAV and aortic stenosis (mild for now) last March. News like that kind of hits you like a ton of bricks, doesn't it?

I think you're on the right track. You have the diagnosis and it looks like you'll be getting the referrals that will help you find the answers that you need. There is a great deal of information available on the internet and great personal perspective on this forum. Do the research you need, allow yourself to overthink and even freak out for a few days if you need to (I sure did), and then get the information from the doctors that is specific to you.

Don't be surprised if you go through an "everything is a symptom" period over the next few days and weeks. That seems to be a natural reaction and the best remedy is solid information.

For specific information on the numbers, poke around on some of the echocardiography sites for definitions of all the abbreviations on the report. Then, try to let it go and let your doctors give you the interpretations. The progress of this condition is highly individual, so the generic information will only take you so far.

The most important question I've posed to all the doctors (about 6-7 so far), after all the tests, is "do I have any restrictions on activities" and then trusted those responses.

You've got their attention now. Things might move very quickly or maybe you'll be in for a period of waiting. Either way, after years of looking for answers, you will have some assurance that things are being monitored closely and an intervention will be made if needed.

One day at a time and best of luck,

Halya

 

[Agian]

I'm a pre-op 46 year-old too. Small world.
Well said Halya.

 

[pellicle]

Hi and welcome aboard

Last week I went for my yearly physical and my Family Practice Doctor started a new physical regime where does a sonogram of the heart and was diagnosed with a Bicuspid Aorta Valve with a leak.

well (as you yourself say) at least you know what is the problem now. Actually its not (as) bad news (as it could be) for the treatments are actually more successful than almost any other medical intervention around. So that's not the worst thing it could be from.

...This lack of physical activity has kinda made me depressed. Over the years my doctor has told me that I'm just getting older (I'm now 46), ...
I actually feel a bit relieved to finally know why my stamina has fallen off so drastically over the past few years.

its good to know what the root cause is isn't it

I've sort of gone through this twice (I don't remember the first time well so I'll call it twice) and I can say that each time I've had my valve run down its always been clearest in hindsight and clearer even still when it gets fixed.

I have of course had to battle to get my health back to where I want it to be, but I'm sure you'll do the same. It is of course a waiting game in some ways till you do have corrective surgery.

What should I look for in a Cardiologist?

yes

What kind of questions should I ask?

basically I'd ask for his / her opinion on what diagnostics they want done and suggest that you want to get back to normal as soon as you can (before any more permanent or difficult to undo dammage is done to your heart).

I'd also ask them to check carefully for signs of aneurysm ... which is statistically related to Bicuspid Aortic Valve (BAV).

I see a lot of these numbers and measurements but I don't understand all of them.

me neither really and I'm not entirely sure that I need to as I trust the Dr's I see and prefer to work in broader generalisations in that area because 1) I don't have to manage the surgery 2) I don't see the benefit of being an inferior expert to them.

I don't want to seem like I'm over thinking my condition but I'm very concerned.

To me, you aren't over thinking it (based on what you've said here) and I think you're taking prudent and well timed steps.

Both of my Grandfathers died of sudden heart attacks,

I think that's unrelated, but you will probably have some other tests done for arterial congestion eventually ...

So I'd be telling them the symptoms you've described here (and no, I don't think that's aging, I think thats valve acting as a limiter) and asking them how they'd like to proceed.

I had my most recent VR in 2011, and I know that when I was leading up to having that done I knew that things were going south. I had observed over the preceding 3 years that my times on the track were constant despite better technique and I knew that I wasn't going up stairs as well. That plus the gradual adding of weight added up to me to "no surprise" when they said my valve was leaking again. The surprise came to me when they said they'd found an aneurysm which I had fixed in the same surgery.

I now have a mechanical valve and an aortic graft. ... last night I was out running on the beach and despite having sat on my arse these last few months was still able to keep running the entire time and keep my HR below 145.

Feel free to ask about anything, or even PM me if you wish to skype or something just to have someone to listen ...

Best Wishes

 

[Sgt. G]

I really appreciate everyone's support. I called a cardiologist today but his secretary hasn't yet returned my phone call. The office is close to me so tomorrow I plan to walk in to schedule an appointment. My family practice doctors says that they will fax over a copy of my electrocardiogram once my appointment is scheduled.

I'm worried that my cardiologist will have a wait, wait, wait and see diagnosis. I don't mind getting more testing to be thorough but I don't want to prolong the inevitable until I have serious irreversible damage. If this is repairable I prefer to have it repair while my heart is still strong and healthy. I would love to return to running. Running really clears my mind, it's very therapeutic.

Again I really appreciate everyone's support. Looks like I have a lot of research to do.

Thanks,

 

[mcarmical]

I am in a very similar position as you are, pre-op 51 year old. As a child doctors told my parents I had a heart murmur. Nobody every bothered to explain it further. Advance to age 41 when my primary did not like the patterns on my EKG. She referred me to a cardiologist who ordered an Echo. It was then that I was diagnosed with Aortic Stenosis. Initially I freaked, however the measurements stayed in the moderate range. Next year the measurements were the same, and stayed steady for several years. I got to where I did not even worry about it except for selling my free weights, my stair climber, and giving up my long distance jogging. This last December the last echo showed a significant change from the previous year, with key indicators indicating I am now have severe stenosis. I watch valve size and gradient, which are now at .7 and 60. I am not showing the major symptoms however the stairs are suddenly a much bigger challenge. I now have the same anxiety I had when initially diagnosed. I research all I can, and I am doing all I can to ensure I am in the best shape I can be going into surgery, which I am expecting will be mid to late February.

I would recommend watching gradient mainly and valve opening size, those two seem to be the best indicators. There are charts on the internet that will tell you if your measurements are moderate or severe. Understand what they mean and listen to your body. As with any doctor, I looked for a Cardiologist that I feel comfortable with and could build a trusting relationship with. I research all the time, understanding as much as I can eliminates some of the anxiety and fear of the unknown. I am looking forward to getting the procedure behind me and regaining the endurance that I have lost.

​I am now in the process of finding a surgeon. I'll keep you posted on how everything goes.

Mike

 

[epstns]

Keep in mind that there are specific statistics that must be "attained" before a surgeon will agree to operate. Just having a diagnosis does not mean that you can run to surgery when you feel that you are ready. What they actually do is to compare the odds of your death if nothing is done, versus your odds of death in the surgery. I'm not trying to scare you. I'm just trying to prepare you a bit for the thought process that the docs use to decide when it is time to perform the surgery. The fact that you are fed up and tired of the waiting doesn't feed into their decision process.

You need to have a good rapport with your cardiologist, in order to ensure that he/she is aware of your wishes as to timing of surgery (earlier or later) and then use the cardio to facilitate the process with your surgeon.

You should also get a more precise diagnosis and status report from your cardio. In other words, do you have stenosis or "only" regurgitation? What is the level of either (mild. moderate, or severe? Hope it isn't critical.) Once you know these facts, you can discuss potential timing with your cardio, and bring your own wishes into the process at that discussion.

As pellicle noted, the survival rate of these valve surgeries is almost as high as that of a simple appendectomy. The operation is not fearsome to most of us. We more often have our trials and tribulations in recovery, but everyone here has done it.

 

[Sgt. G]

Well I have an appointment next week. Hopefully then I will have a lot less questions. I'm looking forward to speaking to a Cardiologist and finding out where I actually stand as far as my health.

 

[cldlhd]

I'm right around your age ( 45 ) and I was diagnosed in March. It is scary, I did the whole why me thing at first but the universe never answered . As Pellicle said there are a lot of worse diagnosis's out there and better to know about it then get an unpleasant surprise one day. My cardiologist seems to prefer the " watch and wait" approach but the surgeon is much more proactive about surgery. I guess part of that is they're trained to see surgery as the answer plus ,hopefully, he sees a lot of successful surgical outcomes. I'm on the cusp of needing surgery according to the surgeon as my aneurysm is 4.8 cm. He considers 5.0 the trigger point but said he'll do mine if I wanted to so I said what the hell February is a boring month so having it done on the 6th.

 

[shanwow1]

Wanted to chime in, although you got lots of great advice above. I was confused for a long time about my condition, because I had been told I had Bicuspid Aortic Valve, and many people on this site talk about the progression of stenosis as the main indicator for repair or replacement. I see that you mentioned you were told you have BAV with a leak (or regurgitation). I have BAV with minimal stenosis but severe regurgitation. My suggestions is to make sure you get information from your cardiologist whether your valve is stenotic or leaky (or both), it might help you understand the numbers better.

Best of luck with your appointment!

 

[Sgt. G]

Well I had my first appointment with my cardiologist today. I think it went pretty well, my doctor and his staff seem to be pretty attentive and thorough. He previously received the blood work and echo-gram from my family practice doctor. He is reordering the echo-gram because he prefers information from his own staff. He says that he often gets false information from other clinics, so better safe than sorry. He is also order lab work (D-Dimer & B-Type Natriuretic Peptide) and a stress test. I go back to see him next month. I feel confident that I'm in good hands. I appreciate everybody's support.

 

[harrietW]

hi I'm new to this site well not really new I signed up two or three months back but my surgery is coming fairly soon I haven't got a date I go to my doctor at the end of the month and I need mitral and aorta replacement. I also have upper respiratory infection chronic for 5 years and I have interstitial lung disease and I'm getting very concerned. Anxiety level is up l have great difficulty breathing most of the time and worry about post surgery and getting back to normal. I've been dealing with this for 20 months knowing that I had to have open heart and and now here we are. my doctor told me in November that we will start work up in January so I'm I don't know what that means. does that mean I need to have surgery for fairly quickly or in three months is there anyone else with this experience that you can share with me. I I see my my cardiologist on the 26th of January this is the first time in 2 years she doesn't need a new echo done. this is her follow-up and a workup for surgery.My last echo was Nov. . She told me to have a great Christmas and we wil start work up. The first of the year. So herewe are l don't need another echo. So is it go time. I'm freaking out. Anyone ?

 

[Paleowoman]

Hi Harriet - first of all I've never heard of the expression "work up" with regards to having mitral and aortic valve replacment, but you will know when surgery is likely coming very near when your cardiologist refers you to a cardiac surgeon. Did your cardiologist say anything about cardiac surgeons ? My cardiologist told me two and a half years before I was referred for surgery that I should start thinking about the fact that I'd need surgery in a couple of years and that I should think about tissue or mechanical valves and look at the stats for the different cardiac surgeons, hospitals etc. Maybe that's what is meant by a "work up" ? Maybe it's the prep time ? You should corner your cardiologist about this when you see her on 26th.

I have small airways disease, diabetes and osteoporosis so I can understand your concerns regarding having serious surgery when you have other conditions. When I knew my date of surgery I went to see my respiratory consultant, endocrinologist and rheumatologist. They all wrote reports about my conditions which they sent to the cardiac surgeon. Then, before I was admitted to hospital, I filled in a big questionnaire the hospital gave me about my health, plus when I went for the pre-op assessment I went through everything again and gave them copies of my other doctors' reports.

SO - let all medical professionals dealing with you know of your respiratory problem…ESPECIALLY the cardiac surgeon and anaethetist (my anaesthetist was fantastic, he really was) and get a report from your respiratory doc. I'm sure you will be looked after… !

 

[tom in MO]

Hi Harriet. Work-up to me means the things they do to prepare for surgery. It depends upon what you are going to have done. For me it was a discussion with a respiratory person, a tour of the facility, full blood work and a scope out of my veins (angiogram?). This took two visits the angiogram (?) took a half a day. You don't need another echo since the one in Nov. told them it is time for surgery.