14 year old with BAV- Exercise questions

[terry_scott]

Hi All:

This is my first post. I'm looking forward to learning from you. My 14 year old daughter Rebecca was born with a BAV; she had PDA surgery as a baby. She currently has moderate regurgiation in the BAV and minor regurgitation in her mitral valve. We go back to see her pediatric cardiologist next week for her regular 6 month check-up, EKG, and echo.

She is passionate about sports (currently plays soccer and basketball) and is a very good athlete. She wants to play soccer in high school and also on a club soccer team-- very competitive level for both teams with intense conditioning. When her BAV was discovered a few years ago, we were advised to avoid weightlifting/isometric exercises and she adheres to those restrictions. At the last appt with her pc, the doc raised the issue of whether she should be playing competitive sports because her AV was leaking a bit more than it had been. At my request, the pc consulted with the senior docs in her practice; after reviewing Rebecca's test results, they agreed she could still play (her LV is a little enlarged but there is good output from the heart and it is pumping well, and the leakage was only a little worse than it had been. I don't know exact numbers-- it may be around 2+???).

Rebecca did have a couple of incidents during soccer season this year that worried me-- during her first game, she was feeling very overheated and out of breath, drank tons of water and poured it on her head to try to cool down, and said she was feeling like she had the "taste of blood" in her mouth. She stubbornly kept playing the game and the feeling passed-- she told me she thought she just was out of shape. (She has complained of the "taste of blood in the mouth" before-- after mile runs in P.E. at school. She usually never complains when she's running in a soccer game.) After that first game, she seemed fine except for one other similar instance after the Christmas break (but the symptoms weren't as strong.) I'm worried about what is going on, and trying to prep for her appt. next week.

Have any of you experienced these symptoms? What does it sound like to you? Has anyone been told that strenuous aerobic exercise will make the BAV leak more, or is this something that might progress whether or not she is exercising? Is some exercise a good thing because it keeps her in shape? Have any of you been advised to not run? Should she have other tests to see what her heart is doing under stress? Any other advice as far as what I should be asking the docs? Our primary concern is her long term health and avoiding valve replacement surgery as long as possible-- but she's a very stubborn kid and it's going to be a fight to get her to give up the sports if that is the ultimate recommendation.

Thanks for your help-- sorry this was so long...

Terry Scott

 

[Mary]

Glad you're here!

Glad you're here!

Hey Terry, and Welcome!

We have a group of mom's on site who have children of varying ages with valve issues. I expect one of them will wander by pretty soon to tell you of their experience.
We also have an Active Lifestyle forum that has regularly contributing members who all lead very active lifestyles; not only before, but also after replacement. I imagine one of them will also wander through and give you some sources of reference material to take a look at.
In the meantime, I just want to welcome you and tell you that you will get answers; it just may take a little bit.
Please stay with us, and know that you have found the right place to look for information and support for all types of valve issues.
Mary

 

[Emma]

Hi Terry, Welcome to the group.
I'm a heart mum too. Chloe is 6 and has an artifical mitral valve after 2 failed repairs on it. After her initial diagnosis and repair on a complete AVSD, her tricupsid and mitral leaked. Tricuspid does well with its repair and just leaks slightly now but mitral wouldnt hold on repair so was replaced and now Chloe takes warfarin - which, in my opinion, is not as bad as it sounds.
Chloe is a lot younger than your daughter so I can't comment too much on the exercise bit, other than Chloe too is very energetic and will not be held back from doing whatever she wants - warfarin or no warfarin! Our heart children are tough arent they!
There are some mums of teens on here though and I'm sure they'll be along to help on that issue soon - Lynn and Jeanne to name a couple.
As for tests to see how her heart performs under stress - has Rebecca had a stress test yet? (Or exercise test - where they monitor the heart rate, BP and SATS etc as she runs and walks).
I'm afraid I don't know whether exercising could make the valve worse, I wouldnt have thought so but that would be a question for your cardi appointment I suppose.
Is Rebecca on any medication?? When Chloe's LV started to get enlarged as you said your daughters is beginning to do, she was started on captopril to help the heart out. She still takes enalapril now, even with a replacement, just as a precaution to prevent her heart enlarging as she grows with the small leaks she still has.
I'm sorry I havent been a lot of help but I'm happy to try and help with anything else you need to know - or just to chat if you feel the need.

Hope the appointment goes really well and all your questions are answered.
Look forward to getting to know you and Rebecca better
Love Emma
xxx

 

[Lynlw]

Hi Terry I'm glad you took my advice and joined. I know some of the BAV, like Aussie will be a great help, Lyn

 

[aussigal]

Hi Terry...

Did someone call me! ...

2 of my 3 sons have the ole BAV and so-far are not under any restrictions except those dished-out by an anxious mum!

Their Cardio says they are fine to do all sports although I have told them I prefer them not to do the weight-lifting and judo-type stuff which being boys they would really want to do...

What I have managed to get them to do is to slow-down and accept their limitations...by this I mean that I have told them to rest of they ever feel out-of-breath or dizzy...we live in sunny Perth Australia and frequently have temperatures over 100 F for a month or more...

The youngest of my boys is the worst affected and he gets short of breath (SOB) more often than the elder boy and he has regurgitation of both the mitral and aortic valve, he also has a dialated ascending aorta (possibly the beginning of an aneurysm)...the elder boy rarely complains of any ill effects...

All 3 boys have had the all-clear from their Cardio although I would like to have the 2 BAV boys on a small dose of beta-blocker because I have noticed they get the same dodgy high blood pressure I have...

I have also previously contacted Arlys at the Bicuspid Foundation, she is fabulous and I keep in contact with her. Now because you are a local you could call her for some more info!...


It is intersting you mention she has talked about the taste of blood...I too have noticed this myself and also the smell of old blood in the back of my nose/throat...annoyingly tho I have always forgotten to mention it to my doctors...I need to put it on my list for next-time.

Welcome to our group...I am sure we will get to know you well in the next few months as you go through all the learning...I know I craved for knowledge once we had the diagnoses...

But yeah...her doctors advice is correct . Your daughter will know her limits...I came to know my limits early-on...There is a list around of exercise limits and I will see if I can locate it...or another member might be able to find it before me...the only limits I really impose on the boys is to keep them active which keeps their lungs in tip-top condition but to not over-exert themselves and to remember to rest if they get tired, and to avoid lifting anything over half their body weight.

Good luck in your journey...

Kids have a great prognosis where this is concerned...

all the best
ton

 

[Susan BAV]

From the beginning of my school years, my doctors insisted I not be allowed to participate in any physical education programs and it was a constant source of embarrassment to me because I looked (and felt) healthy. I grew up in a small town, though, so I walked or rode my bike everywhere, swam like a fish all summer, and kept very fit. Every springtime I would beg my dad, but to no avail, to let me be in Track; but that was one of the biggest things the doctors didn't want me doing, that and lifting weights. I would play softball throughout the summer but my dad was the coach and kept an eagle-eye on me because this was another thing I wasn't supposed to be doing.

I was diagnosed with a heart murmur at birth but I don't know when the doctors knew exactly what was wrong with my heart. I had my first angiogram at about age 12, and a COA repaired at age 17 and the BAV replaced two and a half years ago, at age 42.

Several years ago, in some (older) cardiology book I was reading, I read that the average life expectancy for a young person with [either BAV or COA or both] was 15 years of age -- that shocked me. I don't remember what book it was though, probably something I found at the public library.

I hope this information is useful and not discouraging. It's just the experience I had.

 

[clouddancer22]

Hi Terry!

Hi Terry!

Hi Terry, I am also new here. What is PDA surgery? Sorry, but I get so confused by all the abbreviations and whatnot. Apparently I have been fed the watered down version of my daughter's statistics for 16 years. "Good, moderate, fine, Okay, a little, don't worry about it, . . ." These were the terms I always got.

Thank goodness for this site, I have since learned alot. I now know that my daughter has a BAV which is stenotic, with leakage of 2+. I also know that her pulmonary valve is leaking at a 1. She had emergency surgery at 3 mo. to open the BAV, and several valvioplasties since then to open it more, the last being a couple of weeks ago.

I was initially told that she shouldn't do anything, that tieing her to a chair would be best for her heart, but not so good emotionally - I guess that was supposed to be a joke. I still enrolled her in dance, and eventually was told that I made a good choice - huh, that is not what they told me initially. Since then I have continued to follow my instincts, not what "they" say.

She has been on the swim team for 7 years now, a summer time activity. Initially "they" didn't like it, but now they say it is a good thing. I have always kept her out of basketball and soccer, much to her chagrin, but allowed softball. Also, she is in music, is the lead clarinetist at her High School, I am thinking also good for the heart/lung function.

She joined the track team this year, as a shotputer. I did not like that, but let her go on for a short while. After the last valvioplasty, they finally told us, after 16 years, no lifting. I don't think "they" are really thinking about us, I take it upon myself for my family's health, can't rely on other ppl. But thank God they finally said that, track is out now, and the teachers at her school have to provide heavy text books in the classroom for her so she doesn't have to lug such a heavy backpack to school.

I am sorry, I have probably been of no help at all to you. Just trying to share a teenager's life. I am still trying to work life out. Probably never will get it right, but that is ok, as long as my daughter, and other 3 kids are happy. (((hugs)))

 

[clouddancer22]

Hi Terry!

Hi Terry!

Hi Terry, I am also new here. What is PDA surgery? Sorry, but I get so confused by all the abbreviations and whatnot. Apparently I have been fed the watered down version of my daughter's statistics for 16 years. "Good, moderate, fine, Okay, a little, don't worry about it, . . ." These were the terms I always got.

Thank goodness for this site, I have since learned alot. I now know that my daughter has a BAV which is stenotic, with leakage of 2+. I also know that her pulmonary valve is leaking at a 1. She had emergency surgery at 3 mo. to open the BAV, and several valvioplasties since then to open it more, the last being a couple of weeks ago.

I was initially told that she shouldn't do anything, that tieing her to a chair would be best for her heart, but not so good emotionally - I guess that was supposed to be a joke. I still enrolled her in dance, and eventually was told that I made a good choice - huh, that is not what they told me initially. Since then I have continued to follow my instincts, not what "they" say.

She has been on the swim team for 7 years now, a summer time activity. Initially "they" didn't like it, but now they say it is a good thing. I have always kept her out of basketball and soccer, much to her chagrin, but allowed softball. Also, she is in music, is the lead clarinetist at her High School, I am thinking also good for the heart/lung function.

She joined the track team this year, as a shotputer. I did not like that, but let her go on for a short while. After the last valvioplasty, they finally told us, after 16 years, no lifting. I don't think "they" are really thinking about us, I take it upon myself for my family's health, can't rely on other ppl. But thank God they finally said that, track is out now, and the teachers at her school have to provide heavy text books in the classroom for her so she doesn't have to lug such a heavy backpack to school.

I am sorry, I have probably been of no help at all to you. Just trying to share a teenager's life. I am still trying to work life out. Probably never will get it right, but that is ok, as long as my daughter, and other 3 kids are happy. (((hugs)))

 

[Mary]

Terry,
These are guidelines for exercising with aortic stenosis; I don't know if there are similar ones for regurgitation. This information was posted last summer by Burair on the Active lifestyle forum. BillC. has also posted alot of information about this subject.

Originally Posted by ACC/AHA Guidelines for the Management of Patients With Valvular Heart Disease
d. Physical Activity and Exercise. Recommendations for physical activity are based on the clinical examination, with special emphasis on the hemodynamic severity of the stenotic lesion. The severity can usually be judged by Doppler echocardiography, but in borderline cases, diagnostic cardiac catheterization may be necessary to accurately define the degree of stenosis.

Recommendations on participation in competitive sports have been published by the Task Force on Acquired Valvular Heart Disease of the 26th Bethesda Conference (105). Physical activity is not restricted in asymptomatic patients with mild AS; these patients can participate in competitive sports. Patients with moderate AS should avoid competitive sports that involve high dynamic and static muscular demands. Other forms of exercise can be performed safely, but it is advisable to evaluate such patients with an exercise test before they begin an exercise or athletic program. Patients with severe AS should be advised to limit their activity to relatively low levels.




Quote:
Originally Posted by Journal of the American College of Cardiology
Volume 45, Issue 8 , 19 April 2005, Pages 1334-1340

36th Bethesda Conference

Task Force 3: Valvular heart disease

Robert O. Bonow MD, FACC, Chair, Melvin D. Cheitlin MD, FACC, Michael H. Crawford MD, FACC and Pamela S. Douglas MD, FACC

Evaluation

Continuous-wave Doppler echocardiography can reliably estimate the severity of AS, especially in the presence of normal cardiac output, which is the case in the great majority of those engaging in competitive sports (13).

Symptoms of dyspnea, syncope, or angina pectoris occur late in the course of AS (14), and the likelihood of sudden death increases significantly with the onset of symptoms. Because even transient symptoms are so important in marking the onset of increased risk of sudden death, the physician must be aware that dyspnea, near-syncope, and even syncope are likely to be unreported in competitive athletes. Although sudden death is more frequent in symptomatic patients with severe AS, it may also occur in completely asymptomatic patients (15). When doubt persists with regard to the severity of AS after Doppler study, or if a patient with mild-to-moderate AS has symptoms, cardiac catheterization should be performed. Sudden death is rare with mild AS.

Athletes with a history of syncope, even with mild AS, should be carefully evaluated by a cardiologist. This should include assessment of arrhythmias with exercise. Syncope should be regarded as a possible surrogate for spontaneously aborted sudden death and should be thoroughly investigated (see Task Force 7: Arrhythmias).

Severity of AS measured by continuous-wave Doppler echocardiography (or in those instances previously noted by cardiac catheterization) is categorized as follows with respect to the calculated aortic valve area: mild = greater than 1.5 cm2; moderate = 1.0 to 1.5 cm2; and severe = less than or equal to 1.0 cm2 (5). This translates roughly (assuming that athletes have normal cardiac output) to the estimated mean aortic valve pressure gradient as follows: mild = less than 25 mm Hg; moderate = 25 to 40 mm Hg; and severe = greater than 40 mm Hg (5).

Because AS is often progressive, periodic re-evaluation at least yearly is necessary and should be performed by a physician with expertise in cardiology. This reassessment includes physical examination and Doppler echocardiography, but may require cardiac catheterization in selected patients as previously noted. In addition, Holter monitoring with intense exercise resembling competition is recommended to detect ventricular arrhythmias in patients with AS who wish to participate in competitive athletics.

In patients with AS, a markedly elevated cardiac output or peripheral vascular resistance for sustained periods of time could result in an exaggerated valvular gradient and a marked increase in LV systolic pressure. Given these precautions, the following recommendations can be made.

Recommendations:

1 Athletes with mild AS can participate in all competitive sports, but should undergo serial evaluations of AS severity on at least an annual basis.

2 Athletes with moderate AS can engage in low-intensity competitive sports (class IA). Selected athletes may participate in low and moderate static or low and moderate dynamic competitive sports (classes IA, IB, and IIA) if exercise tolerance testing to at least the level of activity achieved in competition demonstrates satisfactory exercise capacity without symptoms, ST-segment depression or ventricular tachyarrhythmias, and with a normal blood pressure response. Those athletes with supraventricular tachycardia or multiple or complex ventricular tachyarrhythmias at rest or with exercise can participate only in low-intensity competitive sports (class IA).

3 Patients with severe AS or symptomatic patients with moderate AS should not engage in any competitive sports.



Burair
__________________
Burair
Severe asymptomatic bicuspid aortic stenosis Sep 2004
Ross Procedure with root replacement. Dec 2004
Surgeon: Jan Quaegebeur
Cardiologist: Marlon Rosenbaum

 

[clouddancer22]

Terry

Terry

please don't take my post too seriously. Mary knows so much more.

 

[clouddancer22]

Oh, important other BAV stuff.

Oh, important other BAV stuff.

Yes, I am thinking more clearly now. BAV is bicuspid aortic valve, right? Well, I do have to add something here, although I am clearly ignorant. My father called the other day, wanted to know about BAV. Evidently, he was just diagnosed, and wanted to know details about my daughter. Well, this awesome man is 75 years old, has bicycled 100 miles in a day, has run 10K's with me, has been my scuba instructor, etc. A very healthy lifestyle. And he is just now finding out about it?? Must mean it can be ok, but I guess we are all different.

And since my dad and my daughter have BAV, I am suspicious about myself as well. Doctors keep saying I have a murmur, like my dad's doctors all these years, but nothing is done or checked since we are the "essence" of health - slim, tall, sports people . . . Yes, I have done alot of 10K's, skydiving, scuba, hang gliding, hiking, all kinds of stuff (you don't want to know actually)

 

[Ashley]

Hi Terry,
I would see what your doctor thinks about your daughter undergoing an exercise stress test (performed on a treadmill). I have a stenotic bicuspid aortic valve, and have had one of these tests a few times, in an effort to determine "safe" exercise levels. I am not familiar with limitations set for those with a regurgitating valve -- so definitely ask your cardio. I was 15 when I was diagnosed, and my heart was enlarged at the time, so any exercise was a definite NO. After a valvuplasty my heart returned to normal, and I was give zero restrictions. Currently, they are saying NO weight lifting NO competitive sports (I am also a soccer player), but more or less anything else I feel comfortable with is okay. My cardio told me that they don't like us valvers playing competitive sports due to the risk of impact. Definitely discuss it with your cardio, and see if a stress test might be appropriate for yoru daughter. It might make everyone feel more comfortable with her exercising.
All the best
Ashley

 

[Mary]

please don't take my post too seriously. Mary knows so much more.

Nope, Mary doesn't know much more. And no one knows your experience except you.

Mary just reads what other' members find in their research, and tries to match people up with the source of information.

 

[JeanneImp]

We go back to see her pediatric cardiologist next week for her regular 6 month check-up, EKG, and echo.

Terry Scott

Are they doing a stress test??? A Holter??

My advice would be to ask the PC! Only they can tell you what she can and can't do. Each one of our kids have different strengths and weaknesses, no matter how much alike they may seem.

 

[francie12]

Hi, Terry--We are in a very similar boat with our son. He will be 14 yrs. in June, has a BAV with moderate regurgitation and is an enthusiastic sports player. We had exactly the same questions a year and a half ago when Matt's murmer was first heard and diagnosed. I've closely questioned--let's see--four cardiologists about it, and I'm happy to share their advice. All of them agree that at this level of regurg. cardiovascular exercise is fine. Our last cardio. (the one we really like and intend to stay with) made a point of leaving the examination room and coming back, research studies in hand, to prove it to me. I had specifically asked him about going out for track, and I saw him giving it some real thought before seeking out the research and coming back with his answer (love the guy). It is beneficial to have a heart in strong and healthy condition, particularly if surgery is anywhere in your future. Weight lifting of any kind is a no-no, though.
One possible difference in our two cases is Matt's dilated ascending aorta. This was one factor in the decision to start on an ACE Inhibitor, Lisinopril. This med, we were told, relaxes the vessels and gives the heart a break in not having to pump as hard. We will see what the results of a year on Lisinopril have been when we go to the our echo appointment in three weeks. Hoping to see aorta and LV dimensions remaining stable!
About the symptoms you described, the only times Matt has been dizzy have been when he has not been drinking enough water to stay well hydrated while doing sweaty sports, don't know about the taste of blood, though. It is possible that he might have a little less endurance than his peers--he seems to tire a little before the others, even though they are at about the same level of conditioning.
One great thing that we stumbled upon in the process of ruling out Marfan Syndrome (he doesen't have it, whew) was the Pediatric Geneticist. She is up to speed on the heritability of BAVD and TAA, Thoracic Aortic Aneurysm syndrome, and all things connected with it. She has prescribed an MRA (MRI with contrast) of Matt's whole aorta to be done in the summer, because of potential connective tissue problems that can go along with a BAV. Her input is giving us the peace of mind that comes with knowing all the details of our son's condition and knowing that every base that can be covered is being covered. The bigger teaching hospitals often have pediatric geneticists as part of their connective tissue disorder clinics.
Hope this is of some help. Hope this isn't more than you wanted to know!!! It was an incredible boon to me to have found this site just when I needed it the most. Keep us up with how you're doing.

 

[PJmomrunner]

It sounds like your daughter's doctors are watching her heart very closely with thorough six month checks of her heart. To be super-safe, it would not hurt to monitor the size of her ascending aorta, since BAV's so often are accompanied by aneurysms. If her aorta is of a safe size and her valves remain stable, I would say "play on!" Since symptoms are predictive of problems, her body will likely tell her to slow down if and when she needs to. (I would not advocate relying on her body's cues alone, I say that because she is also being monitored so closely by her doctors, BTW.)

If she only has had fatigue issues in the first game of a given season, she's probably correct that it's due to a lack of conditioning. It might be easier on her heart and lungs if she were to maintain her cardio fitness between seasons, rather than force them to yo-yo between intense activity and relative inactivity. Also, as I'm sure you know, most heat related problems can be avoided by drinking plenty of water and sports drinks before, during, and after exercise or a game. Beware the coach who claims drinking water during athletics will cause cramps (it amazes me how many soccer coach-parents have told this to my kids!). Of course, the contrary is true--cramps are caused by the depletion of water and salt.

 

[terry_scott]

14 year old with BAV- Exercise questions

Hi Everyone:

This is Terry, mom to Rebecca, and poster of the original thread. Just wanted to say thanks to all for the info. I read through the archives and also your replies so I now feel more prepped for our appt. next week. I will definitely ask about the stress test.

To clouddancer22: PDA stands for patent ductus arteriosus. The ductus arteriosus is a small vein that shunts blood to the lungs when the baby is in utero. For most people, this vein closes off within 24 hours of birth. When it does not, it is called "patent." Rebecca had surgery at 9 months to ligate it. At the time, her heart was the size of a normal 4 year olds and she had to be on high blood pressure meds for a while until things leveled off. She does have a complex medical history so we make the rounds of the docs She was born with VACTERLS which in her case means that she was born with an assortment of birth defects-- In addition to the heart probs, she also has vertebral anomalies along with incomplete development of the anus/rectum. She's been through 5 major surgeries to repair what could be repaired and she's an amazing kid... if you met her, you'd never guess there was anything wrong with her. She's a phenomenal athlete and I'm really hoping she can continue with the sports for a long time. For us, the heart thing has been pretty minor compared to some of the other problems. The mitral valve leakage is trivial and we used to only see cardio every 2 years (once we got past the PDA surgery and recovery). The BAV was discovered in an echo at age 8 or 9; at that point we switched to annual appts, and within the last 2 years, to every 6 months. She doesn't do any weightlifting (she was on a rock climbing team for a while but gave it up). In general, she's really drawn to the extreme sports and hates having any restrictions at all so I just want to make sure that we're informed and she's/we're making good choices for her long term heart health.

Thanks again-- I'll update after our appt.
Terry

 

[clouddancer22]

Terry

Terry

Oh Terry, I know what you mean! My 'lil baby is 16 now, and we are still finding new things! The heart thing is definitely not minor, but she has had two foot surgeries to restructure the bones, pretty major, a palate restructuring, and now we have an appt with a urologist because of kidney and spleen abnomalies.

But like you said, you would never know. I had to go to her classrooms last week, to make sure textbooks were on hand because of the no lifting thing. Wow, some of her teachers were soooo suprised! Actually, almost all of her teachers had no clue, because she is so awesome, does so much! Maybe not the star athelete like your child, but you would be surprised what a 'lil girl under five feet tall can do!!

Looking forward to hearing from you, Ursula

I

 

[aussigal]

WOW Terry...she sure has had her fair share of troubles for a young girl

My boys are so lucky in that they havent had any other problems as yet...

PJ mentions monitoring of her ascending aorta ...I agree,,,definately ask for hers to be checked and to keep an eye on the size of it ...it seems to be very common for us BAVers to have this area enlarge, my 10 yr old also has an enlarged aorta...

Keep asking questions and we will try help as much as we can...
like Mary says we remember our members and we usually also put it briefly in our signature lines too cos it all helps...

all the best

healthy lungs are very important for Rebecca... excellent work so far!

 

[Mary]

Terry,
Please check out the thread, On a Search: The Winner Gets a Prize.
In it, several members report the taste of blood after strenuous exercise. Please follow the link that Tobagotwo posted; it's a reply from a member who said that was one of his symptoms presurgery.
Good luck with Rebecca's appointment.
Mary