To Exercise or Not

[Richie Rich]

Hi All,
This is my first post, I've been looking at the forum for a while & found it very informative. My main reason for posting is I was born with BAV which was discovered when I was 15 due it migrane investigations, it's leaked all my life my last scan showed moderate leakage. When I was younger I was convinced I wouldn't make it past 30 so I partied hard & drank too much & generally got very unfit & overweight.
In my early 30s I calmed down adopted a healthier diet and either ran or weight trained five days a weak, I was fitter than anyone I knew. This all changed when my friends father died from aortic dissection possibly caused by an aortic valve issue. I panicked at this news & did lots of research on the internet into my condition which led me to totally give up exercising for two years as I'm worried about enlarging my Aorta & causing my valve to ware out sooner. My cardiologist always tells me no limit on anything but my whole life I've suffered migraines, fatigue & breathlessness so perhaps I shouldn't bother exercising.
I realise weights are not a good idea but recently I've tried a little gentle jogging & cycling & would like to get fit again, I'd like to know what other members do to keep fit and what is safe for someone with a leaking BAV, I assume once the valve is replaced more intense training can be undertaken safely.

Thanks, Richie.

 

[pellicle]

Hi

welcome aboard

Hi All,
This is my first post, I've been looking at the forum for a while & found it very informative.

exersize is good, I was told after I had an aneurysm diagnosed that jogging and swimming was fine, but to reduce the weights. I primarily train weights for endurance anyway, so its typically 3 sets of (say) 15 or 20 reps. I was told also (and its hydraulically logical too) that lower weights would do less hydraulic pressure. I was told to avoid squats as they use the biggest muscles and lift the greatest weights.

Have you seen a doctor? What do they say?

Getting yourself healthy is of great significance to a better operative and post operative outcome.

you only have one life, fight to make it your best

 

[Mentu]

Hi, Richie, I agree that moderate exercise will be a big plus for you if one day your condition requires surgery. If your cardiologist is comfortable with exercise, then you should be able to outline an exercise program that doesn't push your body too hard but improves your cardiovascular health. Should you need surgery, being as healthy as possible will serve you well in recovery. We all have our fears; the trick is to not let them be the ruling factor in our decisions. If you do not trust your cardiologist estimate of what you can do safely, you probably need to find one you can trust. In my experience, getting no exercise when it is possible for you to do so safely may just compound later problems. So, confirm with your cardiologist (or new cardiologist) what you can do without harm and be as healthy as you can be within those limits.

Larry

 

[MrsBray]

I found swimming to be relaxing, and an easy way to stay active without blowing a gasket, so to speak.

I found myself more uncomfortable with higher heart-rates the closer I was to surgery.

I started slow swimming 10 weeks after surgery, and it feels good to be moving again.

I wish I had been more active in the years leading up to surgery.

Please ask any questions you might have!

-Meredith

 

[cldlhd]

I feel your pain-literally . I've had migraines since I was 12 but usually only a few a year although lately I've had more than usual, maybe it's the new medications since my BAV/aneurysm in March or just the stress of it all. Actually had one ruin a perfectly good day at the pool with my family yesterday. As for the working out I've been limiting myself to walks ,swimming and light aerobic. No weights for me until I grow the stones to get the aneurysm fixed. That's actually one of my worries- my surgeon says my valve is easily repairable (which is his recommendation ) but if I get it repaired instead of replacing with a mechanical valve will it "wear out" sooner if I finally get myself back in the gym regularly and lead an active lifestyle (sounds like a commercial) . So I'm still firmly with my rear on the fence.

 

[Ryan CA]

Hey Richie,

I have riden bikes and played sports my entire like with a BAV. I also have an enlargened aorta. Im not saying exercise or dont exercise, your doctor needs to tell you that, but typically, exercise is not going to speed up the degradation of your valve or increase the size of your aorta. They kinda of have a mind of their own and the condition will progress how its going to progress regardless of what you do.

Dissection can definitely be something to be concerned with, but it is extremely rare and your doctor can tell you your risk factor depending on the size and condition of your aorta.

In my opinion, the benefits of exercise far outweigh the risk in most instances...within reason.

Get the information from your cardiologist regarding the size of your aorta, the diameter of your aortic valve, etc and then do some research; you will likely come to your own conclusions on what you should or shouldnt do.

Good luck.

 

[Paleowoman]

Hi Richie,

I too was born with BAV (actually I think that's the only way to get a BAV, by being born with one ) I was lifting heavy weights (yes really even though I'm not a guy !) until about six months before surgery and then still carried on lifting weights, though not quite so heavy as I was told not to, regardless as I felt very fit doing so. I also did a lot of walking, especially hill walking. I think it's important to listen to both your cardiologist and your body. How often do you have echos ? Has the cardiologist said you have an enlarged aorta too ? Dissection/enlarged aorta doesn't always go hand in hand with BAV. Do you know your pressure gradient ? And when the cardiologist thinks it's likely you will have your aortic valve replaced ? It's so important to be as fit as possible before you have this type of surgery !

 

[Richie Rich]

Hi All,
Thanks for all the replies & good advice, it's good to have opinions from people with this condition as well as doctors. My cardiologist won't specify what I should be doing as he believes I should live a full life until I need an operation & he says that although I have some thickening of the aorta, both this & the leaking valve are fairly stable on my echos which I have two yearly.
I know I need an op one day because of how noisy my valve sounds, doctors are always shocked I'm not in a worse state & my cardiologist always gets medical students to listen to it as an example of a "good murmur". My cardiologist refuses to discuss it as he can't predict when until it gets worse & as I'm an NHS patient I can't get another opinion. I think I will just try to build up my gentle jogging & cycling. I'd love to do some weights to get my physique back but I can't trust myself to stick to high reps as I was addicted to high intensity weight training & Olympic lifts & always pushed to the
limit. This is partly why my friends fathers death freaked me out so much, I know heavy lifts can be risky with this condition both short & long term. Once I get into a routine I'll update my progress.
Thanks, Richie.

 

[AZ Don]

Exercise is good for you even with a BAV. I know more about exercising with an aneurysm, (see my post here: http://www.valvereplacement.org/for...se-and-stress-with-Aortic-Aneurysm&highlight=) but I think similar guidance would be appropriate for a leaking BAV. Because I've had an aneurysm I've been advised to take it a little easy with my exercise. Here's how I apply that advice. First, exercise doesn't have to be a competition. When I'm lifting weights now, when I feel challenged, rather than try to push through like I used to, I just stop. The exercise is still helpful. Also, I generally use lighter weights and more repetitions. Same applies with aerobic exercise. I still swim but I don't push myself on sprints like I used to and if I'm doing more distance I take a break every couple hundred meters.

 

[Paleowoman]

I know I need an op one day because of how noisy my valve sounds, doctors are always shocked I'm not in a worse state & my cardiologist always gets medical students to listen to it as an example of a "good murmur". My cardiologist refuses to discuss it as he can't predict when until it gets worse & as I'm an NHS patient I can't get another opinion. I think I will just try to build up my gentle jogging & cycling. I'd love to do some weights to get my physique back but I can't trust myself to stick to high reps as I was addicted to high intensity weight training & Olympic lifts & always pushed to the limit.

Hi Richie,

I think cardiologists can't always predict when someone will need aortic valve replacement. The fact that your echos are two yearly gives you an indication though as they generally up them to one yearly and then six monthly in the run up to surgery. Did you explain to your cardiologist that you do high intensity weight training ? I know that most doctors don't understand these things unless they do weight training themselves (my rheumatologist was a British champion !). I was advised once by a weight training doc on the internet to get a YouTube video to show my cardiologist the sort of training I do so that he could get a better idea and judge better whether it was okay to do or not. I don't know if you could do that ?

Re the murmur - I was used as a patient in the MRCP PACES exam (the one which doctors do who want to advance to consultant level) - they had to work out exactly what my murmur was due to and the course of action to take…plus lifestyle advice, exercise, heavy lifting

 

[MarkU]

I was diagnosed with BAV at age 5. I was never given any restrictions and was asymptomatic until age 47 when I started to develop shortness of breath, chronic fatique and suffered from ocular migraines.

Although I didn't develop noticable symptoms early, I did do some damage to my heart. I developed some left ventricular hypertrophy, or enlargement of the left ventricle as it was overworked in trying to keep up with my leaking valve. This wasn't picked up until I had a catherization just before my surgery. Fortunately for me, the enlargement reversed itself within a couple of years after getting my new valve. But at the time of my AVR, my surgeon feared that I might have done some permanent damage to the heart muscle.

My best advice would be to discuss your concerns with your doctor. If you do continue to exercise, consider low-intensity activities like walking, light weights, cycling, swimming, etc. Walking is probably the most underated form of exercise.

Good luck,
Mark

 

[Richie Rich]

Hi Richie,

I think cardiologists can't always predict when someone will need aortic valve replacement. The fact that your echos are two yearly gives you an indication though as they generally up them to one yearly and then six monthly in the run up to surgery. Did you explain to your cardiologist that you do high intensity weight training ? I know that most doctors don't understand these things unless they do weight training themselves (my rheumatologist was a British champion !). I was advised once by a weight training doc on the internet to get a YouTube video to show my cardiologist the sort of training I do so that he could get a better idea and judge better whether it was okay to do or not. I don't know if you could do that ?

Re the murmur - I was used as a patient in the MRCP PACES exam (the one which doctors do who want to advance to consultant level) - they had to work out exactly what my murmur was due to and the course of action to take…plus lifestyle advice, exercise, heavy lifting

Hi Anne,
Although my cardiologist looks fairly lean, he doesn't look like he's ever squatted with an Olympic bar across his back so I doubt he understood the level of exertion used when he said "no limits on exercise". There is no way I'm venturing near the big weights in a gym again, who knows how much damage I've done with all that heavy lifting, but no one told me there was any risk to my valve or aorta. Ignorance was bliss when I was in the best shape of my life, but I'm wondering at what cost. I may buy one of those sets of little weights to do some high rep toning in between my low intensity jogging & cycling. Sounds like the training programme of a 20 year old girl LOL.

 

[Richie Rich]

I was diagnosed with BAV at age 5. I was never given any restrictions and was asymptomatic until age 47 when I started to develop shortness of breath, chronic fatique and suffered from ocular migraines.

Although I didn't develop noticable symptoms early, I did do some damage to my heart. I developed some left ventricular hypertrophy, or enlargement of the left ventricle as it was overworked in trying to keep up with my leaking valve. This wasn't picked up until I had a catherization just before my surgery. Fortunately for me, the enlargement reversed itself within a couple of years after getting my new valve. But at the time of my AVR, my surgeon feared that I might have done some permanent damage to the heart muscle.

My best advice would be to discuss your concerns with your doctor. If you do continue to exercise, consider low-intensity activities like walking, light weights, cycling, swimming, etc. Walking is probably the most underated form of exercise.

Good luck,
Mark

Hi Mark,
I'm definitely going to stick with low intensity now, I think it will keep me fit enough whilst minimising the risks associated with exercising. My plan is to try & make my valve & aorta last as long as possible now, the thought of surgery terrifies me, big respect to all of you who have been through it.
Thanks, Richie.

 

[Richie Rich]

Exercise is good for you even with a BAV. I know more about exercising with an aneurysm, (see my post here: http://www.valvereplacement.org/for...se-and-stress-with-Aortic-Aneurysm&highlight=) but I think similar guidance would be appropriate for a leaking BAV. Because I've had an aneurysm I've been advised to take it a little easy with my exercise. Here's how I apply that advice. First, exercise doesn't have to be a competition. When I'm lifting weights now, when I feel challenged, rather than try to push through like I used to, I just stop. The exercise is still helpful. Also, I generally use lighter weights and more repetitions. Same applies with aerobic exercise. I still swim but I don't push myself on sprints like I used to and if I'm doing more distance I take a break every couple hundred meters.

Hi Don,
What size weights do you use, how many sets & reps & which exercises?
Thanks, Richie.

 

[AZ Don]

A simple approach is to use a weight you can lift at least 20 - 25 times for 1 or 2 sets. I do basic exercises: bench press assisted pull ups, overhead press, curls. I also bike, hike, & swim.

As mentioned it is always good to consult with your Dr's.

 

[Paleowoman]

Although my cardiologist looks fairly lean, he doesn't look like he's ever squatted with an Olympic bar across his back so I doubt he understood the level of exertion used when he said "no limits on exercise". There is no way I'm venturing near the big weights in a gym again, who knows how much damage I've done with all that heavy lifting, but no one told me there was any risk to my valve or aorta. Ignorance was bliss when I was in the best shape of my life, but I'm wondering at what cost.

Did you know that Arnold Swartzenegger had BAV ? He was obviously lifting really heavy weights before his aortic valve replacement….and he resumed lifting afterwards.

It's a pity cardiologists don't know more about weight lifting. Certainly my weight lifting didn't harm my aortic valve (e.g. leg press I was lifting 200 kgs (441 pounds - which is a lot for a middle aged woman) and leg press probably put the most strain on my heart) and when I had my echo just before referral for surgery the technician asked me "do you do weight lifting ?" - I was really surprised thinking he could tell from my upper body muscle tone, but no, he could tell from the strength of my heart muscle ! I was really pleased (not pleased that I can't yet go back to that level of weight lifting), but everyone is different and, like I said, people need proper guidance from medical professionals.

 

[Richie Rich]

Did you know that Arnold Swartzenegger had BAV ? He was obviously lifting really heavy weights before his aortic valve replacement….and he resumed lifting afterwards.

It's a pity cardiologists don't know more about weight lifting. Certainly my weight lifting didn't harm my aortic valve (e.g. leg press I was lifting 200 kgs (441 pounds - which is a lot for a middle aged woman) and leg press probably put the most strain on my heart) and when I had my echo just before referral for surgery the technician asked me "do you do weight lifting ?" - I was really surprised thinking he could tell from my upper body muscle tone, but no, he could tell from the strength of my heart muscle ! I was really pleased (not pleased that I can't yet go back to that level of weight lifting), but everyone is different and, like I said, people need proper guidance from medical professionals.

Iv read about Arnold, it seems some people can get away with more than others, something to do with connective tissue disorders & how severe it is, some people don't have any enlargement of the aorta even after weight training for years. I think this is all down to luck & how far you want to push it, so I think ill play it safe to keep my aorta as small as it can be.

 

[cldlhd]

I was recently diagnosed with BAV with an ascending aneurysm. I used to lift a lot of weights , a mix of power lifting and bodybuilding, and since I obviously have the connective tissue aspect I can see how the lifting could 'encourage' the aneurysm. To be honest I haven't been hitting the weights as much in recent years and not at all since the diagnosis but once the aneurysm is replaced I can definitely see myself back in the gym I'll just probably use lighter weight combined with more aerobic exercise like basketball, biking and swimming. I just hope the Dr removes any tissue that looks like it could potentially get an aneurysm.