Ive just turned 36 and have BAV. At the ehco the other day, they told me i have moderate to severe aortic stenosis. I told them i dont have any symptoms as i dont think i do. eg not really short of breath. I do go dizzy quite a lot but i take citalopram and a side effect is dizziness.
It alarmed me quite a lot as ive recently started to kick my health into shape. Doing a couple of 3-5km runs a week, gym a couple of times a week, and a PT once a week. Im now really concerned on what activity i should be doing. I never get a straight answer on the gym. Should i still go? What can i lift etc? I feel like wrapping myself in cotton wool now and stopping everything. Nothing has changed since last week but now i just know more information and googled too much!
Any advice would be great.
Thanks
Matt
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mattmaw1
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My suggestion is that you keep moving. You possibly know that stenosis is classified as slight then moderate then severe. When severe then you need a new valve. But not quite yet. I took just a few months to go from moderate to severe, but I am twice your age.
Your op will be easier if you are fit and your recovery will be easier if you are fit.
I was ok when moderate. Then got seriously breathless when I needed the op.
My legs also started to give in, I kept falling forwards.
If you do need a new valve, the procedure is major, but pretty fabulous. You will be out of action for a few months, but then you will get your life back.
The op is better than 99% successful. I would urge you to use this BHF site, plus the NHS but do not ask Dr Google. You need facts from people that know, not from people who want to impress.
But you first have a window of opportunity until the stenosis gets severe.
I’m sorry to hear about the aortic stenosis on top of what you’re already dealing with. It’s great to hear that you still want to stay active as much as possible however, I also understand that caution must be taken too for us hearties. I can’t really advise on what would be suitable in terms of attending the gym and lifting with your conditions however, there are BHF cardiac nurses available Monday to Friday 9am-5pm which may be able to offer some helpful advice. I have linked the number below. It might be worth giving them a ring tomorrow.
Hi Mattmaw1I understand why you would be so worried but I think having that extra bit of information always makes you more aware of your condition, I know that does that for me when I get my echo results x I have severe aortic regurgitation and moderate stenosis and sometimes you don't develop symptoms for ages I think thats been the case for me but eventually I will need valve replacement surgery. What did your consultant say about your condition?? Did they seem concerned about the dizziness?? X
Welcome to the forum, sorry to hear you’ve had a shock.
I don’t have any advice relating to your specific condition but I would say try to avoid googling because it can cause more worry than furnish you with relevant and accurate information.
Is it worth having a chat with your GP about the gym query? Ultimately, you know your own body and maybe a chat with your PT will help you to tailor your workouts in a way that will be better suited to what you know now.
Wishing you all the best and hope that you keep us updated with how you get on.
I was totally unaware that I had a BAV until I was diagnosed with severe AS. I'd normalised my symptoms... shortness of breath when exercising mainly, as me being unfit and was just pushing myself even more to improve my fitness.... which would never have happened. At one point when running I "fainted" in thr middle of the road. I know now that it wasn't a faint 😱. The next day I broke my ankle, and actually that was a blessing it made me slow down for couple of months I was told to stay active but... no running, no heavy lifting, no more than 1 flight of stairs, no big hills and basically nothing that got me out if breath. So I walked every day but it was a slow saunter rather than a power walk.
The flown of blood through you valve is severely restricted so any exertion isn't great.
If you are on Facebook and not already a member of UK Aortic and Heart Defects Pre and Post surgery then I'd highly recommend it. Everyone in the group is on your journey, or has been on it.
I had my valve replaced April 21 after 6 months of tests and waiting.
I'm 36 with a leaky mitral valve that (has now got worse) does have a lot of symptoms and I was told by my specialist not to lift anything over 15kg but keeping yourself active and eating healthy is best thing. Luckily my jobs active and I do a lot of walking I have nothing that contains caffeine or artificial sugars.
I lived with moderate to severe Aortic Valve Stenosis (AVS) for 16 years from diagnosis before having valve replaced earlier this year (aged 40). I did regular 5km runs, mixed with HIIT including weights and played walking football. I was always encouraged to exercise regularly as it actually helps to identify when your valve is deteriorating; e.g. you can no longer run the distance you used to do comfortably. As always listen to your body and stop if something doesn't feel right but hopefully you can be reassured that you can still live an active life with AVS.
Sorry to read that you're developing aortic stenosis in addition to BAV. I'm now 3 months post OHS and can offer assurances that surgery, though pretty massive, is extremely well-managed and that you can expect to build back to where you were before once you've been fixed up.
I was diagnosed with a large hole in my heart in December and was very active (just about to go skiing!) and was doing regular runs, commuting by bike 20km a day, HIIT and weight training in the gym etc. I asked my consultant about all of this. He said skiing, running etc all OK. He was a bit cautious about HIIT training as it pushes the heart rate up and down quickly which could add strain that I don't really need, and weight lifting was also to stay below a third of my body weight for now - and this was because the valsalva breathing could push blood the wrong way around my heart, given the hole. I would advise emailing your cardiac team (my ACHD department have a great nursing team who are good on email) to get advice more tailored to your situation, but I hope that my sharing my experience you can get an idea of the sort of thing that might come up.
Keep us posted with how you're getting on, and all the best.
Sounds as though you are in remarkably good shape - though heavy lifting is not wise, Try to cheer up in spite of your problems, Don't let obsessive anxieties spoil what seems to be a very active and pleasant life
HiMy son has a bicuspid aortic valve with moderate-severe regurgitation. His consultant said that he shouldnt do any competitive sports eg running,football,rugby etc and if he goes to gym he can lift toning weights but nothing heavier so definitely check it out with someone. Jules x
Hi, I have moderate aortic stenosis.I was advised by my Cardiologist not to do any aerobic exercises ( previously went to aqua aerobics 3 x a week ) and walked for long periods .No weight lifting, pushing, pulling, hoovering, mopping and not to over exert.He advised 30 minutes walking per day .This was put in writing to my GP. GP discussed SOS procedure with me.I do not have any other health conditions. I have heart and left chest pain and become tired after an activity.I sometimes have palpitations and some breathlessness.I am under the " watch and wait " policy which I find incredibly stressful and damaging to my mental health I am desperate to have my heart valve replaced.
I can relate so much to this, sorry for butting in to your reply to the OP but I also have moderate stenosis and I have severe aortic regurgitation so I am desperate to have mine replaced I agree the wait and see when to have it replaced is killing me, I haven't been advised to stop as much as you but I have been told by my cardiologist to not lift weights of any kind at the gym. I think that's what's had such an affect on my mental health the watching and waiting it's annoying x hope your not waiting to much longer, have they given you a time frame or just eventually you will need a new valve, that's what I have been told like all my life x
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