Hi, new here. I have a bicuspid aortic valve. My last echo was 3 years ago when the ascending aortic aneurysm was measured at 4. I was told this was fine and I may need a valve replacement in my 50s, I was 35 at the time, now 38. But I was under the impression I may never need an operation as I have no symptoms that are registered and I thought it might not grow. I've just seen a cardiologist (not my usual one) who's told me its reached 4.6, I need a CT and I now might be facing surgery in a few years. Is this true? Also should I stop carrying heaving shopping etc? Is that sort of think putting a strain on it? Also I've had a very stressful few years, could that have contributed to the increase?
Many thanks
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Daunted
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I would think heavy lifting and stress are unhelpful as they could increase blood pressure, a risk factor. It is worth ringing the BHF nurses tomorrow as they will be far more knowledgeable.
I had my ascending aorta replaced about 12 weeks ago. I had a similar situation to you: bicuspid valve with slow growth of the ascending aorta with any potential surgery way off into the future. I went for my regular check October last year and found mine had grown 5mm in a single year and hence pushed through the 50mm threshold to operate. I put a post on here recently that covered all elements of my surgery.
You are facing a very daunting time but do not fear. A lot of that fear is dealing with the unknown and that is where this forum comes in. There are a lot of people like myself who have been through open heart surgery and can talk you through whatever you need to know. There is incredible support on this forum; everyone will be rooting for you and will provide whatever information you need.
I had surgery and was working after 4 weeks, back in the office in London after 6 and back out running after 8 weeks.
I would suggest you follow their advice and take it easy on anything that will put pressure on your circulatory system although I was told I could continue with aerobic exercise such as running, cycling, swimming etc.
Please try not to worry. You’re in the best hands now. You’ve got this.
Hi, I had pretty much the same, had an avr 7 years ago, (I was 45), with ascending aorta repair at the same time, I was in hospital, just over a week, off work for 6-8 weeks ( self employed, working with hubby, lots of heavy lifting) then back to work, but only doing the easy bits X
Take it easy, follow any advice given by your team, make sure you look after your dental health as well X
My husband has a biscupsid valve just like you. He has been monitored for years and the aneurism on his aorta slowly over 20+ years grew to the size of 5.6cm. We did not really understand what this meant but in January this year was told he would need a replacement ascending aorta and maybe a valve.
We were shocked and very scared. He had the operation in April this year which ended up been a replacement ascending aorta and valve and root sparing surgery. It was open heart surgery.
By sparing the valve it means he doesn’t have to take Warfarin and just an Asprin every day. They can’t determine 💯 if they can save the valve until they actually open you up.
If you need a new valve you have to decide if you want an animal or mechanical valve so it might be worth thinking about this in the years to come.
As for heavy shopping and things my husband wasn’t allowed to lift weights in the gym etc but was allowed to live a normal life and it don’t think carrying shopping etc was a factor that contributed to the aneurysm.
I don’t know about stress but I assume it is more about you blood pressure and keeping that stable, so keep an eye on that, he was regularly monitored and ended up on medication for this, It really is a good idea to get healthy and if you a over weight do something about it as he was told this could affect his recovery.
We are now in August, he was in hospital 10 days but I can honestly say it has changed his life. He is so much fitter than ever before. He can go to the gym and is allowed to lift weights, we are on holiday and have been walking 20,000 steps a day, which he couldn’t do before and he has
Lost 2.5 stone in weight.
They will continue to monitor him now for the rest of his life, they have said he may need another operation in the distant future which will then need the entire ascending aorta, root and valve replacement as one piece but they can’t say for definite if and when. He is 39 now and this operation has been very positive for him.
I had Open Heart Surgery for an Ascending Aortic Aneurysm the 4th April this year. Mine was valve sparing. I was first diagnosed at 4.9 in April 2017 when I was 49. Was still at 4.9 when I was operated on. It was felt I would have a better chance of recovery operating when I was younger (51). Stayed in hospital a month as they had to operate again and I took a couple of infections.
Was back in my local hospital a few weeks later with Pneumonia. But I'm doing really well now. Doing Cardio Rehab, walking a lot and back playing golf.
Prior to the op I never had a single symptom but was told to avoid heavy lifting but otherwise to continue as normal which I did, I can't remember if stress or stressful situations were mentioned while I was getting monitored. I was never asked what kind of valve I would want but they did say the night before it may need replaced if things didn't go to plan.
Had my follow up 2 weeks ago, heart rate and blood pressure are now spot on. Still off my work (Police Officer) but the surgeon didn't seem to have any concerns about me going back to full work. Was on light duties prior to the op.
There is not a lot of information out there about the condition other that what I got from my consultant, surgeon and the team that dealt with me. Couldn't even find anything on the NHS website.
Thank you everyone for replies, helps to know my age for this isn't unusual. My blood pressure is never high so I guess that means the stress wasn't a factor.
Just to add, I'm female. And I've never had any advice on diet or exercise. Just been told it's fine, wont be a problem for a long time. Even now I've been told it's worse, I couldn't get any information about what might be making it better or worse, just told me the news, told me I'd get a CT within a couple of months and shuffled me out the door. I definitely dont have a team or anyone I can contact for advice. It's the shock with no information that's got me. I have emailed a nurse on BHF website so hopefully they can help.
Hi Daunted. Wow. Scary for you. I had ditto and had an AVR and ascending aneurysm repair last Dec at age 50. In my case it was the stenosis rather than the aneurysm that prompted the eventual move to surgery. I was monitored for many years (eventually every six months) and these things can stay stable, suddenly worsen and then go back to being stable. But everyone of course is different. The important thing is you are being checked regularly and are on their radar. You still have to live your life and it is a constant worry. I was told "don't lift anything too heavy". But was never really told what that meant! I took it to mean anything where I would really need to strain (for eg I imagine helping someone take a washing macine up a flight of stairs probably won't be advisable). But a bag of shopping? Probably ok. The main thing is to listen to their advice (however vague) and try to use common sense without at the same time limiting yourself. A burst aneurysm is terrifying, but thankfully rare. As I say the fact you're being monitored should go a long way towards avoiding that scenario. Though of course you're scared and worried. Stress can put a general strain on the heart and BP especially if accompanied by poor diet or excessive drinking - so good generally to try and limit it if you can for all sorts of reasons - but my understanding (though of course I'm not a doctor) is it's more the physical stuff that's the issue. But good luck and hope all goes well for you. Keep asking the questions as it's what we're here for!
You are very definitely not alone - this forum is full of helpful, understanding folk.
I'm very similar boat - BAV, c.50mm aortic aneurysm. I've been having ECG over last 5 years, with two CT's thrown in. My cardio described heavy lifting as carrying two 20kg suitcases up stairs.
The CT is likey to be so more accurate measurement of arteries can be made rather than because surgery imminent.
It was big shock to me to be referred to surgeon 12 months ago as I'm pretty much asymptomatic and had assumed that suffering breathlessness/chest pains would been sign that op was needed - which might be the case if just BAV. As Nic says, aneurysm can be stable for some time and no-one seems to be certain what causes growth - advice is largely healthy lifestyle focussed.
It seems logical that BP is linked...
I'm now reconciled to needing OHS fairly soon (12 maths or so) - but if BAV stenosis and aneurysm size don't change then it might never happen.
Hi, Daunted, sorry I'm late to this thread, I try to keep an eye out for aortic problems, having had a dissection myself.
What you've been told is true, that particularly with a rapidly-growing aneurysm, it's important to monitor it closely and intervene in time, if that does become necessary. Clearly any surgery has a risk so the equation is to balance the risk of operating vs. that of not operating and having it dissect. Since the operating techniques jave improved a lot in the last few years, the "old" intervention diameter of 5.5 cm is being re-examined. Also, in women, some of the international guidelines suggest a lower figure for women, as the starting aortic size is smaller than for men. Certain genes predispose to aortic disease and it's slowly being recognised that having certain genes also reduce the intervention diameter guideline. BAV is an indicator too, though the % of BAVs that actually end up with an emergency problem is relatively small.
It's an unfortunate thing to have to contemplate, but rest assured you will be well looked after, and that a planned operation is infinitely better than needing an emergency one.
Yes, you do need to limit activity, particularly of any isometric kind, or anything that raises blood pressure; gentle aeorbic exercise is however helpful.
If you check my profile you'll see the AD Awareness site, mainly aimed at people who have actually dissected but there are plenty of members in the same boat as you, trying to prevent an emergency, and of course there's now a lot of work being done on prevention.
I hope this is not overly concerning but since I dissected even though being monitored for an enlarged aorta I feel strongly that everyone should be aware, should educate themselves, and do everything they can to avoid the nasty thing I suffered
Get back if you have any other questions. Good luck
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