New to all of this. I am 45 years of age obsessed with pushing myself to the absolute limit in the gym both cardio and weights. Recently diagnosed with aortic aneurysm and discovered my aortic valve is calcified and bicuspid. I am measuring just over 4 cm and consultants dont seem all that concerned other than the fact I am dicing with death every time I pick up a heavy barbell. I am a single parent to 2 young girls and burying my head in the sand. Wondering what the future holds and if anyone in a similar situation.
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Dragon1973
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Perhaps for your daughters sake it's time to rethink the exercise routine. It is your life and your choice but think of impact on them if the worst should happen.
Thanks but I was on anti depressants before diagnosis which wasn't helping the speed of my heart rate. I have stopped taking them and exercise is my only escape. Unfortunately I am an extremist.
After my heart attack I was found to have a bicuspid valve and an aneurysm of 4.9 cm. COnsultants unbothered and will only operate at 5.5 cm (it used to be 5 cm). Many people live out a natural life span with both bicuspid and an aneurysm. The danger is with heavy lifting and straining there is a risk of spontaneous aortic dissection (SCAD) which your post suggests is your big concern. Your life, your body and your choice. You should be aware that supplements will seriously adversely affect you, particularly if they are steroid based. You need to get your blood pressure sorted (I expect you have been given all this advice already) and ensure your diet is sensible. At the moment you are probably so shocked you can't think straight - what happened that resulted in finding out you had a bicuspid valve? Don;t underestimate how finding out you have a problem undermines rational thought. If your concern is leaving your children then I agree with Bantam think of them first. Take care - there is certainly an adjustment to be made when you are told you are in a club no one wants to be in but you learn acceptance and adapt your life accordingly. Give yourself time.
Had a very high heart rate even though in gym every day. Scan showed aneurysm but due to high heart rate it was blurry. Had ECG which showed bicuspid. On bisopralol to reduce pressure even though it is already low. I have stopped the straining and lifting weights that are too heavy.
Brilliant, you;re off to a good start by reducing the straining and lifting. It;s hard to give up something that you enjoy and is an escape from daily life. It;s also part of your routine and leaves a gap when you stop doing it. You might like to consider another sport or activity: running, cycling, or a martial art to focus on...... The Bisop is a beta blocker that slows your heart rate and lowers the pressure.
Hello, it’s always a shock when you get a diagnosis that affects your way of life and it can end very difficult to come to terms with it. But there is help out there to do just that. I don’t have specific answers but hopefully some helpful thoughts. Have you spoken to your GP for some counselling? Or to the BHF nurses for some tips about gradual adjustments and emotional support? Some employers have an Assistance Programme which provides some free confidential counselling. If you qualify for cardiac rehab perhaps they could help you modify your exercise regime? Or are there any personal trainers out there who specialise in cardiac cases and understand your needs or obsession as you call it?
All the best for the future, for you and your daughters.
Not quite the same, a heart rate monitor straps on your chest and can be used to set a warning limit at which point it goes off and starts beeping. It is like the slave who walked along behind the Roman Emporer saying "remember you too are mortal". There are quite a few studies out there that indicate that all you need is about an hour of brisk waling. Think hard about your daughters -- aneurysms can kill you stone dead before you hit the floor
Dragon1973 Hidden Sorry I am a bit late to the party but I have just been diagnosed with a Bicuspid Aortic Valve too, am 36 and also love exercise. I had planned to run/walk an ultra this year as well as an Olympic distance Triathlon - do you have any tips / research into what are 'safe limits' in terms of heart rate or is this something that is individual to my situation that I need to discuss with the specialist? Thanks x
It was a bit surreal and couldn't have gone better. Thank you for taking the time to ask, means a lot. After almost not being allowed on the treadmill when having my tests (the 12 min stress test) and being told to rein it in / slow down / call 999 if i black out again, the specialist didn't seem concerned. In fact I felt a bit stupid! All my stats are good so he has signed me off to do the ultra and said I need to go back in 5 years for a check up. I am really relieved but also a little nervous that it is so far away as a lot can change in 5 years. I think it's really freaked me out having blacked out / feeling ill and tired all the time but maybe this wasn't the cause of it at all and I have to trust in his professional advice. How are you now? It's really scary to think that you might need to 're-define' yourself and stop / hold back on the thing you love. I hope that you have been given some answers and feel better having had some time? Also, slightly unrelated, but the apple watch has installed a feature called fall detection. It detects when you have had a hard fall and has the option to contact the emergency services, I got this as a safety net and although the sporting functionality isn't as good as my garmin, it is still a pretty decent alternative and gives me some comfort when I am out walking / running / cycling on my own. x support.apple.com/en-us/HT2...
Saw my specialist. He is very unconcerned about valve. Looking at 10 years before surgery so it is just looking after it best I can till then. He also said that they would pick up signs of deterioration via scans before I noticed symptoms so fingers crossed your blackouts were unrelated.
I think you're right to be concerned though not overly so, but I also agree with others that I think you could modulate your exercise regime, particularly moving from strength to cardio - you should still get the same rush if you choose what works for you. But you're dead right - burying your head in the sand won't yield a great result. I speak from experience.
BAV is one thing, which can be an isolated matter. BAV plus an enlarging aorta is another; your 4 cm is a little on the large size statisitically, though of course it may be normal for you.
My story is I had an aortic dissection in 2017 at the age of 63, having been monitored for an enlarged aorta since the age of 41. I did not have a bicuspid valve nor any other indication of particular aortic risk, but things are definitely not simply a case of "below x.x cm diameter you're safe". I dissected at an ascending diameter of 4.8 cm, though the dissection was further along where the diameter was more like 3.6 to 4.0 cm. My aorta had been size-monitored for 20 years, but I still dissected. I failed to take it seriously enough originally and am lucky to still be here. I didn't push weights but I used to do some serious hill walking and mountain biking.
Whilst your specialist may be unconcerned, the lesson I learned was: what is their speciality? If they are following the European or other "Guidelines" on aortic disease, then the guidelines themselves are of their nature behind the curve, and current research has moved on. If, however, your specialist is at the forefront of aortic medicine, then that's a different matter and they will know the latest practices.
For example, the original practice on when to operate (for an aneurysmal ascending aorta - not a BAV with no aortic enlargement) was to say that the risk of surgical intervention was high hence no-one would be operated on until the ascending aorta reached 5.5 cm, or 5 cm in Marfans. Things have moved on. Firstly, surgery is much safer nowadays so the "risk to operate" has reduced; it is also recognised that elective surgery is hugely safer than an emergency repair. Secondly IRAD in 2007 published a paper saying that nearly 60% of dissections occurred in people below the guideline 5.5 cm (this is 60% of actual dissections, not 60% of people who had aneurysms). Papers have since been published saying that the guideline diameter (5.5 cm) does need to be reduced - but that will take time to reach the Guidelines. There are known to be links between various genes (around 30 of them) and a corresponding maximum diameter before intervention, and this is an improvement and genetic tests may help. Why an aorta dissects is still not exactly known, so there is no absolute answer. But the "risk to not operate" has definitely increased just as the risk to operate has reduced. A simple "5.5 cm is safe" is not correct.
There is an association between BAV and dissection, both statistically and in the formation of a theory as to why - for which have a look at youtu.be/LryJkWt-Ffg with slides at
The theory is that the turbulent flow a BAV makes causes the wall of the aorta to become "scoured" over time which causes actual cellular changes which reduce its strength.
In terms of specifics you need to think about:
- be sure whether your specialist is looking at your case as an isolated BAV or as BAV + Aortic enlargement or Aortic Enlargement - as far as I can tell from above it's the last. If it were me I would want both monitored, especially as BAV can aggravate the aorta. You're young so the decision on replacing the valve only is tricky in itself.
** high blood pressure is a serious no-no with aortic enlargement. This is one of the things I didn't take seriously "enough" and was 140/90 for a long while (which NICE says is OK!!) then it crept to 150/100 and sometimes 160/105. I was about to get it seen at a blood pressure clinic when I dissected. So it is extremely important to control your blood pressure meticulously - 120/80 (NOT the NICE recommended value of 140/90) and be deadly serious about it. There may be a fair bit of experimentation to find the right balance for you.
** avoid things that will put your BP up transiently by a large amount - and pushing weights will do that. At this page: livingwithdissection.iradon... there is a table describing relative efforts for exercise. Just aboe that is a link which says "More information about activity after aortic dissection can be found here." That takes you to the original paper describign the work, and there is information there on the effect of weights on BP
You may like to know about Aortic Dissection Awareness UK & Ireland. We are the UK patient organisation and also work with the British Heart Foundation and others. Our web site (still early days) is at aorticdissectionawareness.org and our Facebook Buddies group is facebook.com/groups/6377674... or search FB for "Aortic Dissection UK Buddies" We deal with many members with aneurysms and who are looking to avoid dissection, and of course many dissected members who have some strong advice for those at "only" the aneurysm stage. These will include Abdominal (AAA) and thoracic (TAA). We also have many members and buddies with a Bicuspid Aortic Valve.
Hi Nikki, glad the info was of use. Do you know if you have any genetic changes? The top geneticist on aortic pathologies in the USA has said their standard screening now is to do genetic tests first THEN do imaging. They know that certain genes mean that the intervention diameter should be reduced to 5.0, 4.5 or 4.0 cm depending on which gene. Logic is: if you don't know if you have a genetic risk factor, how do you know which diameter is "safe"? You may have trouble getting tests in that order. I can give you the reference of the paper if needed.
Also, wear a med alert bracelet, so if the unexpected were to happen, the hospital would see, without fail (card in wallet/handbag is not enough). AD is too often diagnosed as a heart attack, as it was in my case, or acute gastritis.
Wow thank you so much for all your advice. I had read somewhere that your height also can factor into time for surgery based on surface area of skin. I am unfortunately just touching 5 feet.
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