hello there.
So my Dad had a Aordic Valve replacement done in May this year. This was a birth defect and was undetected until now, after collasping and having emergency surgery he is now fixed up and doing well. So my question/questions are.
Is this a condition I need to get checked out for myself?
Would I need to make sure my children are looked at?
And last but not least. How is everybody?
Thanks in advance
good to hear your dad is doing well. Maybe your dad could ask his GP/cardiologist as they will know his health issues in detail and be able to advise? Just a thought didn’t want to read and run, as must have been a worrying time for you, it’s hard to see a parent in ill health.
thank you very much. And yeah was a very stressful time for me and my family. I figured I could just basically ask my GP about it all and see what they say. Heart conditions run in the family from both my mothers and fathers side. So ideally best to get myself checked really. I just seem to panic and over think the outcomes and not to mention dont speak to anybody about them. Hence me coming on here to try and get some guidance from others
Thank you for replying
guess it’s a question of is knowing going to give you peace of mind either way - so you can prepare yourself / inform yourself or be relieved (hope it’s this one) (and get on with life either way) rather than always wondering which will bring some degree of anxiety. And we all know anxiety and stress are evil when comes to heart issues!!!! I have a congenital heart defect which was identified at 52 earlier this year (technically 51!). Wish you well, personally I’d rather know because they are still figuring out if the Defect is the cause of my angina or not to determine if need surgery - I just want to know either way because then I can get on, feel in limbo at present.
this the first time i have actually spoken out about my worries regarding all this and i feel slightly better on the situation so i think i will sleep on my thoughts and might possibly ring my doctors in the morning and get my answers. I do hope you have your answers soon and get out of Limbo its not easy for anybody being in there at all. Hope all is well and thank you for taking the time to speak with me
no problem and good luck!
I had a birth defect , a bicuspid aortic valve,that did not trouble me until I was 72 years old. Then I had a replacement valve. I would not wish to be told of the defect until it became a necessity. I got about six months warning, when I became exhausted, and that was ideal.
Sooty
Fair enough. So basically its either I want to find out now or i just wait to see if it happens to me.
Thank you for sharing
Hi, I was 35 when it was picked up that I had a heart murmer. It was about a year later that I had surgery to repair my prolapsing bicuspid aortic value. I had the David 1 procedure because of my age. The cardiologist suggested to me that immediate family should have scans to check as it was a congenital defect. My parents and siblings all had checkups (all clear) and my children will need to in the future too, when they get to about 16 years ago. My surgery was over two years ago now and everything has been good and recovery went well too.
I'm glad your Dad is OK and recovering well.
I guess the saying of foretold is forewarned, at least you would know either way and it would not play on your mind not knowing.
i had a genetic problem, my aorta was dilated and in the sweet spot for doing something about it i.e. a replacement valve.
If it had not been found it could have ruptured and in the surgeons words "if it happened in front of me, i may not be able to save you, you have about 3 to 5 years before this happens" he also advised to inform all blood relatives about it so they can get checked out.
So if you know you have a problem then it can be looked after. If you dont ..... well thats your gamble.
I had a bicuspid valve. So did my brother and sister. All 'discovered' in our early 60s (actually one after the other). Neither parent had it, to the best of anyone's knowledge. My son's GP decided to get him tested and echo showed negative. My other son is not at all interested in getting checked out. Younger son says he is not interested as result may impact insurance - which is a major issue. So there you have it. In my family, at least, where CAD runs through the paternal male line, just my generation appears to have developed bicuspid valve. My mum died at the ripe old age of 86 of something totally different. Its a tough call for you and your family. Personally I would rather not have lived with the monitoring involved and lived a full life until my early 60s. And then there is the whole insurance issue to consider.
Glad to read that your dad is doing well.
I too had a bicuspid valve, which was replaced when I was 49. Mine was spotted much earlier than normal as I was suffering angina while cycling.
The doctor did recommend getting my children and brothers looked at and the NHS had no problem with this. All done is reasonable time and all ok.
Speak to your GP, depending on the issue, they may be receptive.
Good luck and glad to hear your dad is on the mend.
Hi, I had a bicuspid aortic valve which was discovered at the age of 49 after overdoing it at the local Parkrun and suffering a cardiac arrest.
The valve had furred up a bit over time so was becoming less effective. I was told that depending on life style it is possible to go through life being unaware of these things. I'd had a few minor signs but the GP hadn't joined the dots yet.
3 years later and all good still doing PBs at Parkrun, fittest I've been in years.
Andy
Hi,
I have the same, currently waiting for surgery to replace my valve. I am glad to hear that your Dad is recovering well.
I have known about mine all of my life (my Dad had the same) as it was picked up when I was little andI have been monitored throughout my life. Both of my children were screened a few years ago following a referral from my Cardiac Consultant. Thankfully they were clear.
As hard as it is, try not to worry. Mine hasn't caused me any issues over the years and, despite me having surgery soon, I am still well. So, if in the event you discover you have the same, you will be monitored which will give you peace of mind.
I wish you all the best x
Hi I have a bicuspid heart valve (am 61) it was discovered by chance at 57 and am being monitored and am borderline for a valve replacement now. Bicuspid valves are congenital and I understand that about1-2 per cent of population with one. I understand that the prevalence in close family members is higher but most still won’t have one too. . my cardiologist advised that my children and brothers and sister should be checked out. My sister has been tested negative (great news) and my adult children are thinking about it. I am completely asymptomatic but have a dilated aortic root which can develop in some people over time as a consequence of the valve not shutting properly. The valve needs to be replaced when the root reaches a certain size. The problem is if you have no symptoms you don’t know when. The advantage of being tested is you can the be monitored as you can have it sorted early enough You just have echos from time to time it may impact on your travel insurance but it will give you peace of mind.
Best wishes to your dad
Hi my bicusped valve was only found in 2018. Had lots of tests done. Mine is hereditary, so my children and siblings have to be tested. Now if my children have it, then the Grandchildren have to be tested too. But i only had the cardiologist speak to me over the phone after having a second echocardiogram done. So he sent letters out to me to pass to everyone in my immediate family. Worth asking your gp though.
Regards Dee.
In answer to your question, I would suggest if it was a bicuspid aortic valve from child birth that you should request an echocardiogram via your GP.
I had this condition and due to the aneurism caused in my ascending aorta, they sent me off for genetic testing to establish if I had something called Marian’s syndrome. The testing of my aorta removed during my operation could not definitely rule this out, but genetic testing did. Despite being ruled out, they told me that bicuspid valves are a risk to direct descendants. My son was provided with a letter to take to his GP for an echocardiogram.
I would definitely ask your GP but I’m afraid it will probably be pot luck as to what they do dependant on their knowledge. It may be better if your Dad contacted his surgical team and asked their view / recommendation.
Kind regards,
Andy
I too had a congenital issue that was only picked up earlier this year (aged 50), resulting in a new Aortic Valve. It was only detected when I went to the GP because I suddenly became rubbish at running. Otherwise largely asymptomatic but post-op I was told I was maybe only days away from a catastrophic problem. The GP detected a murmur and the appointments escalated from there. But I was told it was highly unlikely to be genetic so my siblings wouldn't need checking out - only if they detect a change in health or fitness such as breathing, tiredness, palpitations etc. That would be my advice to you too.
Good Evening, Good to see that your Dad is doing well.
As for yourself, I've always been of the opinion that its better to know than it being left up in the air. I come from a background where something like five on my Mothers side of the family all had valve surgery. I'm congenital myself, Biscupid valve was first diagnosed when I was very young.
The reason I believe its better to know is down to one of my best mates, similarly to your Dad, he collapsed due to a valve failing, but, but unfortunately in his case he didn't survive.
He was in his 20's at the time, unsuspecting of heart problems. I had been off the radar for some years, but, following his death, I was placed back under review, and within a few years I had my first AVR at 33. My eldest son was 2 years old when I had the surgery, so we had him checked. Likewise my second son was also checked later on, and both were found to be clear.
They grew up knowing my circumstances, it was part of their life, and I honestly can't understate how important it was for us a family yo know one way or another. Being 'clear' means that they don't have to worry about themselves.
I've had surgery on a further two occasions now, and going reasonably well, but, one thing that always sticks with me, is 'what if' my mate had known and he'd been under care for his problem, would he still be here now.
If you get checked and it turns out you have a potential problem, you deal with it, you prepare, it doesn't have to change your life. If on the other hand, you're fine, no harm done.
It's a no brainer for me.
Best Wishes
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