Aortic Murmur

[Kathryn1967]

Hi, just looking for support as I am 56 and thought I was fit and well until last week when the GP sent me to hospital due to murmur. I am now waiting for scan. Suspected calcification of the aortic valve. How and Why? I feel so upset and worried. I do have a history of high cholesterol and have obviously not managed it as well as I could have. I wish I could turn the clock back. Anyone else out there with similar story?

[Rhinos67]

Hi Kathryn1967I was diagnosed with severe aortic stenosis about 2 and a half years ago. I was absolutely shell-shocked and asked the same question, was it my fault. It wasn't, I had a congenital heart defect... a bicuspid valve that up until then at the age of 54 I'd been blissfully unaware of.

It was picked up when I was having symptoms... shortness of breath when exercising and lightheaded. I'd thought it was asthma, but thank goodness I listened to my body and got it checked.

If you don't have symptoms you may just be monitored, but it depends on the level of stenosis.

If you are on Facebook have a look for UK Aortic and Heart Defects Pre and Post surgery. Several hundred of us who have been there and are going through it. So much reassurance and support.

Joanne

😊

[Morges]

Yup. Pre-op assessment on Monday ECG showed AF. Op postponed, referred to cardiologist for echo. Advised to take anti coag and optional beta blocker which I declined. Not started the anti coags yet. I have no symptoms apart from an irregular pulse which I have known about for last 3 years with an ECG - again pre op ECG - showing LBBB. I am very fit, walk dogs 4 miles daily. My b/p monitor showed raised diastolic at 90. Systolic is ok. I was not happy!

[DWizza]

I thought I was fit and strong Kathryn , but kept feeling tired at the start of 2023. Noticed I was falling asleep at home in the afternoons after doing physical work around our small holding. I’d come in , sit down , write my weight training plan out for the evening session and fall asleep and not have the energy to train. Thought my testosterone might be dropping. After months of this I eventually got a GP appointment in June and they tested for thyroid , B12, testosterone etc .. all came back normal . July 13th I had Nstemi heart attack and on 25th july quadruple bypass surgery. Talk about shocked, frightened the wits out of my family and friends . They thought I was the last person to have heart attack. I consider myself extremely lucky and grateful for the rebirth. Not quite back to full recovery but I’m back to running 5k park runs with my daughter, yoga classes and working round the farm 👍🏻. Trying to tweak meds at the moment.

While in hospital the staff would ask “ Do you understand what’s happening?” I’d reply “ I know exactly what’s happening, I’ve had an Nstemi heart attack , the paramedics took my ECG and my heart was fine, I thought I had trapped wind, my first troponin reading was 74 , my second was 402. I had an angiogram , no stents possible , due for triple bypass at St Thomas’s… what I don’t understand is how it all happened !!!”

There’s no known cardiac history in my family, thought I had a pretty good diet and always physically fit. Consultants said it could just be a lifestyle thing , born in the 60s, decades of being unaware of the nutrition effects , periods of work stress (law enforcement for 40 years) , just a layering of things that would contribute to blocking my arteries. I’ve got one job to do now and that’s keep my new pipes clear ., no ultra processed foods , a Mediterranean type diet and occasional treats 👍🏻. Consistency over the last 6 months has helped me make a fantastic recovery so far , just a couple blips with tweaking meds . Accepting my situation has helped , I’m reminded everyday by the scars on my arm, legs and chest . Support from this forum is fantastic for keeping , part of my daily routine to read the updates and contribute where appropriate. Have you listened to the Ticker Tape podcasts? I recommend it , plenty of different stories of peoples experiences. You are not alone 👍🏻❤️❤️❤️

[JessicaRed]

Hi

I had aortic valve replacement surgery 10 wks ago, steadily recovering from both the physical effects of op and the mental effects of the shock of diagnosis and op within 3 months

please join the Facebook group Joanne recommended above, we are like a wonderful family on there and all been thru or waiting for the same thing so know how it feels ❤️🌈

[wodehouse123]

you are most definitely not on your own there are hundreds of us here in the U.K. a lot will have a similar story to you and I, where a heart problem that requires surgery at some point is diagnosed completely out of the blue. I am 64 now and 2 years on from initial diagnosis I am also 11 days post op following open heart surgery for replacement of aortic valve (mechanical valve) for severe aortic valve stenosis . All is good , pain relief managed well and looking forward to cardiac rehab. I won’t bore you with all the details now . Iwould just say join the Facebook groups , do your research , but only read the credible stuff published by BritishHeart Foundation , NHS, NICE or patient information from British hospitals , as this will tell you what is current snd available here in the U.K..

we are all here to hold your hand metaphorically through this .

Ask away and good luck

[Reuben52]

At 67, I was pretty fit, averaging 14k steps per day.

Having struggled with a “Christmas lurgi” that just wouldn’t go away, I ended up in the respiratory clinic. They were very thorough and managed to sort out my chest infection also picking up a “heart murmur” in the process.

Turns out I had severe aortic stenosis which came as a complete shock to me. No symptoms whatsoever.

AVR and double bypass on 26 February 2020 and with my dog as my only rehab through the pandemic, I managed a steady recovery and now am as fit as ever. Recent echocardiogram confirms this.

It’s a shock when you encounter that tunnel, but there is light at the end and it is often shorter than you fear.

Al the best.

[Petitlady]

I am ten years older than you, but this time last year was diagnosed with severe aortic valve stenosis. I have high cholesterol that I have been managing with statins but otherwise fit and well. not a great athlete but not overweight and active. My mum had heart problems and died in her early 70s but even so I was unprepared to learn I had a serious heart condition. I don’t have a bicuspid valve but the cardiologist was very clear with me. This happens to some people and it’s not necessarily anything we did. It’s how we were made. I had open heart surgery in June. It’s tough but not unbearable. Back home I got steadily stronger with help from some cardio rehab. By the end of August I could have a holiday in France,long walks although I needed an afternoon nap. Since then I have been to the Canaries and enjoyed a family Christmas. It’s difficult to accept .many of us have learned this the hard way, but you are not alone and we are lucky to live in an age when we can be given a second chance, even when we didn’t know we were going to need one!

[Yumz199725]

I am 26 and I have congenital heart disease bicuspid aortic valve with moderate to severe aortic regurgitation and moderate stenosis so will eventually need valve replacement surgery. Your definitely not alone x hope all your tests go well ❤️

[Zindolo]

I was also 56 when I learned that I had a calcified bicuspid aortic valve. I've always had the heart murmur, but nobody ever made a big deal out of it until then. So, this cardiologist puts me thru just about every test that there is, telling me each time that "Now we need to do THIS test and it will tell me everything I need to know, blah blah blah..." He did that 4 or 5 times, and once he was done billing my insurance for every possible thing he could think of, told me that I required OHS to replace my calcified aortic valve. At first I told him "NO", and frankly I wish I would have stuck to that. For one thing, one of the big factors was my calcium score, which was 504. Anything over 300 is considered high. I panicked, but after the surgery read that some people score as high as 2,000! I had that test re-taken on my own, and it was only down to 475 AFTER the valve got replaced. Both the cardiologist and the heart surgeon assured me that if I got the operation, I would feel 20 years younger and have SO much more energy. Well, that never happened. Since the operation, I've had virtually zero stamina. Another weird thing was that I had a post-op visit with the surgeon and when he was looking at the pre-op scan of my calcified valve, he mentioned that that was the first time he'd ever seen that image! One would think that he should have seen it before operating on me, unless, as I strongly suspect now, they are just operating on anybody who has insurance that will pay for it. (At that visit, he chatted with me about random stuff for maybe 10 minutes and then billed my insurance for $400!!!). The total bill came to about half a million dollars, btw! You don't mention what country you're in, but if it's the USA, there is LOTS of money to be made by doing these procedures on people, whether or not they need them. SO, I guess my advice would be to definitely get a second and third opinion, and find out just how severe your condition actually is before you agree to anything as radical as OHS. Good luck! One positive note, my heart murmur is mostly gone after the surgery, but I don't really care too much about that if I feel like I can't walk for more than a block without needing to sit down and rest for awhile.