Good morning. I am 63 years old and am 8 days post op. I was born with a bicuspid aortic valve instead of a tricuspid, but it was only discovered a couple of months ago.
My local hospital and GP said there was nothing wrong with me and that my breathlessness was caused by anxiety.
I decided to pay for a private consultation with a different cardiologist, all it took was him to listen with a stethoscope. He was shocked no one else had actually listened to my heart.
I wonder if anyone else had a similar experience?
I am doing well, and would love to hear how others are doing.
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BorderCollie2024
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hello , I had also a bicuspid valve replacement after diagnosis of stenosis. The operation was successful and was released from hospital after a week. Slept in a recliner for a few nights as it was more comfortable. Attended rehab classes until we moved house 3 years ago but now just do a UTube BHF excercise in living room which helps a lot. Good luck for recovery.
Oh wow, how brilliant! I know that mine is from a cow, but don't know where from. I'm going to ask at my 6 week check! Did you find that you got tired in the afternoons?
I am retired now aged 75 but generally I do get tired in the latter part of the day but am fairly overweight which doesn’t help. I remember it took weeks to lose the effect from the anaesthesia.
Have a read of my blog. I'm 9 months on now and doing fine. I have a prosthetic valve and am on low dose warfarin and aspirin. One day I'll write an update to include surgery and the recovery. I can now cycle 62k and swim 1000m+ shaunoconnell.com/2023/08/1...
Wow, your blog has blown my mind. I've just bought you a "coffee" on there! I was born in 61, heart murmur diagnosed when I was 11, due to my fainting all the time. However, it was never acknowledged again, I've had 2 babies, ran half marathons, worked as a nurse running around all the time, but was never quite as fit as I should have been ( considering all the training I put in) Started to get breathless over a year ago, GP referred me to local cardiac team who did 48 ECG ( then lost the results) plus angiography and promptly discharged me saying there was nothing wrong with my heart. ( not once did they use a stethoscope)
About 7 months later, I decided to get a private consultation with a cardiologist. A few questions and a stethoscope, diagnosed within minutes. ( best 200 quid ever spent)
He graciously took me on his NHS list, 8 weeks later, all done!
I used to work on Paediatrics years ago and used to have the babies in with aortic stenosis, I wonder how those little miracles are now?
I've sent your blog to my nearest and dearest, such a great article, very well written.
PS my careers teacher told I would be best to do something simple like hairdressing , I proved her wrong, my hair is still a mess but I got to the top with my nursing, then became a Director of Ethics & Compliance in a Global pharma company, so you never know, you might still become an astronaut!! Have a great day!!😀
Thank you for your kind comments on the blog, for sharing it and for the coffee 🙏
Wow. Your story of being investigated under cardiology but not having your heart listened to by anyone is appalling. I would raise it as a formal complaint or at least raise it as a significant incident via PALS at that hospital and your practice. There is a need for urgent learning at both it sounds. I would do this still, even if it was some time ago. You could have exerted yourself, with unknown critical stenosis and ... all for the sake of your murmur not being considered.
I don't think anyone should have a murmur without having an echocardiogram even if the murmur was picked up in a pre-echo age! Once that's done and it's normal, serious causes are ruled out and it can be regarded as a harmless flow murmur. There are electronic stethoscopes these days that any can use and that don't need a doctor to do it. It is also appalling that it wasn't picked up during your pregnancies. Examining the heart and being reasonably confident it's normal sounding is a basic part of antenatal care. Childbirth is extreme exertion! Extreme exertion with faulty hearts is very dangerous.
I too have done marathons and amateur stages of the Tour de France, and I guess we got away with it because the stenosis was not too bad at that point. That said, I had VO2 max testing at my local hospital, because I was friends with the anaesthetists who did it as part of pre-surgical work ups, and we were looking to see what change there was from training. On both occasions, (and this testing is exerting yourself to an exhaustion maximum) I had ECG changes indicative of a degree of cardiac ischaemia that meant the test was stopped a minute or so before I would have reached a peak performance anyway.
It's my understanding that a lot of people present to emergency services with an arrest having never had their bicuspid valve diagnosed. I believe the incidence is about 1% and it fulfils the criteria for screening as far as I can tell so I think there needs to be a lot of lobbying to get people screened, and certainly people who have a family history of sudden death.
I hope any siblings or children of yours have had their hearts listened to / had an echo.
Although I still get a little discomfort from the sternotomy wound, especially if have been more active than usual - DIY or gardening etc, I am assured that with time it settles down completely. I met someone who had had surgery three years ago and he gets no wound discomfort now which is good to hear.
Congrats on proving your careers teacher wrong. I'm cool with not being an astronaut. I guess that was a way of doctor in the late 60s reassuring my mother, my murmur wouldn't limit me much, and in truth it hasn't. I've had a year of taking it easy but am getting back to full activity.
I wish you an uneventful recovery, and thanks once again.
hi very interested about your doctor I was told asthma or COPD having aortic valve replacement on Friday how did yours go hope you are feeling a bit better get well soon ❤️🩹
I was told my breathlessness was anxiety or indeed asthma. I've been on inhalers for absolutely years, but my surgeon has told me that I probably never even had asthma, and that it was all to do with my heart. It's really strange finding out the real reason for so many things in my life . Do you mind me asking how old you are?
My husband started getting breathless in 2019 but nobody actually put a stethoscope to his chest until 2022, when they discovered mitral valve regurgitation. It is quite a surprise that they don’t think to do something so basic. He was told he needed a repair op in December 2023 but the hospital lost his notes on the system so he didn’t get on a waiting list until Feb 24. Still waiting for the surgery.
Hi yes I had similar issue to you pre-diagnosis I've been asmatic all my life, I'm 53, my asthma became uncontrolled last October . I had several appointments and changes in medication before being referred to respiratory consultant who diagnosed heart murmur and actioned the tests that showed my problems. I'm still waiting to see Cardiologist and have other tests.
This is cat mom doing pretty good I had mine about 3 weeks ago I'm just trying to figure out what you supposed to feel not full I get a little dizzy here and there and some days all my energy drains right out of me. I'm just scared to pieces I'm thinking about them all the time or I got anxiety really bad I know I talked to you before but it's nice to talk to somebody it just had it done recently I see how you're doing take care
I had similar surgery for a bicuspid valve and am doing well a year on. I hope you have complained to the practice for the doctors’ inadequate examination. It’s not excusable. It can result in sudden death. A complaint will change their practice if they learn. I’m a retired GP!
I'm ready to complain now! It's taken me a while to prepare! Plus the good news is that I am presenting today at PCR London, about the issues regarding women and valve disease diagnosis!
My husband has recently had mitral valve repair. He had symptoms of breathlessness in 2019 but didn’t seek help until 2021. He was sent for speech therapy and then referred on to just about every department in the hospital for 18months before the lung doctor put a stethoscope to his chest and immediately recognised mitral valve prolapse. It seems incredulous that the GP never thought to use the stethoscope, it would have saved a lot of time.
I hope you are continuing to recover well. Three weeks into recovery, my husband is still worn out and hoping the daily walks will help to build his stamina.
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