Just over three years ago I was diagnosed with a bicuspid aortic valve with stenosis in the mild to severe range and very slight regurgitation.
I have been on 1.25mg Bisoprolol to reduce my blood pressure and to ease heart palpitations, and overall everything has been good. I have tried to exercise by doing Parkrun but it seems to leave me feeling poorly afterwards, when all my life I have been very active. So the only real exercise I get now is making myself walk to and from work everyday (2.5 Miles each way) and going for walks at the weekends.
I am aware that I am going to deteriorate over time, I feel that I have already marginally. I am also aware that I could potentially have many years left before any action needs to be taken and I have taken comfort in peoples words on here on how they just get on with life.
My question is to people who may have had a valve replacement/aortic stenosis. How did you get before your operation? How did you feel/symptoms and how did it affect you? Was it through a regular screening that they decided to operate or was it something else?
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bemore0712
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Unlike you I had no idea I had aortic stenosis till early this year. I had a dreadful cough and cold that just wouldn’t go away. I had been diagnosed with a slight heart murmur back in 2012 but I’d been told not worry about it. Then in 2016 I was given an echocardiogram as a precaution before surgery to fix a badly broken arm. I was never given the results of this so I assumed all was well and I was fit for the ‘arm repair’ which was my main concern at the time.
So back to this year! A visit to my GP In January to sort out the cough and the cold confirmed I had very high blood pressure so was put on amlodipine straight away. This was quickly followed up by an appointment with a cardiologist, examination and tests revealed I had severe aortic stenosis. I’d had pain in my chest when I ran to catch the train or bus and I would occasionally get a bit short of breath I put these symptoms down to not being very fit and sort of accepted them as the norm so it was a bit of a shock to hear the cardiologists diagnosis.
I hated taking the blood pressure tablets- it took ages for me to get used to them and the odd side effect. However, as the months passed by I started to tire more easily. My walking slowed down to snail pace and the month before my surgery well, I just felt like a battery running down, but of course just knowing surgery is looming ahead can wear you out with anxiety! I had aortic valve replacement on the 20th of August and after about 6 or 7 weeks I felt great. I could walk on the flat at pace without any shortness of breath ( inclines are more testing even now at 10 weeks) I actually feel I want to do more!
I’m now taking bisoprolol 1.25 and aspirin everyday. I stopped taking all pain relief yesterday!
Hi Cottagegardener. Just to say good to hear your update, glad the op went well and that you're out the other side! Hope things continue to improve for you. Well done!
I had a bicuspid of the aortic valve and was made aware of it when I went for a routine check up and was told that I had a heart murmur. Between then and the operation was around 15 years. I had an Echocardiogram regularly, normally every year, until I became more unwell when it was done roughly every 6 months.
I have other health issues and these began to worsen when the valve deteriorated. At that point it was decided that I needed to have the valve replaced.
Over that period prior to the operation I began to feel more tired, found any exercise increasingly difficult and generally felt both mentally and physically run down.
Since my operation I have spoken to several fellow "veterans" of valve surgery and should stress that everyone's experience can differ.
Try and enjoy your life as much as you can and do all the things that you get pleasure from.
Heart valve surgery is now a routine procedure so try not to worry too much - I know that is easier said than done.
I have aortic stenosis caused by a bicuspid valve. It was picked up after a GP heard a murmur during a routine test. I did not feel unwell but I do suffer with anxiety which I think can cause symptoms of racing heart and breathlessness. I was monitored yearly for around 7 years and was give BP medication. At the most recent test I was told the stenosis had slipped into severe category. I did not feel any worse than I had 7 years ago although my doctors suggested I probably did.
After many tests and discussions I went ahead with valve replacement surgery in March. It was a hard decision as I was active and did not feel unwell but my doctors were certain it was the best way forward. It’s a hard decision anyway.
The operation was really not too bad and I was up and about in less than a week. 7 months on I am as active as I was before the op. I’d like to say I feel better than before but that wouldn’t be true. I feel the same. I still suffer anxiety - breathlessness etc- and it’s been a bit of a battle to not panic and assume my new valve is failing!😬.
It’s a scary thing but it really is a routine op these days. I think, despite my lack of symptoms before the op, what convinced me surgery was only way forward is that I couldn’t comfortably live with the potential idea of a ‘ticking time bomb’ inside of me plus the doctors said to leave it too long would cause further damage to my heart which would make surgery down the line more complex.
I hope this helps a bit. Feel free to ask any more questions
Hi, I had an AVR due to having endocarditis which damaged my valve. Before my op I got progressively worse. I had no energy and even small walks from my hospital bed to the shower, about 100 steps, tired me out! Post op almost a year I feel so much better, lots more energy, enjoy long walks with the dog etc. If it gets that bad that you need the operation there is light on the other side!
Hi, l also have an AVR due to sepsis and endocarditis. l am three years post op in Feb and although it took two years to be as back to normal as possible, l still fight cardiac depression a lot of the time, did you suffer from that? l also read that you are more likely to get sepsis and endocarditis again if you've already had it, l so hope that's rubbish because it plays on my mind a lot. On the up side l can walk miles, fly to holidays and travel a lot on the back of my Husbands motorbike, he was worried he might have to buy a sidecar for me, thankfully l escaped looking like Olive from "on the buses". Take care, Sue.
Hi, yes I was told that I was to be very wary of any infection as it can increase risk of endocarditis again!! Any signs of anything then straight to doctors for an antibiotic. I know what you mean about the depression it can take a hold if you let it. My life has changed dramatically since the op. I have very little social life now which gets me down occasionally. I had a mechanical valve which means warfarin for life, depressing! On the plus side I spend a lot more time with the family, I walk a lot more and eventually I'll get round to eating a little more healthy than I do but cant give up all my vices!
Hi thanks for your reply, l too am on warfarin for life but l don't find it depressing because l have learned to control my levels and l still have some glasses of wine whenever l feel like it. My mechanical heart valve ticks loudly sometimes which is bugging at night, and l have a pacemaker now. As for the infection risks l had a good tip from the Doctor in charge of infectious diseases at the hospital where l stayed for three months when they saved my life. He said whenever you get any form of cut or scratch anywhere on your body put TCP straight on it after you have washed it with anti bac soap. People don't use it enough because of the smell. He also told me to take my temperature every day as this is a sure sign of infection if its too high or too low. l am not obsessed with endocarditis but l am with sepsis because that led to endocarditis and changed my life. l agree with you about getting antibiotics but also insist on a blood test too and ask "could it be sepsis?" the only way to detect that killer is through a blood test because it mimics so many other things. Don't give up all your vices, have fun enjoying them, goodness knows we deserve it !!!
We do deserve it! The valve clicking is very annoying at first but I don't mind the click so much now it keeps reminding me I'm alive, be worse if you didn't hear it ! Lol.
Stevo, same here! I ended up in hospital in April with endocarditis and had a valve replacement in May after 6 weeks of IV antibiotics. Endocarditis is absolutely horrible, isn't it! I'd never felt so ill in my life, and the GPs took 7 weeks to refer me to hospital because they thought it was just a virus plus anxiety. It was the most painful, exhausting, terrifying time in my life.
I'm so glad to hear you're making such a great recovery
I was bad for about 6 weeks before going to hospital I had terrible night sweats, chills, fatigue muscle and joint ache but felt ok during the day so I just put it down to having a bad cold / bit of man flu!! I eventually went to the doctor about my night sweats and ended up in hospital a few days later with chest pains, this was to be my home for the next 3 month. I was really glad to get my operation at the end of it, I was wrecked by week 6. I couldn't shower or walk to end of ward or even sit down in chair for too long. Feeling great now but really am peeved off at times when I think about it and how unlucky I was to get this infection so young with no underlying health problems but hey to can't look back only forward so I know I have to accept what has happened, and I have, and to get myself fit and enjoy the rest of my life with my wife and kids.
Oh god, the night sweats! I would soak every bed in the house, end up on the settee and soak that too! GP said it must be the menopause and I was scared I'd be like that for years.
Yes, it's very difficult emotionally to go through this, and I admire your positive attitude, good for you!
Stevo, can I ask you, did the doctors accuse you of of injecting drugs, when they couldn't find a cause for your endocarditis? I'm asking because, in my case, before they found my bicuspid valve (which was the underlying cause) and while I was still practically at death's door, the hospital doctors interrogated me and tried to force me to admit to injecting drugs. I didn't mind them asking, I just politely said no, but they went on at me for about half an hour while I was crying and begging them to leave me alone. I asked them to examine me for injection marks but they refused, as though it didn't matter to them whether it was actually true, they just wanted me to 'admit' it anyway. It was almost as traumatising as the illness itself, and I'm going to make a complaint. I'm just wondering if it's happened to anyone else.
I was asked all the questions and that was one if them, I told the truth that I never did and they were happy with that. I think they should be able to tell between a person who takes drugs especially injecting themselves and someone who doesn't, they shouldn't interrogate anyone, that's awful. I had a wonderful team if doctors and nurses. They think I got the infection from gardening. I was removing a big hedge in my garden and was getting scrapes and cuts but thought nothing if it.
Thanks, Stevo, I'm glad they didn't subject you to the same approach! Wow, I didn't think of gardening - I'm always getting scrapes and cuts in the garden, it doesn't bother me and I prefer not to use gloves, but I'll use gloves from now on. It's scary to think about the increased risk of endocarditis with a replacement valve, plus I'm on warfarin so need to avoid bleeding!
Yes, even if I had been a drug user, the doctors' approach would have been out of order. The nurses were rubbish too, so rude, and I got a secondary infection in my picc line. I don't think I'm allowed to name the crap hospital here, but fortunately I was transferred to Oxford Heart Centre after 3 weeks and it was heaven by comparison
Hi bemore0712. I was diagnosed with a bicuspid valve as a child and then stenosis in my teens/twenties. Had regular checks ever since, gradually increasing in frequency, until at age 50 last December I had an AVR and aneurysm repair. In terms of symptoms I never really thought I had any until a few months before the op (breathelessness mostly but could also have psychosomatic at that point!). But after the op it was a revelation - sort of "so this is what it's like for everyone else?". My whole chest and heart function felt so much more open, even in the hospital. So clearly I had been symptomatic but put it down to being a relatively sedentary 40/50-something. It is hard to gauge these things, especially if the change is only very gradual.
They decided to operate after I did an exercise test where I thought I'd done quite well but actually my BP had barely gone up, which is apparently a very bad sign! Although I had known for years it would happen "one day" it was still a bit of a shock. And the mental/emotional build-up was almost the worst bit in my view.
But I'm very glad I went through it. I'm now feeling totally recovered, fitter (sort of) and have lost some weight.
Good luck whatever happens next. And feel free to ask questions of us; it's what we're here for!
Ditto most of the above. Heart murmer, randomly detected. Regular echocardiograms, until the cross-sectional of the reduced aortic valve opening reached 'severe' which means surgery. So bioprosthetic valve 18 months ago at 65. During the developing stenosis, angina symptoms became more prevalent on exercise which meant increasing breathlessness and chest discomfort when cycling/walking up gradients. I was fortunate enough to maintain a reasonable level of fitness prior to surgery and my operation was described by my surgeon as 'uneventful'.
By post-operative week 10 , I was doing the things I'd always done, only with a renewed level of fitness. Walking ,cycling and tennis, all without any discomfort or angina symptoms. How lucky am I?
Of course there's a surgical risk, some discomfort and the need for a disciplined commitment to cardio rehab. But a small price to pay for the restoration of near normal life expectancy, in the absence of any comorbidities.
Hi bemore0712, I was born with a bicuspid aortic valve, and I found out at the age of 44. I'd been admitted to hospital with endocarditis, a horrible illness that we're unfortunately more susceptible to when we have heart valve defects. It's rare, though, so don't be scared, but do go to the doc if you get severe flu-like symptoms, just to be on the safe side.
It turned out that my aortic valve had been regurgitating for a few years, making me exhausted, but this had been misdiagnosed as depression. I'd also had episodes of chest pain and breathlessness that were misdiagnosed as anxiety. So I was glad to be diagnosed with the bicuspid valve, as it explained a lot.
It was diagnosed through a TOE scan (when they put a.camera down your throat, under sedation) because they were assessing how much the endocarditis had damaged my valves.
The valve had been damaged, and had been failing even before I got endocarditis, so it needed replacing straight away. I'm actually glad they did the operation before I left hospital, so that I didn't have to live with the symptoms any longer. Before they did the op, while I was still in hospital, I was very breathless and had difficulty walking more than 100 metres, and it was hard to hold a conversation, as it caused chest pain and breathlessness if I talked for too long.
I now have an artificial aortic valve, and even though I'm only 5 months post-op my energy has returned and I feel better than I have for ages. My heart no longer races, so I don't suffer anxiety any more. In fact I don't think I have mental health problems in reality. I'm still on antidepressants and a mood stabilizer, but only because it's difficult withdrawing from those meds and I want to wait until I'm physically and mentally better after the trauma of being so ill and the surgery.
I opted for an artificial valve, they do tissue ones too from pigs, cows and human donors, but the tissue ones don't tend to last as long and often need replacing, and I didn't want to have another operation if it can be avoided. Artificial valves do mean you're on warfarin for life, as otherwise they can cause blood clots, and they make a ticking noise that you can hear if it's very quiet. That bothers some people, but in my case it's reassuring to hear my heart beating at a nice steady pace and no longer racing and regurgitating.
I discovered an organisation called the Somerville Foundation that helps people with congenital heart disease. They provide a lot of info, help and advice, free telephone counselling, and events so you can meet other people in the same boat. If you google it you'll find their website.
If I was in your position I'd try and push for surgery to replace the valve ASAP, although I understand it's difficult to speed the system up. Also perhaps ask them to clarify whether your stenosis is mild, moderate or severe, and tell them how badly it's affecting your quality of life (if you haven't done so already).
It's also a good idea to tell as many family members as possible, as congenital heart disease can be hereditary, and if you have children, ask the GP if they might need testing.
Let me know if you have any other questions or concerns, sending very best wishes, Cathy xx
Mine was mitral valve. It was diognosed 40 Years ago and then just filed away. 5weeks ago I saw g.p. With chest infection! Or so I thought. 3days later I was being operated on. I had no symptoms until then, walking, gym etc.
Hi thanks for sharing I had a valve replaced and a partial aorta replacement I suffered heart failure and due to this was diagnosed with cardiomyopathy. My life was changed after valve replacement and before I struggled to walk 100 yards.
I was treated for 2 years on meds and then advised that surgery was required.
It was a challenging time but my faith and of course the excellent NHS made everything better.
I'm now 2 years on and going from strength to strength.
Hi thanks for you message I can say the surgery and valve replacement made a huge difference. I could hardly walk up a hill and I'm now back doing what I love..
You will have regular screening. When you get your review they will expect you to tell them if you are finding it difficult to walk more than previous. Problems sleeping without being raised with pillows. Swelling in your ankles & feet. I found out in 2016 I had a bicuspid valve now I'm struggling to breathe walking short distance and climbing stairs. So it's took 8 years and I've been told my stenosis is moderate to severe now. I have annual echos and 6 monthly reviews with cardiology.
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