Hi everyone,
For those who have had valve replacement surgery, at what point did the Cardiologist state that it was time to have the surgery? Also, I'm curious to see if anyone had the opportunity to choose when they had the valve replaced.
At 45, I don't want to wait until I'm really unwell to have the replacement and would rather have it done sooner so that I can enjoy life to the full with my youngest child without worrying about my condition.
Thanks.
No direct knowledge but two friends with. One had one valve replaced and two repaired at 70. At the time of surgery they were getting breathless with the slightest exertion. A year previously they had had no symptoms. Another friend was blue lighted with chest pains in early 2017 (within days of my first angina attack). The diagnosis was a faulty mitral valve. They are still monitoring it but he is seriously concerned about the ticking clock. He is 67.
I suspect the only way to accelerate things is to go privately. The only problem is OHS is from about £25,000!
Hi N1kk1B,
It depends on the severity of the stenosis. I was diagnosed with moderate aortic stenosis 5 years ago, and had an echocardiogram every six months following the diagnosis. From what I remember of the appointments with my cardiologist, he told me nothing would be done until it was severe.
In May of last year an echo test showed that the stenosis was severe, so my cardiologist then referred me to a surgeon.
Following appointments with the surgeon, and more tests, I had AVR and bypass grafts in January of this year.
Although I was experiencing some angina, I felt well before the operation!
Keith
I think it's a gradual thing. I live in a bungalow in Norfolk and it was only on holiday in Devon where I noticed that I felt stressed driving around the narrow lanes and my left arm felt heavy. I mentioned it to my doctor who arranged an ecg. After a hospital stay and angiogram they diagnosed aortic stenosis. I then had another test two months later that diagnosed a biscusbid aortic valve and severe stenosis. I saw a surgeon about four months later but whilst waiting for surgery started to feel very faint. Again mentioned it to my doctor and was sent up to A&E and admitted. Two weeks later I was transferred and had my AVR. Looking back I never felt really unwell, just a bit puffed when doing certain household chores. I put that down to aging.
Thank you everyone. It's good to know that none of you seemed to feel extremely unwell prior to having surgery, even with severe stenosis. That gives me a bit of comfort.
I think I need to allow myself time to process everything and then hopefully I'll be able to move on with my life without this constant wondering about the future.
Hi N1kk1B
I had my valves repaired at age 69 , open heart surgery, got the zipper, etc., but my fitness had steadily declined from about 55 onwards. Looking back I was very busy with my job, getting promoted, etc, and raising my 3 sons and didn't spend enough time getting my fitness right, lots of activity but not much continuous exercise.
I used to work into the evenings so a glass or two of wine was part of the territory. At that time I was about a stone overweight at about 14 stone instead of 13 stone - so outside my BMI. However I don't tolerate wheat very well so junk food was out and, as a result my arteries were clear.
I have just seen a recent report showing that people who maintain a good standard of Physical fitness on the whole do not suffer from heart problems. I am 74 and I now take far more exercise than I did when I was middle aged.
I wish I was 45 again. I would chuck the booze, go for a plant based diet with fish and a small amount of meat as a treat and completely lose sugar, in all its many forms. I would make time for 30 minutes of exercise 5 days a week. I would make sure my weight stayed comfortably at about half a stone inside my BMI. I would encourage my friends and family to get fitbits or something similar so we could indulge in a bit of friendly competition. I would tell myself that my heart is muscle, to use it or slowly lose it.
Enjoy your journey through life, but don't take it easy. Have fun and be active. Best wishes. Ian.
Thank you Ian, some good advice to take on board.
I was a Combat Medic in the Territorial Army for 13 years, and can you believe that my condition was never picked up!
I used to be very fit, but not so much at the minute as I do get breathless. I'll definitely be looking into some of your pointers though, thanks 😊
I'm 18 months down the line following Aortic Valve Replacement required to rectify stenosis of a pseudobicusped valve.
Symptoms of breathlessness and chest discomfort increased in severity over time as the valve stenosis gradually compromised the opening of the valve. The symptoms were exercise induced and subsided on resting so stable Angina, I guess.
Regular Echocardiograms tracked the pressures, flow rate and cross - sectional area of the valve opening which changes over time.
This monitors the transition from mild through moderate to severe, at which point surgery will be necessary to avoid a potentially fatal 'event'.
I believe there's a set of three measurements from the Echo' which when reached, mean surgery.
My heart had by now become slightly enlarged from the effort of pumping against a diminishing valve opening. Symptom severity is also a consideration in your cardiology team assessment and decision to operate.
I was a relatively fit 65 year old, able to still play tennis a few days before Open Heart Surgery which I believe contributed to to an uncomplicated surgery, short hospital stay and relatively quick return to activity.
I was lucky not to become or feel extremely unwell, but nevertheless, it's a scary and stressful journey for you and those around you.
However, on the plus side, surgery can gift you near normal life expectancy, all other things being equal.
There comes a point where surgery is less risky than just medicating a failing valve.
Good luck on your journey.
Hi N1kk1B. In 2002 simply by chance I had a complete health check, (I live in France and this was a normal procedure here, carried out by the Social Security Service).
Everything was normal, except they picked up something not quite right with my heart. I was referred to a local cardiologist for further checks. He discovered that there was some deficiency with a heart valve, (possible leakage), and I should be aware of it and come back in 6 months. This I did although to me things seemed normal. I underwent further tests at the end of which I was told that I definitely have a leaky Mitral valve and should be admitted to hospital for further observation s.a.p.
He immediately telephoned the Heart hospital in Bordeaux and I had an appointment for the following week. At this point I was unaware of any problem, (I guess that we simply adjust to any change in our daily functioning.
I was put through a number of tests, including a camera being inserted into a vein and passed through to my heart, all this I saw on a screen in front of me.
Anyway the outcome was that the diagnosis was confirmed and I went into surgery almost immediately.
In fact it was discovered that my aortic valve was in need of replacement as well as the mitral. So I had 2 valves replaced for the price of one.
My advice to you is to insist on further tests to verify the problem. If there is a leaky valve then the heart has to work harder to compensate which could be detrimental. So early intervention is not a bad thing. As for age, I was 65 when I had the operation.
Best of luck
Wow, such an amazing response from the French health provider.
I've been told that my heart is working too hard, which is why my pulse rate is so high.
My main concern whilst playing the waiting game, is the possible damage that it may cause to my heart overall.
Our NHS are so stretched and operations are being put off and cancelled daily, even the most serious.
I also lost my mother 2 years ago to organ failure as they didn't refer her soon enough for a transplant assessment. She died 2 weeks before the appointment. Such a worry.
Yes. As I said your heart is having to work too hard to counteract the leaky valve.
I do understand that the NHS is in crisis, but you must pressurise your specialist for an early intervention. It's your life after all- not there's!
Sorry to hear about your Mum.
Good luck.
The good news is that there is an election coming up. Go see your MP. I think as an ex service woman you are allegedly up for preferential treatment, it might be worth a try. Mind you they will promise you anything., But it could be fun trying.
As pow77 said you get great treatment in France . You also get good treatment in Spain as long as you don't go to the tourist hot spots. UK used to be in the top 10 world health organisation ratings. We are now 23 rd and sliding slowly downhill. I think the USA is 32nd. Spain is 7th. Not sure about France.
Far be it from me to suggest you take your e111 and stagger through the door of a EU hospital complaining of chest pains. (Preferably near a Eurostar terminal). It's all part of life's rich pattern.
Hi N1kk1B. I had an AVR last December at age 50. My cardiologist made the call when I did an exercise test and my blood pressure didn't go up. But I'd been on six monthly checks at that point so the direction of travel was pretty clear, even if it was still a shock at the time. I didn't feel at the time I had much in the way of symptoms, though post-op the difference was a revelation. I'd assumed for my age I'd have no choice but to have a mechanical valve and so was pleasantly surprised when I was given a choice, and went for the next gen tissue Edwards Inspiris. My three girls are now two adults and one nearly and so I very much sympathise with your dilemma, but never felt personally having this hanging over me (I'd been on the NHS books since childhood) limited what I was able to do with them as a parent. But then I guess everyone's symptoms/progression will be different.
Hope that helps at least a bit, good luck and any further questions feel free to ask away!
Nic x
Hi Nic,
Thanks for your response.
It may just be me being over cautious, but I feel like I can't go on rides at a theme park when we all go out as a family, partaking in the fun. I normally hold everyone's bags and coats 😄 I also find that my breathlessness limits me in certain activities. I should be able to run around a park playing football without getting out of breath at my age.
Sometimes just whilst sitting on the sofa watching TV, my heart starts to race and I become breathless.
Maybe I'm feeling sorry for myself and may just be worrying too much, but I do feel that this condition is having an impact on my life unfortunately x
Hi N1kk1B. I know what you mean! It can feel self-limiting. I was quite lucky in that I didn't feel I really had any symptoms until about six months before the actual op, and that could have been psychosomatic. But after it I realised how I probably had unwittingly been limiting, self-censoring myself. Also the whole emotional build-up/terror of the run-up was in retrospect almost worse than the op itself; the psychological side of CHD is massive. It may be worth speaking to your cardiologist to try and get some clarity about what you can and can't do and your concerns about your breathlessness, especially when you're just sitting? But there are no easy answers. All I do know is my cardiologist (as I think most do) erred on the side of caution and as soon as she deemed it right put me on the list for surgery. It may have been an emotional rollercoaster but at least I knew they were keeping me under close monitoring, which was reassuring.
So do you mind me asking, are you at the point yet where they're talking about surgery or just in the limbo no-mans-land state (like me for about 30 years!)?
But hope things start to improve. It does your head in this heart stuff doesn't it! Nic x
Hi Nic,
Thanks for your reply.
They haven't mentioned surgery as yet, but my aneurysm has grown since I was last seen a year ago. I'm due an echo to see how my valve is holding up and have an appointment on 6th December with my Cardiologist, so hopefully I'll have more answers about my condition then.
It's been such an emotional rollercoaster for all involved, as I'm sure it has for anyone with heart disease x
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