Aortic Valve Stenosis

[DenHump]

Hi Everyone, Im a newbie here, I had a coarctation of the Aorta repaired in 1984 and I also have what is very common with this condition is a bicuspid valve, at my last check up I was told my Aortic Stenosis is now moderate-to-severe and my Echocardiograms have now got to be done every 6 months instead of 12.....my question is can anyone who has had their valve replaced tell me roughly how long it would be from a moderate to severe diagnosis to the actual valve needing to be replaced? Im 55 years old have noticed that I'm slowing down a bit, getting a few headaches here and there, oh and also if I have alcohol, mainly a spirit it appears to raise my blood pressure and give me palpitations....is this common? Im keeping off the spirits and just have the odd glass of wine with soda! Any tips/hints would be gratefully received

[IanGordon]

My decline from moderate to severe stenosis of my pseudo bicusped aortic valve was over a period of 12 months.

I too experienced alcohol induced palpitations and some scary episodes of prolonged rapid heart rate (120÷ bpm). Subsequently I avoided any excesses. My exercise tolerance declined significantly with angina onset at an ever lower heart rate - I wore a hr monitor to observe this decline. I also found that exertion after eating eventually curtailed any form of exercise so any activity had to be on an empty stomach which was again limiting. I was almost relieved in January for my echo cardiogram to reveal that I had entered the 'severe ' zone and would be put forward for valve replacement surgery which happened uneventfully on the 24 April.

Post operatively you're left pretty much an invalid with zero energy and movement and things like showering totally exhausting. The pain was more discomfort and drug controlled and after about 2 weeks it began to become apparent that things would improve, albeit painfully slowly. Fast forward just over five weeks and today I've walked just over 6.5 miles with none of the old discomfort. I hope that gives you a snapshot of the likely journey ahead of you. Timescales will vary pre and post but I think my experience is fairly typical. I worked on the principle that if I go in fit then I come out well equipped for recovery. There's an element of luck insofar as I dodged all the risks so I wish you similar good fortune, going forward.

[DenHump in reply to IanGordon]

Thanks so much for your reply, its great to hear from someone who knows just what Im going through

[IanGordon in reply to DenHump]

Coincidently, my younger brother had his coarctation fixed some 30 years ago and although being monitored, so far his aortic valve is holding up. Additionally, you are a decade younger than me , so in principle, more resilient.

Do use this forum. You will find it both informative and supportive throughout your journey. You will soon appreciate you are not alone and that will help you enormously.

Good luck!

[starchild8862 in reply to IanGordon]

Hello Ian. Did your brother have a mechanical valve or a organic one?

[IanGordon in reply to starchild8862]

My brothers pseudo bicusped aortic valve has yet to go bad, so he is still running on the one he was born with. My replacement was organic - don't know if that means 'free range' or not! I believe it's American in origin, so probably not.

[DenHump in reply to IanGordon]

Hi Ian, My valve was doing well until 3 years ago and since then it has declined my peak flow ratio 3 years ago was 56 last year it was 73 and this April it was 80 do you know what yours was when they operated? Interesting what you said about exertion after eating as I have also found this ( when I was on a mini cruise recently, far too much eating was done..... I then tried to walk up some stairs and found it very difficult, it was also on the mini cruise that I got palpitations after cocktails....so kept off the cocktails as it wasn't worth feeling so peculiar. Cant keep off the cruises though!!

Denise

[IanGordon in reply to DenHump]

I haven't got the final data to hand although I do recall that the cross sectional area of he open valve was 0.9 cm2. Once you are <1.0 surgery is deemed necessary although your symptomatic condition is also taken into account. After my op my surgeon confirmed that the valve was in fact in a worse condition than the echocardiogram had indicated and seriously calcified.

[Delle in reply to IanGordon]

Wow Ian..that s inspirational, thank you for sharing.

[Fredders]

I was diagnosed with a heart murmur when I was 16 but didn’t have my first AVR until I was 52. That time I had a tissue valve. Afterwards I was checked every year for about 3 years but it developed regurgitation and they changed my testing to 6 months and the valve gradually got worse until I ended up having my second AVR last year, at 59. This time I’ve had a mechanical one, mainly because I had to have a splenectomy a couple of years ago and ny surgeon and I decided it wasn’t worth running the risk of another op because of the risk of infection.

There is no hard and fast time span in the time it takes for your valve to deteriorate enough to require surgery. In both of my cases they wanted to do the op before I started having too many symptoms as I should then recover quicker.

As someone else has said, there are a lot of us on here who have had heart surgery so between us we should be able to answer most questions both about the surgery and recovery - you are not alone 😺

Wendy

[DenHump]

Hi Wendy lovely to hear from you, I have read a few people who have had splenectomy, is this connected to the valve problem? I hope you are recovering well....it must have been awful going in for the second op as you know what to expect and how painful it would be, my cardiologist has recommended a tissue valve when the time comes but also said I may have to have it done 3 times as Im so young (!) I don't feel very young!!

[lifelover55]

Hi. I was diagnosed with mild aortic stenosis 2 years before it was found to be severely calcified. I thought something was not quite right - my running times got slower and slower and I was having problems with breathlessness and pressure in my chest when I exercised. Also, I had to cut out all alcohol because it increased my heart rate and made me feel weak and exhausted. Then, near the end of the 2 years I started becoming very tired and sleeping much more than I was used to. I had a very high fever one night and in the morning was unresponsive - ambulance took me to A&E where I had a cardiac arrest. It took them several days to do an echocardiogram but when they did, that confirmed the severe aortic stenosis.

It's hard to put it out of your mind and live your life - I tried to and was fairly successful - however, I didn't pay attention to some of the signals that something was wrong - mostly because I couldn't believe it could become so seriously in such a short time.

I had an aortic valve replacement almost 6 weeks ago and that was 5 weeks after having a cardiac arrest. (Also had mitral valve repair at the same time.) I'm feeing much better now. I'm 57. I'm able to walk about an hour a day (when I'm not too tired) and I can do cooking, housework and gardening. And, I'm returning to some part-time work this week. Oh, and I'm driving again.

Best wishes to you!!!

[DenHump]

Thank you for your response Im glad you are feeling better, good to hear about your experiences with alcohol as I thought it was just me being paranoid! Im trying to put it out of my mind but also trying to help myself by staying as healthy as I can, I do swim a lot and make sure I walk 10000 steps a day, when Im tired I sleep. Any other hints/tips are gratefully received.

[Gill1026]

Hi I had a repair to my narrow Aortic artery done in 1974. I have to have that redone in the future but am waiting for a date for surgery for my Aortic Valve which is now severe but I feel that the date is not coming quick enough. I too also have palpitations after alcohol. Have worked 30 hours a week up until 2 weeks ago. I have struggled with breathlessness and exhaustion for weeks but carried on working. Was taken into hospital 2 weeks ago with possible Sepsis or Endocarditis but it was actually food poisoning ( I was glad it was). But have now decided to go off sick until my surgery. I am 57 this month and finally accepting I need to slow down. Good luck ❤

[OttoK in reply to Gill1026]

Dear Gill, Many thanks. I am quite angry about delays in the NHS in general and when it effects you personally it makes it worse. A good thing is to keep phoning the consultant’s secretary and ask when the operation is, and say how you are feeling. Between getting the first test results and the surgeon I must have phoned about ten times. It took 6 months and I still don’t have a date for the op.

Good Luck, Otto

[OttoK]

Hi Ian. Very helpful, thanks.Otto