Advice needed re aortic stenosis - British Heart Fou...

British Heart Foundation

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Advice needed re aortic stenosis

MacRodney
MacRodney

I have just been diagnosed with mild to moderate AS my GP gave me results I have no symptoms but have scared myself to death googling the condition . I have been told they will just monitor it. I am going on holiday on thursday and finding it hard to get travel insurance which is worrying me as well. I am 64 previously healthy 20,000 steps a day so all this is very frightening. How quickly does it go from mild to moderate to severe? I am not due an appt with the cardiologist until after my holiday.

19 Replies
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MichaelJH
MichaelJHHeart Star

Hello and welcome to the forum! You have learnt the first lesson - do not use Dr Google! When I was diagnosed with four severely narrowed arteries I made the mistake of looking. Arghh - the LAD us known as the "widow maker"! It is advisable to stick to the BHF and NHS websites, including your hospital one, as much information elsewhere is out of date and, too often, inaccurate.

On to your condition. Unfortunately it is a similar question to "How long is a piece of string?". If you think about it some people need stents/bypassing in their twenties, others in their seventies. Much will depend on your response to medication and any lifestyle changes. You will obviously be monitored regularly and when the time comes have OHS or TAVR (minimally invasive). Good luck!

MacRodney
MacRodney in reply to MichaelJH

Luckily I have no symptoms and previously very healthy do I just carry on as normal? I have two holidays booked for August in spain is it ok to fly. I enjoy a few glasses wine at the weekend and will obviously be eating and drinking while on holiday is this ok? Like I said my appt is not until 2nd August and I am due to go away until the 25th July

MichaelJH
MichaelJHHeart Star in reply to MacRodney

Nobody here can give you a definitive answer. It's probably worth contacting your GP surgery tomorrow to ask.

MacRodney
MacRodney in reply to MichaelJH

Thank you

jimmyq
jimmyq in reply to MacRodney

You could discuss it with your doctor and/or call the BHF Heart Helpline on 0300 330 3311 (office hours) and talk to a cardiac nurse about it.

MacRodney
MacRodney in reply to jimmyq

Thank you

HarryBell
HarryBell in reply to MacRodney

ps I would cut out alcohol and caffeine- just do it! You will feel better for it.

Hey MacRodney. I had an AVR at age 50 in December having been severe for a good decade and mild to moderate for maybe two before that? So it can progress slowly, stay stable for many years, or worsen quickly! Everyone is different. I went for regular two-yearly checks, to annual, to six-monthly and then surgery. I also travelled loads in that 20-30-year period and right up to my operation didn't feel I had much in the way of symptoms - though the improvement I've felt since showed me that in fact I had had gradual symptom for many years. So essentially no need to panic and you'll be in good hands (and better than finding out in A&E) but as I say everyone is different and these things can progress differently. But hope that helps to reassure a bit. Good luck! Nic x

MacRodney
MacRodney in reply to Nic25

Thank you I need positive replies like yours

Try Boots I got my insurance with them didn’t even know they did insurance until my friend phoned me and told me. If you haven’t tried them ring them they are very helpful.

My husband has had aortic stenosis for years. We do try to have healthy eating diet ( at least 75% of the time!!) Just has yearly echo cardiogram. The insurance issue may be because you have an outstanding appt. With cardiologist. Perhaps GP would give you a fit to travel letter ( at a price!) but insurance may take some tracking down. BHF have a list. We've used flexicover, staysure and allclear as brokers. Some insurers have the same underwriters but diff companies. My husband has just carried on regardless ( he has other heart issues as well)

It can progress rapidly or stay stable for many years. It may be possible to arrest progress or reverse it- although current medical opinion is against this view. If you move towards a plant based diet it will help, also it may be helpful to try a supplement of Vitamin K2 with menaquin- there are a number of clinical studies looking into this. This is a summary of its supposed effects:

Vitamin K2 is believed to help by preventing calcium from being deposited in your arteries.

In one study spanning 7–10 years, people with the highest intake of vitamin K2 were 52% less likely to develop artery calcification and had a 57% lower risk of dying from heart disease.

Another study in 16,057 women found that participants with the highest intake of vitamin K2 had a much lower risk of heart disease — for every 10 mcg of K2 they consumed per day, heart disease risk was reduced by 9%.

On the other hand, vitamin K1 had no influence in either of those studies.

However, keep in mind that the above studies are observational studies, which cannot prove cause and effect.

The few controlled studies that have been conducted used vitamin K1, which seems to be ineffective (13Trusted Source).

Long-term controlled trials on vitamin K2 and heart disease are needed.

Still, there is a highly plausible biological mechanism for its effectiveness and strong positive correlations with heart health in observational studies.

This vitamin is produced by Nato Pharma of Norway.

Exercise is always good but I advise not to train as if you are entering an olympic event, monitor your heart rate and keep to a level when you can talk easily at the same time as working out.

While all of the above may prove to be unsustainable I feel that lifestyle can impact positively on Aortic stenosis, so do not get too depressed because that will not be too good for you.

All the best a fellow sufferer Ron

MacRodney
MacRodney in reply to HarryBell

Thank you very interesting. I love my cup of coffee every morning and my few vinos at the weekend but thanks for the advice

My aortic stenosis was not found until my valve was 75% closed and I was still asymptomatic. I was told that I needed the valve replaced within two years.

Hidden
Hidden

Hi, I was in your situation over three years ago (mild-intermediate) having been running 5K every day. AS can be symptomatic or asymptomatic (with or without symptoms). I was put a 2 yearly echo CG then a one year.

One thing that became clear to me (and is supported by independent clinical opinion) is that an echo cardiogram is very subjective (the accuracy of the results depends almost entirely on the experience of the person carrying it out). My last two tests both indicated an intermediate level of stenosis yet after the last one which was a transesophageal echo CG I was advised I should have AVR surgery. This latter procedure known as TOE is supposed to be more accurate as the transponder is inserted into your esophagus and therefore closer to your heart.

However, as stated in previous replies, the progression of this condition can vary widely and some patients re asymptomatic up to the point of surgery. This group tend to have a better long term prognosis.

I was very slightly symptomatic at the time of my surgery which was three weeks ago. I am now waiting to see when I will reach the point where I feel better than I was immediately prior to surgery.

AS is a relatively common condition in people over 65 and many are never aware of it. In my case I only found out after a severe sore throat. The GP asked if I had a cough and when I said yes he listened to me chest an then my heart and said I had a heart murmur (caused by AS). Interestingly I had never had any GP listen to my heart for at least 15 years prior to this.

I hope this information helps -the main point being you are by no means alone. You should continue to use this forum if you have further questions. There are very few GP's or consultants that can speak with first hand experience on this topic!

Regards, Mike.

MacRodney
MacRodney in reply to Hidden

Thank you mine was picked up re a heart murmur as well I was never aware of it, luckily I very rarely had go to the docs. I Will be interested in how you progress good luck

I was diagnosed with a heart murmur at 16 (aortic valve regurgitation) and didn’t have any surgery until I was 52, so very much depends on how quickly it progresses, if at all. I was monitored every year and didn’t really have any appreciable progression for years. I was told to just get on with my life and worry about it when there was something to worry about.

Hope you have a great holiday.

Wendy

Thats what I like to hear thank you.

Thank you everyone for your brilliant advice you really are a positive bunch . I went to my GP yesterday who answered a couple of the questions on the travel insurance that I wasn’t sure about. Came home phoned Insure & Go’s customer helpline and had it sorted in 10 minutes. The price was pretty good considering £50 for 5 days so good to go

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