aortic stenosis

[Creme15]

just diagnosed with aortic stenosis - mild to moderate. Quite a shock when the Dr heard a heart murmur and ordered an echocardiogram. Any advice from others with this condition would be greatly appreciated.

[Yumz199725]

Hi Creme15Welcome to the forum and the aortic stenosis club 😅. Yours is mild to moderate which is a good thing when it's Severe they tend to worry. I have moderate stenosis and severe aortic regurgitation so closely monitored with echo's every year. Have you had any symptoms?? I understand that this will be a shock for you to be diagnosed with aortic stenosis! 💔 But be reassured you can lead a normal life I've had aortic stenosis and regurgitation for about 13 years maybe longer, I will require valve replacement surgery at some point but trust me dosent really affect you that much. Take care and wish you all the best in the mean time if you want to talk more just private message me and I will be more than happy to chat x 😊

[Creme15 in reply to Yumz199725]

Thank you for that information. I was diagnosed in January with atrial fibrillation after a spell of chest pain and high heart rate and given blood thinners and beta blockers. I then saw a dr 3 weeks ago who reported a heart murmur snd arranged an echo which showed the problem. He will refer me to a cardiologist for surveillance. I am due to go on holiday in 3 weeks so now awaiting a response from the travel insurer as to whether they will cover me. Hopefully they will let me know tomorrow. I don’t really have symptoms just bit short of breath now and again

[Yumz199725 in reply to Creme15]

That's good you don't have many symptoms, yeah I get random bouts of breathlessness alot but I do have asthma aswell so who knows what's causing it. I really hope your able to go on holiday x take care and all the best.

[Creme15]

thank you so much for your good wishes. I hope I can go too as it’s a family holiday with our two sons and granddaughter and at our ages - late 70’s could well be our last trip abroad. Take care and I wish you well

[Blackcatsooty]

dear Crème

I had mild stenosis for five years, then moderate for one year, then severe at which stage I had a new aortic valve.

Big op but the doctors and staff are superb. I was 72 when I had the new valve. About three months of recovery, but every day was better than the last. And then I had my life back. Fabulous.

The worst bit, by far, was waiting to go for the op. Once in the cardiac ward everything improved. The stress melted away.

Best wishes

Sooty

[Creme15 in reply to Blackcatsooty]

Thank you for that information. I’m 78 so may not make it to a new valve. I was so fit until January when I was taken to hospital with chest pain and high heart rate and diagnosed with atrial fibrillation so on blood thinners and beta blockers. I have a family history of heart problems so shouldn’t really be surprised. Just a bit of a shock. I am so pleased to hear you have had your operation and now feeling great again. Best wishes to you

[Blackcatsooty in reply to Creme15]

The great thing about being 70+ is that we will opt for a non metallic valve. No warfarin, no ticking, just a fully working heart. The transformation is just amazing. Your life is fully refreshed and you will be so well.

Sooty

[Creme15 in reply to Blackcatsooty]

Thank you very much for your response. I would not want a mechanical valve with the need for Warfarin and I may never need a new valve at my present age. It is great to get such reassuring responses. Best wishes

[DinoCat in reply to Creme15]

If you've currently been assessed as 'mild' to 'moderate' it could hopefully be years before it reaches 'severe' and requires a replacement valve operation. As an alternative to full open heart surgery at (say) 80+, your surgeon might consider a TAVI valve which is a far less invasive procedure (basically catheter inserted normally via an artery from the groin).

If your Dr considers you're fit to travel for your holiday, your existing travel insurance might well still be valid as you presumably didn't know about the Stenosis diagnosis when the holiday/insurance was booked? But maybe that's subject to the insurer being aware of your January problems? Obviously not a good idea to travel without proper insurance cover. Good luck & hopefully Happy Holiday!

[Creme15 in reply to DinoCat]

Thank you that is reassuring and I expect annual echocardiograms will be the treatment plan. The procedure you mention sounds much better than open heart surgery. I wouldn’t want a mechanical valve by preference as it seems that Warfarin then has to be taken ad infinitum. My husband was on that initially some years ago and I would certainly find it too restrictive loving green vegetables as I do. Hopefully my valve might last a good while longer. I have declared the January admission when atrial fibrillation was diagnosed. I even declared pleurisy which I had as a very young woman as I know how carefully insurers scrutinise medical records before paying up! I’m sure they will want more money from me but that’s ok as long as I am covered. I suppose it’s best I have found out about the problem rather than keeling over while digging the garden!

[DinoCat in reply to Creme15]

Yes, it's definitely best to know & annual echocardiograms should give plenty of warning about if/when a replacement valve is needed. Aortic stenosis can be relatively symptom-free, as in my case when I was diagnosed last yr (age 69) at the 'severe' stage. I've now had 'minimally invasive' surgery & a Biological replacement valve, which (as you say) avoids the need for Warfarin long-term.

I'm sure you'll get good advice from your Cardiologist/Surgeon about valve choice, if/when necessary. I think surgeons still tend to prefer conventional surgery rather than a TAVI valve procedure unless they have concerns about whether a patient could tolerate the former (due to medical condition or age, for example). But you would obviously be part of the decision-making process.

Yes, it sounds like you should be OK re travel insurance, even if you have to pay a supplement, so have a great trip!

[Creme15 in reply to DinoCat]

Thank you. So pleased you are on the mend after getting sorted. I have managed to get insurance luckily or would have had to cancel disappointing our family as very probably the last holiday abroad for us. Now I won’t dare go to the GP for anything so as not to have to report it! I’m just so pleased to be getting such a lot of positive feedback from fellow sufferers! Take care of yourself.

[Safeangel]

I am also in the same boat and I went on holiday last month and insurance was fine with my BAV plus I have an ascending aneurysm. Just ended up paying around £270 for insurance but it was worth it and I enjoyed a week of sun and relaxation. All the best and fingers crossed 🤞

[Creme15 in reply to Safeangel]

Thank you so much for your response to my post. I am hopeful the insurance company will get back to me and offer cover for my condition. I accept they will want more money but unless they want thousands I will pay up. I will see what transpires. I’m just so pleased I joined this group as I’m getting some really positive responses. Best wishes and thanks again.

[Football-Mum]

Hi Creme15

I totally understand your feeling of shock; I was diagnosed with Aortic Valve Stenosis when I was 6 months pregnant and felt like my life turned upside down! I was moderate and it was 16 years before I got to the stage of needing a replacement which I had in February. Like Yumz said I had Echo and Consultant appointment every year up to that to check on the condition of the valve. I still did exercise with the acknowledgment I was never going to run a marathon and I didn’t find the condition that limiting. I was always able to get travel insurance as I wasn’t ’waiting for treatment’ but I admit I am a little younger than you.

Wishing you all the best for your holiday and future with AVS.

[Creme15 in reply to Football-Mum]

I can imagine your shock when diagnosed- looking forward to your new baby and told you have a heart condition. I feel much less anxious now I am getting such positive responses to my post. I should be grateful it has been found I guess although I had no plans to jump out of a plane or go mountain climbing. I will have a list of questions to ask the Cardiologist when I get my appointment. Thank you for your encouraging post. Best wishes to you

[Cat04]

Do you know from the echo report whether you have a bicuspid aortic valve? These do calcify and get stenosis, which is stiffness of the cusps or leaflets restricting blood flow and increasing pressure of the blood through the valve, more often & quicker than a valve of normal structure. Your valve may never deteriorate to requiring replacement but you should be monitored regularly to check on its status. There is an alternative to open heart surgery called TAVI which is a replacement valve implanted through a vein into the heart. At mild to moderate stenosis I doubt that you require any intervention just yet unless there are other diagnoses present warranting surgery. I had my BAV replaced earlier this year after15 years surveillance, when it suddenly and unexpectedly deteriorated. I also had an ablation for AFib/AFlutter at the same time and a clip put on my left atrial appendage to help prevent clots from the arrhythmias causing a stroke.

Make a list of questions you want to ask the cardiologist at your appointment. There is also a lot of helpful advice on the BHF website and nurses available to ring for advice if you want.

There is a small friendly Facebook site

UK Aortic and Heart Defects pre surgery and post surgery

where we are all in the same or similar situations. It is so supportive and helpful & you would be very welcome to join.

Best wishes and enjoy your holiday 😊

[Creme15 in reply to Cat04]

Thank you so much. I was just told by the Chest Physician that I have a narrowing of the aortic valve and he is referring me to a cardiologist. He said I will probably have annual echocardiograms to check. I will certainly make a list to ask the Cardiologist when I see him. I’m so pleased I joined this group as I am getting some really positive and reassuring responses. Thank you again.

[netie54]

I was first diagnosed, through anaesthetic detecting a murmur, nearly 30 years ago. Since then it has progressed from mild to moderate where it is at the moment .

I have no symptoms at all. I am monitored every year by echocardiogram.

My last echo last month showed no change but I was lucky enough to have feedback from the head of cardio intervention Professor who went into great detail with me. A lot of which I already knew. He confirmed that my stenosis would need to be severe before an intervention would happen and then it’s all systems go !!

From where I live it would either be Papworth hospital or St Bart’s in London.

He couldn’t give me an estimated time from moderate to severe as despite all his vast experience he couldn’t call it but said to be “it could be 2 years or it could be 10” but he assured me that I would be monitored yearly has I have been for nearly 30 years.

Hope this helps. Kind regards Annette

[Creme15 in reply to netie54]

That’s really encouraging Annette. Thank you so much for that. I’ve been sitting at the computer all day as the travel insurance I had taken out in June in readiness for my holiday in Minorca wouldn’t cover me. I’ve found one that will (for a price) but at least it means I can go away for a family holiday with peace of mind. There are much worse things to be diagnosed with it seems and at least the condition can be cured. Best wishes to you.

[netie54 in reply to Creme15]

I am doing the same thing as we li e in Spain 6 months of the year. Just look for aorta stenosis and it should come up on the insurance online quote.

[netie54 in reply to Creme15]

Reading your post again I am very surprised you are having difficulties getting insurance. Try Insuranceto Go.

Regards Annette

[elephantsaregreat]

Hi Creme 15, Yes it is quite a shock when stenosis is uncovered. They have discovered yours early which is great and you now have loads of time to understand your condition and all that goes with it. Mine was discovered in a murmur when i had a chest infection after covid which turned out to be a bicuspid valve medium to severe stenosis. Nearly 2 years later i had a new aortic valve and mitral valve repair(very leaky valve) this was 4 weeks ago today at Barts. I had a mechanical valve replacement. Looks like you are in very early stages so could be many years. You are in very good hands. Welcome to the forum and good luck. Stuart

[cappachina]

Hi I am 76 and had a valve replacement via TAVI in April.It was such a good way to have it done only 2 days in hospital and I started to few a lot better three weeks later I did the cardio rehab course and surprised myself at getting to the top level Hopefully you will be suitable too

[Creme15 in reply to cappachina]

Thank you - that’s so good to hear. Take care and hope you are soon back to full health.