please advise

[Jjjimo]

Hello , I have been diagnosed with aortic stenosis, I have had a echocardiogram each year for 5 year. I have been advised that valve is in the very severe category. What are the specialist likely to do, will it be an operation?

[Rhinos67]

Hi there, if you are now in the severe category your valve will most likely need to be replaced.Dependant on your age and health it would be either open heart surgery or TAVI

I'm not sure where abouts you are in the UK, but I was given a mobile number to contact the valve nurses and 1 in particular helped to get me through my journey.. I rang her if I was unsure or worried about anything and she was my go between to contact the surgeon or Cardiologist on my behalf

I was told there and then, when I had my Echo that I would need OHS.. This all can out of the blue and I struggled coming to terms with it.

I'm now over 2 years post surgery and all is good.

I joined a Facebook group... UK Aortic and Heart Defects Pre and Post surgery and received so much support, reassurance and help from them so would highly recommend

Please ask anything else that you need to know and I will help if I can

Joanne

[Jjjimo in reply to Rhinos67]

Hi , thank you for replying, ì am 74 years old, I had bad pains in my chest and they sent me to Harefield hospital 5 years ago. The pain stopped. Harefield said I had a heart murmur and aortic stenosis. Then sent me to near where I live Stoke manďeville hospital, aylesbury. I have seen a specialist each year and have gone from mild to very severe. The special has told me in this latest letter, that he will make arrangements for me to see him very shortly, to discuss about doing something with the valve. I am quite active, and don't have any pains in my chest.

But I am worried , I will definitely join the Facebook page. I have told my children. But don't know what comes next. What is a TATAVI. Thank you Joan

[Rhinos67 in reply to Jjjimo]

The TAVI is less invasive. They don't remove your old valve, they for another over the top. They go on through an vein in your groin using a catheter I think.It's good that you are active. I was told to stay that way, but also told no stairs, hills, heavy lifting once I was diagnosed. I walked every day and that helped with my anxiety too.

Start writing questions down now to ask your Cardiologist, anything that you are unsure of or want to know.. I asked the most ridiculous things, but they were important to me!

There are several in the Facebook group who have had valve replacement in their 70s and I know that they will be able to help and reassure you 😊

[Jjjimo in reply to Rhinos67]

Thank you, I live in a bungalow, so don't have any stairs, I walk each day down my road, but cannot go down the road to the shops as I cannot walk back up the hill home. Luckily I can drive. But I do a lot of gardening and walking. Thank you again I don't feel so alone.😀

[Vms49 in reply to Jjjimo]

I had my Tavi on the 12th June this year at lgi and it is less invasive .there is a video if that’s the route they decide to go then ask your Tavi nurse for details so you can watch it . Everyone is different so only your cardiologist can say what is best for you . They are very good at answering your questions and very patient at explaining things .

[Jjjimo in reply to Vms49]

Thank you, i will write some questions before going therefore. I will see what the specialist says.says. interesting about the Tavi.

[Happy2BHardcore in reply to Jjjimo]

Hi Jjjimo I have the same thing aortic valve stenosis serve I'm 37 and it's really worrying but yeah apparently they either use a camera and open the valve back up or replace it completely with either a pigs or cows valve or a metal one scary stuff I must say I haven't slept properly since hope your coping well

[Yorkshirehead in reply to Happy2BHardcore]

Hi, Please see my earlier reply. I was 29 when I had my mechanical valve fitted. I am now coming up to my 72nd birthday and still walk and ride my bike regularly.

[Jjjimo in reply to Happy2BHardcore]

Thank you, I will have to wait and see. I didn't realise there were so many valves to replace the valve.

[Daisyblu]

I had aortic stenosis and an aortic valve replacement with open heart surgery when I was 46. I am now 71! It's a scary time but I recovered quickly and have led a full and active life. My artificial heart valve is still functioning very well .I now have atrial fibrilation but that's another story! Good luck with your procedure.

[Jjjimo in reply to Daisyblu]

Hello, Thank you for replying, I was shocked when I heard the news that the valve was very severe. Do I have to change my lifestyle and diet. But thank you for letting me know what you went through.

[cappachina]

Hi Join the facebook page. They are brilliant I had a TAVI last year at the age of 75 Much easier op and you should be home in 2 days with no chest cut open just your groin wound to heal so that option is brilliant if you are suitable to have it

[Peter-l-h]

TAVI 21 months ago then 76. Wythenshaw Hospital we’re brilliant.

Mental side difficult but good family support .

Best wishes PLH

[Yorkshirehead]

Hi, If it comes to replacing your aortic valve I hope the fact that mine was replaced 42 years ago and is still going strong gives you some reassurance. Forty two years is a long time and there have been huge advances since then.

I wish you well for the future.

[Jjjimo in reply to Yorkshirehead]

Thank you.

[Jjjimo]

Thank you, I was concerned what they may do, as I am 74. But it all depends on how severe it is. Thank you