Hi all, I'm new to the forum. I'm 49 years old, eat healthily, exercise often and in half decent shape.(for my age)
In Jan '24 my wife had her head on my chest and commented that my heart sounded weird! Went to GP who diagnosed a heart murmur and sent me for Electrocardiogram, which came back normal.
I had an Echocardiogram this past Saturday, logged into my NHS app early yesterday evening, and the results/ letter from the radiographer were there to view.
I have been referred urgently to Cardiology with Severe AO valve stenosis with AO dilation.
I sat last night and tried to work through the letter myself.
The main points I picked out were:
Aortic valve heavily calcified
Severe stenosis with peak velocity detected from apex
Dilation of aorta at sinuses and ascending level. Aortic arch appears normal at 28mm?
Sinus of Valsalvia is 48mm
peak aortic velocity 4 m/s
Peak pressure drop 64mmHg.
I have tried contacting my GP to ask for them to explain the diagnosis, but have received nothing more than a text back basically telling me to try not to worry and Ill be in good hand with the cardiology team at the hospital! I'm beside myself with worry.. I've not slept all night so my spelling and grammar may be a bit off..
Is anyone familiar with this kind of diagnosis......possible treatment plans......etc..
Any advice/ info would be so much appreciated..
Written by
Greenie01
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Cardiology is now a fabulous service. They will fit a new replacement valve and you then get your life back.
I don’t read any of the technical stuff. I am not medically trained so I won’t try to do the doctors work. I just listen and ask what I can do to make the doctors job easier.
You are young to be stenosed but the age is not a big issue. You are younger and stronger and should ease through the procedures better than 70 somethings like me.
If you get classified as critical, then you can have a panic.
There are two main options…..a metal valve or animal valve. The animal valves have a limited lifespan. So probably metal for you. The op to replace the valve is incredibly safe. My surgeon had a success rate of better than 99%.
It is a lengthy op and you then have many weeks to recover. Your young years will work well for this.
You have been urgently referred to cardiology so just take it easy and go along to cardiology.
Before the op you will have three tests. A lung function test, and two scans. Then into the heart hospital.
I would avoid the internet sites. Stick to the BHF. Reliable and no nonsense. And monitored !
I was scared until I went in to the hospital. Nurses really calmed me down. And the long op …….all you know is going to the theatre and asleep within seconds. I didn’t even need the prelim sedation that is available to nervous patients.
I don’t think there is much choice. Replace the valve or die. You are far too young to opt out of surgery. There is aTAVI option which might appeal to you. It wasn’t for me, but you might prefer it.
When we are given this sort of information it’s as if the ground opens up under our feet, first reaction is how can this be happening to me. I had my Aortic valve replaced and a bypass 8 years ago, I was 68 a lot older than you but there are many members here on the forum that are your age and younger with the same issues.
First let me say it’s not the end of the world though it must feel like it, the cardiology team you will have are going to be the best of the best. Once you get to see the cardiologist and you are talked through what is wrong and what they will do to mend your heart, you will get back maybe life will be a little different you will have medication to take appointments to go to yearly is what I have, but there’s things you can do to help yourself. Listen to what you are told and follow their advice, telling you not to worry is not going to happen! Your brain will be in overdrive, been there! As I have said you are so young and I am very sorry you are having to face this, but please be reassured there’s life after this.
Please don’t go on Dr Google, rubbish information and most is out of date.
Once you’re told what they think is the best course of action tell us on the forum there are so many of us that will help you through. Remember you’re not alone. We are here has a shoulder to lean on.
How lucky that your wife picked that up and got you to get checked out 😊I went for an Echo in 2021 prior to having a stress test to rule out any heart issues. I was 54 and was breathless when exercising and the Cardiologist initially told me I was fine after my ECG came back as normal.
The Echo showed up a heart defect and severe Aortic stenosis and a Cardiologist was called in there and then to speak to me. He told me that I would need open heart surgery to replace my valve and I then went to pieces.
I went straight home and googled my heart defect and then the surgery... don't do that! It just scared me silly.
I ended up having to have quite a few more tests and then a few months later had OHS to replace my valve. All OK now but the time up to surgery and in hospital was very traumatic.
2 years on and most of the time I can forget that I even had surgery. I go to the gym and have an active job.
You will be OK, but it is very scary when you get this sort of news. Nobody else can understand unless they have been through it.
That is so kind of you to say. I do worry that I always then the answers round to my experience, but honestly if I got through it anyone can .....anxiety is my middle name 😩Joanne
Good morning , I am 64 and am now 17 weeks post open heart surgery for aortic valve replacement . Like you it was a complete shock .
I would recommend that you now do as much research as you possibly can .
Start with the NICE guidelines , these are the guidelines that you cardiologist will be following , just type into Google NICE Aortic valve replacement. Because of your age you will probably be guided towards a mechanical valve which will mean that you then have to take warfarin for life. It has to be warfarin it is the only anticoagulant that is licensed for use with a mechanical valve .
The new generation of drugs a such as apixaban are not.
There are new tissue valves , the Edwards Inspiris Resilia which are predicted to last longer (15 to 20 years) and some of which can then be replaced by TAVI if they start to fail, the data so far is said to be good and my surgeon told me that they are becoming more popular, they have been in use since 2017, perhaps research them . My own surgron said thst if I had been in my 50s he would have recommended mechanical but at 64 I was on the cusp and he would leave choice up to me . I didn’t want to be in this position again so I chose mechanical . But please do your research and speak to as many professionals as you possibly can. I belong to a couple of very good supportive Facebook groups Heart Valve Replacement and Warfarin U.K. and U.K. Aortic And Heart Defect pre and post op surgery. They are both very good , informative and supportive . Good luck
Just wanted to say that I was a nurse and then a midwife for 34 years so I am very careful about where I do and don’t do my research . By all means search the net but only use credible sources such as NHS, NICE or information from the big teaching hospitals . And don’t forget if you use USA sites their healthcare is very much led by what their insurance companies will and won’t pay for.
my echo on 1st August last year showed severe Aortic stenosis and after numerous tests cardiac appointments etc I am have now had my pre op for treatment (Valve replacement ) on 12 th June Easy to say but try not to worry they seem to know whether there is a rush or not . The worst time for me has been the waiting for something to happen but if you E-mail British Heart Foundation someone will get back to you . On this site we are only sharing but cannot diagnose or foretell how long each of us has to wait ( different areas and hospitals have different waiting times ) .
one more thought , the British Heart Foundation has a ‘phone helpline , Heart Helpline - speak with a cardiac nurse, is how it is advertised on their website . It is a freephone number open from 9 to 5 . I am sure that thy will be able to answer many of your questions .
Hi. Not advice/info as such but I am in a similar position to you with severe heart valve problems (in my case I have severe mitral valve regurgitation as well as severe aortic valve stenosis). I have been told that I definitely require surgery and am waiting for an appointment with the surgeon. What I want to say is that the best thing that I have done is to join this group. I was stunned, terrified and was feeling hopeless initially but since joining the group and also Heart Valve Voice has helped me so so much. Just reading posts from others who have been through the same or similar is such a comfort and a lot of people are so knowledgeable and so so helpful. I wish you all the best ❤️
Thankyou all for your replies. I had to take myself away from the internet as I had a bit of a meltdown over it all.
I've spoken with my cardiology department and my referral has been received. They said they are currently running a little longer than the 2 week timescale, so have opted to bite the bullet and pay privately for a consultation, just to try and settle me a little.
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