aortic stenosis

[Ronan Mannion]

Hi my name is Ronan aged 36 and I have been diagnosed with Aortic stenosis, At first they thought I had a bicuspid valve but after cardiac mri that was not the case but that the valve was so calcified that it did not show up on the ecograph. The gradient of Aortic Stenosis I have is 34 and I have been told that it is on the moderate to severe scale, I’m due to meet with a Sergoun in January for his opion and am just wondering will I need to have the valve replaced. I would greatly like to here any of your opions on this thanks

 

[Paleowoman]

Hi Ronan - welcome to the forum ! If you have aortic stenosis then, yes, you will have to have the valve replaced at some point as the stenotic valve will affect your heart adversely at a certain point in time. But lots of us here have had our valves replaced and we're here now to tell the tale ! If your valve is not bicuspid you should probably be asking why it is so calcified at your young age. Bicuspid vavles become calcificed due to the turbulent blood flow thorugh a two leaflet valve, but for a 'normal' valve to become calcified at your age is quite unusual I think.

 

[scott.eitman]

I agree with Paeogirl. I will add that you did not give us a lot to go on, like do you have symptoms, what is your EF... I have to assume that you are seeing a surgeon because someone must think you need surgery. I believe you should ask a Cardio why they feel you need surgery now vs later. It is OK to ask these sorts of questions. When my Cardio told me in 2008 that I needed surgery, I flat out told him I did not need it. He allowed me to wait. Now I need to say, he and I have known each other for about 10 years. He knew I know my body.

 

[AZ Don]

Yes, you will likely need surgery but not necessarily right away. It is possible they will suggest to wait and monitor your condition every 6 months to a year. Typically surgery is held off until stenosis is bad enough to cause symptoms or put your health at risk. The idea is that the risks of the surgery are postponed until the risks without surgery are higher, but surgery has improved so much over the years that I think the risks of surgery are lower at that point (and very low in general), especially for someone so young.

This website is a great resource to learn more and to hear and share experiences with others in a similar situation. Another good resource is: http://www.heart-valve-surgery.com/. Although I haven't read his book he has hosted a couple webinars that were surprisingly informative.

 

[haggis basher]

Hi Ronan
I had always been a good long-distance runner, but in early 2011 (71age), started to have breathing problems - diagnosed aortic stenosis!
Being a 'public' patient in Australia, I was told it would be done in approx 2-3 months. By six months and still not operated on, I couldn't walk up a small incline coming home without stopping many times!
I called my cardiologist - I was operated on within 2 days!
Now, over 3 years later (75 age), I have ran many races, and I am training up for a 14km x-country run in February (Sri Chinmoy). I do my home weights most days, and told I look extremely young for my age. (Nothing like being honest LOL).
Let us know what the surgeon suggests.
See Yaa
Brian

 

[Ronan Mannion]

Thanks for the reply's guys and sorry for the brief description in my post. It all started for me this year, I do allot of Half Marathons and for some reason this year I found myself having to push myself much harder and my times were getting worse and I couldn’t understand this as it should have been the other way around. The last one I done I really struggled through it and taught I would not be able to finish. Sometimes after a run and mostly at night while lying in bed I would get severe chest pain but did’ent think anything of it. A few months ago I got a few Dizzy spells and a bit of double vision and a friend told me I should get it checked out, I was referred to public hospital where they carried out various tests eco ect.. and discovered a narrowing in my valve and the then referred me to a cardio consultant she redone the eco and every time they kept asking be had I ever had Rumatic fever but I hadn’t. As I said before at first she taught my valve was Bicuspid But that was not the case and she was very surprised at this as the valve was so calcified. I don’t know much more than after my angiogram she told me that all archery’s were fine and that my gradient was around 34 I don’t know what my EF was as she speaks very fast and could not take it all in, She referred me to see a Surgeon sometime in January for his option and she said that sometimes they might like to leave surgery for a while and he might just say it’s as well to get it done now !!. I had it in my head that I had to have it done and I think I would not like to have it hanging over me. I have a history of heart related deaths in my family more recently my first cousin died of Sudden heart failure aged 24. I don’t have any other symptoms other than the chest pain I was getting as I do get really tired but that might be down to a working life with 3 young children, I have had heart palpitations on and off.

 

[Agian]

Your cousin dying so young is terrible.

You may have had rheumatic fever and not known about it. At least if you don't have a bicuspid valve you won't be at risk of the stuff associated with it. If it's a straight valve job, they might be able to replace it via a smaller incision between the ribs.

I also hate this hanging over me. I believe what people say about the waiting being the worst.

 

[epstns]

Ronan,
The fact that there is a history of heart-related early death in your family could mean that there is some hereditary issue at work here - something beyond the usual things many of us have dealt with. That said, the path the disease takes is similar, regardless of its cause. Usually our stenotic valves do degrade over time. I was originally diagnosed as having moderate-to-severe aortic stenosis at age 51. I finally had my valve replaced at age 63. During the interim years, I did just about everything a man my age (or younger) would do. I maintained a high-stress executive career, raised a family, ran, lifted weights, did home improvements -- you name it. As long as I had no "real" symptoms, I was simply monitored - initially once a year, eventually twice a year. Only in the final year prior to surgery did I admit that I had any symptoms, and mine were simply those of losing my stamina and exercise tolerance.

I had my valve replaced almost 4 years ago now, and I feel better and am in better shape now than I was in the years ramping up to surgery.

At your present status, they may or may not feel that you are ready for surgery. Either way, it all works out. If you're not yet ready, just live life as you ordinarily would, with the addition of scheduled cardiac exams. If you are told that you are ready now for surgery, just do it. It sounds scary, and you will have all sorts of questions (which the folks here can help with), but the statistics are overwhelmingly in your favor. For younger patients (my surgeon said that even at 63, I was younger than a lot of his patients) with no serious co-morbidities, the surgical survival rate is over 98%. That is right up there almost with a simple appendectomy!

Hang in there! Welcome to The Waiting Room - the virtual room where many folks await their own turns at valve surgery. Pull up a chair and stick around. Ask all the questions you want. We'll be here to help.

 

[Ronan Mannion]

Just been admitted today and will have my Mechanical AVR Tomorrow really nervous now hope all goes well

 

[Paleowoman]

All the best for tomorrow and for a speedy recovery after !

 

[epstns]

I just saw that you've been admitted. Obviously the docs decided that the time is right for your valve replacement. They have all the technical issues under control, so all you have to do is follow instructions. Don't worry about the future, as you will be directed one step at a time until you are ready to be released on your own again.

Come on back and tell us all about it. We'll be here, waiting to hear how well you're doing. (You younger folks usually do really well.)

 

[dick0236]

Best wishes. By the time you read this you'll be out of surgery and on your way to a healthier life. You and I have a lot in common. My diagnosis was also Aortic Stenosis, few symptons, age 31 and had two young children......when I received my mechanical valve. In a few days I will be 79.........now have great grandchildren......on same valve. My decision to have the surgery was one of the smarter things I've done in my life.