Another newbie to this site

[ALCapshaw2]

Many Cardiologists (including mine) and Surgeons use 0.8 sq cm as a 'trigger point' for recommending Aortic Valve Replacement.

Weight Lifting is a definite Risk Factor with Aortic Stenosis, but I am a little surprised by your Doctor's advice to stop running. Many of our members were allowed to continue *moderate* aerobic exercise.

We have an expression on VR.com that goes:
"The Worse it Gets, the Faster it gets Worse"
so you might be wise to start Surgeon Shopping
just to "Be Prepared". You really do NOT want
to be selecting a Heart Surgeon from a gurney
in an ER somewhere!

BTW, It is not uncommon for active / fit individuals to 'think' they are non-symptomatic. Most of them say 'oh yea, I guess I really was symptomatic' after having surgery and getting back in shape.

Welcome Aboard!

'AL Capshaw'

 

[ottagal]

Hi Al,
Thanks for the good recommendation. I am going to ask my cardiologist in the fall to meet with a surgeon for the very reason that you explained. I did ask my cardiologist about surgeons at the last visit, but he felt I was "jumping ahead". I agree that I don't want to be in an emergency situation when choosing one. Regarding exercise, he told me that I could walk, take one to two flights of stairs (up until my visit I was taking 8 flights of stairs every mornig at work), and I could go for leisurely bike rides. I think that he was concerned that I might maintain my same level of physical activity and perhaps is being extra strict. Who knows...
Glad to be on board!

 

[ottagal]

Wanda, welcome to the forum. It sounds like you should begin selecting/consulting a surgeon and valve type.

Thanks Aaron.
As you can see from my post response to Al, I will be doing exactly that!
Appreciate the warm welcome.

Wanda

 

[Bina]

Wanda, I know 3 people who have had VR at Ottawa H.I.
2 had St.Jude mechanicals, and 1 had a tissue valve.
I'll try to get some references for surgeons, just in case you want more options.

 

[ottagal]

That would be fantastic! Thanks you for that!

 

[ALCapshaw2]

Hi Al,
Thanks for the good recommendation. I am going to ask my cardiologist in the fall to meet with a surgeon for the very reason that you explained. I did ask my cardiologist about surgeons at the last visit, but he felt I was "jumping ahead". I agree that I don't want to be in an emergency situation when choosing one. Regarding exercise, he told me that I could walk, take one to two flights of stairs (up until my visit I was taking 8 flights of stairs every mornig at work), and I could go for leisurely bike rides. I think that he was concerned that I might maintain my same level of physical activity and perhaps is being extra strict. Who knows...
Glad to be on board!

Just to be on the Safe Side, I'd recommend starting your surgeon search sooner rather than later. The Really Good Surgeons are often booked for several weeks in advance and with BAV, your surgeon may want some more tests (Chest CT or MRI) not to mention the usual Cardiac Catheterizaton / Angiogram to look for signs of Connective Tissue Disorder (i.e. aneurisms).

You may want to check out Dr. Tyrone David, head of Cardiothoracic Surgery at Toronto General Hospital (see http://en.wikipedia.org/wiki/Tirone_E._David)

He is a World Renowned Heart Surgeon and has operated on several of our members, all with glowing reports. You may even be able to do a 'self referal', just call his office and tell them your diagnosis. (That works in the USA anyway). They will want to see you latest Test Results and actual Tapes for review.

FWIW, my Cardio recommended AVR when I was at 0.8 sq cm. It took a month to get in to meet his recommended surgeon and another month to get surgery scheduled. I won't go into the details, BUT, I believe I got into surgery 'just in time'.

Good Hunting!

 

[pamela]

Another question you need to address is how long has it been since your cardio has been to a seminar. I know most docs try to stay current but if they've been busy, or if he's been ill or otherwise unable to keep up, then his information may be a bit dated. Many doctors who are in practice only see heart attack patients and not valvers, you are unique, and if you're bicuspid, there is a lot of new information about the disease out there.

So, don't wait for your doc to ask experts for you. Know your questions in advance and then you'll have the answers on time. The best thing you can do is to test your doctor with the question: If you were me, what would you do and who would you see?

 

[emc07]

Welcome!

Welcome!

Welcome Wanda,
This site is invaluable to people going through what we are. People here are very knowledgeable and encouraging. I thank God every day that I found a site like this.

I was training for a half marathon when I found out I needed surgery... Of course the Dr. said I should stop the training, but that I could run 2-3 times a week, but just make sure not to overdo it. I was surprised as anyone that I needed surgery. I figured someone training for a half-marathon wouldn't need it so soon. I was wrong. I thought I was Asymptomatic up to that point. I was wrong about that too. It's weird how this creeps up on ya. I guess I was always going to have it, it was just a matter of time.

Anyhoo, welcome and know that there are many people here that will help you through this whole experience.

 

[netmiff]

Welcome Ottawagirl! you've found a good place to be. You can ask anything that's on your mind, and you will (a) find a zillion people who have had it happen or have some experience and (b) will always be taken seriously, no matter how stupid it seems.

I had murmur detected in 1985; referred to a cardiologist about 8 years ago for annual followup; three and a half years ago, my cardio said it had gone from "sometime . . " to "sometime soon"; then 18 months ago it was, "now". Well, both times I just about fell out my chair with shock! No, it's not me, must be someone else's echo or something, I feel fine, really, etc, etc. etc. But I got it done within 6 months and feel better. Must admit, it takes some getting used to, though!

 

[hall]

Hi Wanda and Welcome! Please keep us updated.

 

[Cooker]

Wanda ... Welcome to the zoo ... wishing you the best!!!