Newbie

[tprice54]

Hello. Found this site the other day, and now need to talk. I am 51, with a bicuspid aorta valve and MVP. I have not had any symtoms, but had an echo done based on what the dr. heard as few weeks ago with his stethoscope. Anyway, the echo results came back and the cardio states there is severe stenosis of the aorta valve and it needs to be replaced asap.

However, I am a runner and have done several marathons, including the Disney World Goofy challenge this past January (half marathon on Saturday and the full on Sunday!)....anyway, Just wanted to thank everyone for this site, and hoope I get better news when I visit the cardiologist.

 

[Der Biermeister]

T
First of all WELCOME. You came to the right place because there is TONS of experience just waiting for you to tap into. Not to mention the new friends you are going to make.

Sounds like you are in the category of asymptomatic -- which many here were. But if they say it's severe, then go ahead and get it done pronto. I was hoping to put mine off until next Fall/Winter -- but I would have been playing Russian Roulette with the old ticker. So -- I've given up the spring and early summer in racing my sailboat. And no motorcycle rides to the mountains for eight more weeks. You gotta do whatcha gotta do.

 

[Karlynn]

You will want to check out our Active Lifestyles forum. We have many athletes, and marathoners are among them. Right now you may think you don't have symptoms. The body is very clever in making adjustments for decreased physical ability and sometimes people only realize how "symptomatic" they were after they've had surgery, recovered and notice how much better they feel. Or...you may not notice a change.

Welcome!

 

[Janea]

Welcome aboard

Welcome aboard

Hi, so glad you have joined us. I am a runner too. I had a severely leaking mitral valve and no symptoms just like you. It was just a fluke/miracle that I found out. I ran a triathalon last summer and I did a stress test and everything to make sure my heart could handle it. (it was moderately leaking then). They were impressed at how long I could stay on the treadmill and figured that everything was hunky-dory. Six months later they found the leak was worse and within weeks I was scheduled for OHS. My advice-- get it fixed sooner than later...less damage will be done to your heart and better chance of making a full recovery. I am thinking about running my first marathon a year from september. Gotta try my new valve out! Best wishes to you and let us know what you decide to do!
--Janea

 

[FredH]

Don't go by How you Feel

Don't go by How you Feel

Hi and welcome to the site. I was diagnosed at the same age and told I had 5 years at best before surgery. I had it checked every year and showed not problems but the 5th year I had some very minor symptoms and found out it had gone down hill fast. If they say it is serious don't depend on your symptoms that could be a big mistake. Basically I felt fine but my doc said every day I went without surgery I had a 50/50 chance of dying. He said with surgery I had about a 2% chance. Talk with your doc but I think you will find it is a not brainier. good luck

 

[Mary]

Hello. Found this site the other day, and now need to talk. I am 51, with a bicuspid aorta valve and MVP. I have not had any symtoms, but had an echo done based on what the dr. heard as few weeks ago with his stethoscope. Anyway, the echo results came back and the cardio states there is severe stenosis of the aorta valve and it needs to be replaced asap.

However, I am a runner and have done several marathons, including the Disney World Goofy challenge this past January (half marathon on Saturday and the full on Sunday!)....anyway, Just wanted to thank everyone for this site, and hoope I get better news when I visit the cardiologist.

I would press to have a TEE for confirmation of the severe stenosis, then visit with a surgeon to see what he has to say. The TEE might show that the stenosis is not as severe as first indicated, and there can be wide variations in what echos show.
Good luck!
Mary

 

[hensylee]

welcome, T - if he said pronto, then you have found the best place you can be to learn all you need to know to get you over the mountain and it sounds like that's where you're going (climbing). Our members can answer just about every question you have and if not, will find an answer for you. We've got lots of runners here. They'll give you lots of info. Many have returned to their running.

Read all you can and ask lots of questions - keep us posted on what your cardio tells you.

 

[twinmaker]

WELCOME! We're glad you found us. There are so many people on this site that are so knowledgeable. I've learned a lot in a short time from them. And we all have our own experiences and sharing them is the best thing of all. Again, we're glad you are part of the family! LINDA

 

[tprice54]

Thanks so much for everyone's responses. What an amazing site! Already, I know that how I feel is no real indication. Listen, read, learn. I was so afraid running was over for me, but now I realize it is not. So, all good news!

 

[RandyL]

keep us abreast of the situation

 

[Phyllis]

Dick was very active right up until his surgery. He also had no symptoms until one major big one- he fainted on the tennis court. That was in Oct. and after cardiologist and surgeon consultations, he was operated on in December-severe calcification of the aortic valve. We truly believe that because he was so active, bike, tennis, golf, boating, swimming, his heart compensated and thus no symptoms. However, his good condition helped in the long run- he made a great recovery and is back to doing all the things he loves. Best wishes to you- get cracking on the cardiologist and surgeon appointments!

 

[tprice54]

Better News

Better News

I had my stress echo today and the cardio was happy to see a much better heart function under stress that at total rest. Everthing I have learned here the last week helped immensly! Some things he told me today:
EF of 50% at rest, much better running. 2.0 cm. Now, last week these meant nothing to me, but thanks to everyone, I knew it was bad news, good news. Must be those years of runnig marathons helped somewhat!
Based on today's echo, he is putting off any AVR for now, monthly echos, beta blockers,espeically due to the large amount of calcifcation on the valve.
But I am back to running (I promised no marathons, but half marathons are okay!).
Thanks again everyone!

 

[Mary]

I think you misunderstood your cardiologist to say monthly echos. When someone is being followed very closely, they might schedule them for every six months--possibly three.
I'm glad the stress test showed that the stenosis isn't as severe as first thought. Just don't getting yourself dehydrated when you're running!
Best wishes,
Mary

 

[Karlynn]

I agree with Mary, you will want to double-check the "monthly echo" orders. We rarely see anyone pre-surgery having monthly echos because that would mean their heart/valve was in bad enough shape to need surgery, so why wait. I would also be concerned about physical activity if the doctor feels there's so much change going on that you need monthly echos.

 

[MikeHeim]

As a fellow runner, I have to tell you that I absolutely detest being on beta-blockers. I have been on them since my surgery and I think they have hindered my ability to resume high-intensity exercise. I never really monitored my HR during workouts before surgery (so I don't have a good baseline), but I now am frustrated that I can't get mine over 125 no matter how hard I work. Of course, it is also entirely possible that I'm just still in the recovery stage...

 

[epstns]

Hello "T"

Welcome to The Waiting Room -- the virtual room in which many of us await our own turns at valve surgery.

I'm another "almost middle aged" (58) jogger -- never was focused enough to try anything longer than 10K, but I've been doing that for 25+ years. At age 55 I was diagnosed with moderate to severe aortic stenosis, but even now my only "symptom" is gradual lessening of exercise tolerance. Over the last 5 to 8 years I've slowed from 7:30 miles to my present pace of about 9:30. No other symptoms. My cardio and I agree that I'll limit weight training to low weight/high reps, but no restrictions on jogging -- as long as it feels good.

I'm on a schedule of annual echo's and office consult in between, so really a 6 month review cycle. If all stays stable, I get to go another time around!

In my case, my valve area is pretty restricted (just over 1.0 sq cm) but all other cardiac measurements are within normal ranges. So we just keep on keeping on. My only prescription med is Avalide for hypertension.

All that said, I'd sure recommend that you keep up with all of the recommended exams and tests, and keep track of your own performance and how you feel when training. Bring all your notes to the cardio and discuss. If he won't talk, I'd fire him (been there, done it once already). A good cardio and relatively short follow-up cycles can keep you well abreast of your situation and still allow for a good quality of life in the present.

Again, welcome. Ask all the questions you can think of -- I'd bet the real-world answers are here, and the folks here are very willing to share their experiences.