Congenital defects and Training

[purdy65]

Something I don't really ever talk about, it the fact that I have a (supposedly) very benign congential heart defect known as a bicuspid aortic valve (think of a slit in you aortic valve as opposed to a peace sign - three flap valve).

I have been followed by a cardiologist for this for nearly 20 years, and have been COMPLETELY asymptomatic.

Here's my problem. I read too much! After googling BAV and exercise I get mostly the idea that unless your cardio tells you, or there are symptoms - then have at it.

My problem is that two things are going on. I'm getting older, and adding mileage since my last cardio visit. My doctors have all been supportive of my running, but I have to admit, that I'm not sure I have always conveyed the idea that I'm not talking jogging at an easy pace a few times a week, that I'm talking about marathons and marathon training.

I know heavy weights are restricted for me as it is more the sudden flow of blood caused by such activity can cause an increase in hardening of the aortic valve, and back flow through the defective valve. The last time I went the Cardio did say that I had mild-moderate amounts of each of these, but not enough to restrict activity or cause symptoms,but much worse, and we were looking at restrictions.

I get nervous though, because I'm getting older, and feel like I need to be followed more than they tell me I need to be followed (echo/ekg/chest x-ray every 2-3 years), and I don't want to wind up one of the statisics of marathoners keeled over on the side of the road. Every time I hear one of these stories, I cringe!

I hate the idea of giving it up though!

For now, I feel so good that there is no reason for me not to continue, but I feel like insisting on being followed more than they say, is wasting resources (it's a full day of tests and examinations), when it's not really necessary.

Also I can't find anywhere the effects this may have on my performance!

I'm just sort of throwing this out there to see if anyone else has similar stories or concerns about their training.

I know I ultimately have to rely on the advice of my DR, and I will.

Thanks for listening!

Lisa (must stop googling medical info!)

[scrumhalfgirl]

No advice, Lisa, but it sounds like you are handling this well by being upfront with your medical team. Now step away from Doctor Google!

[MichaelMc]

Hi Lisa,

Hopefully someone with a stronger medical background will contribute, but here is my two cents.

You have a known potentially serious medical condition. You are doing an activity which MIGHT cause it to become critical and this is concerning you. It only seems sensible to go to a doctor and FULLY explain what you are doing and insist on understanding the implications. This way you can make your decision on how to proceed with the maximum possible knowledge, and keep your doctor informed of what you are doing.

Going around keeping yourself and the medical professionals "in the dark" because you fear that more knowledge will "force" you to make decisions you don't want to make is unwise and counterproductive. Normal and common, but unwise. You will still be in control once you are as well informed as possible. Even if the truth is scary or unpleasant, at least it is open and you can deal with it: more often reality is not as bad as we fear and we can do what we want with much less background stress.

I cannot stress enough that our medical system CAN work well, but it really takes an involved participant: insist on understanding the condition. If your doctor won't take the time to either explain or at least direct you to the information you need, find another doctor (as much of a PITA as that is). YOU are responsible for your health. Your health is worth whatever time and money it takes to maintain it; if you doubt that, think of all the others in your life who will suffer if your health does.

[a-slow-5]

Can't help but agree with Jesse.

Sounds like you are well informed by your medical team about your condition. Leave it that way. As long as you are as "up front" with them about your "activities" as they seem to be about your "condition" it appears you could/will have a balanced and active lifestyle. Nothing speaks louder than the words "listen to your body" for any average runner. These words may be a little more important for you but they still ring true.

What would Spencer say?

[garth]

I get nervous though, because I'm getting older, and feel like I need to be followed more than they tell me I need to be followed (echo/ekg/chest x-ray every 2-3 years), and I don't want to wind up one of the statisics of marathoners keeled over on the side of the road. Every time I hear one of these stories, I cringe!

I hate the idea of giving it up though!

Any one of us can be one of those stats on any given day. Be upfront with your med team, tell them because you are doing this (training for marathons etc) that you want to have more frequent testing and let it run from there.

I have a yearly full blood work up echo, ekg, and stress test. I keep my Dr up to date with my exercise plan and bring a full list of medications and supplements to her every year. I am up front with her and I expect her to be upfront with me. If she ever tells me to slow down or quit....I will face that when it comes. Until if i end up keeled over ont he side of the road i will end up keeled over doing something that i wanted to do.

[purdy65]

I definitely need to be more upfront with the Doctor. I think the real reason I haven't been is that the past year since I saw her last was the point in time where I have been increasing milage and intensity, and so long as I heard it was OK to run - that was all I needed to hear.

I think I will try to get in a year early (next spring) and have a more involved discussion about it.

Good news is, I continue to be completely asymptomatic, and feel great, but as I said - I am not getting any younger.

I'm actually more interested in the weight lifting issue as I've started to do alot more of this since I've joined the gym. I never lift really heavy weights though, and it seems like this is the real culprit. Also sports with lots of starts and stops like Tennis, Soccer and so on. Those aren't really me anyway.

Thanks!

Lisa

[b_squared]

I'd second the notion written by MichaelMc above that you should be completely honest with your doctors. If your google searches match my google searches then you are aware of the potential problems associated with BAV, which your doctors will monitor. However, here is an angle that you may not have considered: endurance training will induce many electrical and muscular changes in the heart, the most obvious of which is lower resting heart rate. There are many other changes which may show up in cardio examinations that are physiological adaptations seen in distance athletes that could be considered abnormal for a typical population. Since you have an underlying problem, you would want your med team to be aware of your training so that if they see any cardio 'abnormalities' upon exam one explanation could be your training, rather than attributing abnormalities to BAV. In others words, you'd want the med team to have your whole medical history so they can assess your case properly.
Best wishes

[Kristen]

Lisa, kudos to you for doing what you do and for sharing this with us here. I fully support you in being upfront with your doctor with regard to your running, weight lifting, and any other forms of physical activity. Now, we fully expect you to report back and let us know that your doctor has been fully apprised, and that you have the green light.

[drghfx]

I think I will try to get in a year early (next spring) and have a more involved discussion about it.

Why wait? Book a time with your Dr. now and have that discussion.

[Hammie]

I would say that you should see your specialist sooner (but not urgently, obviously) and tell them when you book that you want the appt to talk about exercise (running and weights) and monitoring. That lets them book the right length appt, and be prepared for your questions. I'd agree - be as honest as possible, because no-one can give advice with only part of the information. And, if you get advice you don't want to hear, don't be afraid to ask questions as to why you're getting that advice.

Good luck!

[BaldGuy]

Hi Lisa,

I have a Bicuspid Aortic Valve as well. My cardiologist seems quite proud to show off my marathoning heart muscle to his residents and clinical fellows (although, the first time I told him I was marathon training, his repsonse was, "That's nice."

How often do you see your cardiologist? (sorry, I just re-read your post, so don't answer that) ... I think I'm on the once-a-year plan now. Every year he tells me the same thing: you're living with a leaky valve, one day it will have to be replaced (in 20 years or more), keep doing what you're doing, etc. I get an annual EKG and Echo, and then he plays stump-the-intern while they try to diagnose me by exam.

Be open with your cardiologist and keep enjoy your healthy lifestyle. And I'll take my own advice and do the same.

Feel free to PM me any time. RUNNERS-Living-with-BAV UNITE!
Cheers,

BG

[purdy65]

Hi Lisa,

I have a Bicuspid Aortic Valve as well. My cardiologist seems quite proud to show off my marathoning heart muscle to his residents and clinical fellows (although, the first time I told him I was marathon training, his repsonse was, "That's nice."

How often do you see your cardiologist? (sorry, I just re-read your post, so don't answer that) ... I think I'm on the once-a-year plan now. Every year he tells me the same thing: you're living with a leaky valve, one day it will have to be replaced (in 20 years or more), keep doing what you're doing, etc. I get an annual EKG and Echo, and then he plays stump-the-intern while they try to diagnose me by exam.

Be open with your cardiologist and keep enjoy your healthy lifestyle. And I'll take my own advice and do the same.

Feel free to PM me any time. RUNNERS-Living-with-BAV UNITE!
Cheers,

BG

Hey BG thanks for posting!

I was wondering if there would be anyone else out there with a similar story.

I have been going every 2-3 years, but I think the annual thing will start soon. I am going to make an early appointment this time, but I'll have to see if the illustrious OHIP will cover the tests more than that. I know my Dr can order them but may have to have a reason.

Oh and I LOVE stump the Intern! You know when I am seen by a resident/intern, I learn so much! Last time the resident was also a runner, so he was pretty keen!

I'll keep you in mind if any issues come up!

Thanks.

Lisa

[Habs4ever]

Lisa,

I just saw this thread....
I have no advice.
Take care of yourself, 'cause us old ladies need to keep running.