New to the forum - activity/symptoms questions

[jordan]

Hi all. I am new to the forum and have some questions regarding symptoms of bicuspid aortic valve. A little about me first. I'm 32, male, and had my BAV diagnosed ~1.5 years ago. Before that, no one ever mentioned a murmur or other heart issues. I have high blood pressure and take lisinopril for that. At the beginning of 2009 I started running and since then I have done 7 5ks, 2 10ks, 2 half-marathons, 4 triathlons, 2 duathlons, 1 cycling time-trial, 4 cycling road races, and all the training in between. I am 70-75 lbs lighter than I was in 2009 when I turned 30.

A couple of months ago I had my second trans-thoracic echocardiogram, which prompted my cardiologist to order a trans-esophageal echocardiogram. The cardiologist that performed the TEE 1.5 weeks ago told my wife that I will probably need AVR surgery in 6-12 months. I'm seeing my regular cardiologist on Monday, but I was told by my PCP that the TEE had the same results as the other echo (moderate to severe regurgitation, but I don't know what that means in terms of my cardiologist's recommendation). I hope to get a clearer picture of my future surgery timeline in a couple of days.

Lots of background for a few questions! When I talk to my cardiologist, I find it hard to answer his questions about symptoms. When he asks about being short of breath, I'm not. Going up stairs, walking, or running 5 miles, I recover quickly and have no discomfort in breathing. I have noticed my resting heart rate has increased a smidgen (~5-10 bpm, but still in a normal range). However, I have seen a decrease in my power output and endurance compared to last year with similar training (I'm 100 miles less running this year than same time last, up 150 miles more cycling than last year, same weight and % body fat). Also, I feel like my HR increases faster when I run than before. I can reach 65% max HR quickly and have to really go slow (12 min/mile, I was at 7:45 min/mile this time last year) to keep it below 80-85% and that includes stopping to walk some.

I trust my cardiologist, which to me is very important, but I don't know if he has much experience with athletes. How do I relay my change in endurance in a way that he can understand that it is a dramatic change? Those with higher fitness levels, how were your symptoms manifested prior to surgery? Am I reading too much into into my change in endurance/pace since I don't have the "normal" symptoms related to my BAV?

I realize as I was writing this, the best thing to do is actually tell all these details in depth to my cardiologist, which I will do on Monday. However, I just wanted to see what other runners/cyclists experienced prior to surgery in terms of symptoms.

If anyone actually reads all the way through this, I would really appreciate comments and info. Thanks.

Jordan

 

[mainframe]

I'm not a runner/cyclist but prior to my first AVR I worked out everyday (45 mins cardio; 1 hour lifting). I was a 2001 Body for Life champion (7% body fat) and in Jan of 2002 was told to stop working out due the advanced aortic stenosis (measured at .8) I didn't feel any symptoms at all. I had my surgery 2 months later and the surgeon told me that the valve was closer to .4. I think the fact that you are in good shape is probably helping you feel symptom free. I'd tell them you don't have symptoms but also you hope to have surgery prior to risking permanent damage to your heart regardless of symptoms.

 

[tprice54]

Welcome! Maybe and I say maybe, your endurance is changing becuase of your valve, and maybe not. I can tell you my experience, and it may help.....
I was a runner/marathoner for many years. One day my GP heard a LOUD murmur, and sent me for tests. I found a cardio who at least was a runner (after a few failed attempts at cardios) and could understand me. The cardio did limit my races to half marathons, and nothing with big hills. His advice was, I would be able to tell him when it was time for surgery. Sure enough, after running a half marathon in September, by Thanksgiving I could not run a mile. It was that quick, literally within a week I could feel the difference. Surgery was scheduled within the month.
It does depend on how quick your valve fails. I would say between regular tests, visits with your cardio, and training, you are in a good position to tell when you start to fail (a few runs where you feel like crap during and after is a sign!).....good luck!

 

[JimL]

Welcome, Jordan. When your valve starts to go bad, it can happen very quickly. Be sure to share all this with the card, yes, but be regular with your appointments too. My surgery was almost delayed long enough that it was no longer necessary.

 

[SumoRunner]

Like Tom says, you will know it when you get there. It's one of the central points of my own story. My cardiologist told me in 1980 that I'd know before he did. Also, the changes are NOT gradual, the condition of the valve worsens in steps. You'll feel no change for several years, then suddenly there's something different. I had electro-cardiograms and ultra sounds for decades and there would be no change for 4 or 5 years in a row, then a sudden change and again nothing different for 4-5 years again. When it's time for the valve, there will be no doubt.

 

[Mentu]

Jordan, welcome to VR. Our Doctors are often focused on the classic symptoms of severe valve disease. It is important to share with them that as an athelete you are much more conscious of your physical performance and that you are seeing real changes now that you did not expect. You should take Jack's advise to heart. Valve disease does cause some gradual decline but when it makes that transition from moderate to severe the changes can come much more quickly. This is an indicator that something needs to be done at once and it is better for you if you can avoid letting it get that far. Your experience of surgery and recovery will be far better if you have surgery while you are still otherwise in excellent health.

Larry

 

[AgilityDog]

Jordan,
I run dog agility (duh, no kidding). Before my first surgery (mitral valve replacement, maze and pacemaker), I went from running a full course of 21 obstacles and outrunning my (slow) dog, to not being able to run 11 obstacles, to not being able to run 6 obstacles. Or speak a full sentence without gasping for air.

After my first surgery, I got back up to speed with my younger, fast dog, though given the damage done before I was initially diagnosed, I'm not where I was before it all started. Sometimes I couldn't complete a course, but not often.

I've never been a real athlete, but it's not all that hard for a "normal" 40 or 50 something person to run a 175 yard obstacle course in 50 to 70 seconds.

When my Aortic valve started to go bad, I was fine for all activities except dog agility. I got to where running more than 10 obstacles with the fast dog was very difficult although I had no other symptoms. Then I started feeling some very tiny mild chest discomfort on my daily noontime 1 mile walk. I happened to have a 6 month check up with my cardio and he said Yep, time for that AVR. Now, after AVR, I'm better than I was after the MVR. Mostly I can keep up with Jet (aka Speedy Gonzales), though I have to minimize my talking to her during a run 'cause there's not air for both running and hollering at her speed.

My cardio knows all about my agility, and we use it to measure how I'm doing. If you are noticing a distinct difference in what you are able to do now versus what you could do a year ago or 6 months ago, I'd say it's time to at minimum start interviewing surgeons, and perhaps you should suggest that to your cardio.

From what I've heard, the symptoms for AV problems can be much more subtle than the symptoms for MV problems (which tends to cause more lung congestion, coughing, and shortness of breath, while AV issues tend to be more fatigue and general exercise intolerance). I found that to be true in my personal experience. I had my recent AVR when my symptoms were pretty much mild. The trigger was my performance plus a drop in Ejection Fraction. Gee, those things go together, don't they???? My second recovery was much quicker than the first, because I was healthier. I only wish my Mitral valve problem had been discovered sooner, and we could have avoided the collateral damage that eventually required my AVR!

 

[epstns]

Jordan - I'm another runner who had a bicuspid aortic valve, although mine was stenotic (didn't open all the way) rather than insufficient (doesn't close all the way) like yours. Also, I'm just a bit older (63 now). My cardio also told me that I would be the one to tell him when it was time for surgery, that he wouldn't need to tell me. I went from 7:30 miles to 9:30 over 2 or 3 years. Then within one year I went from 9:30 do just barely making 15:00, and not being able to complete a 5K without walking part of it. That's about when I called "time" and asked my cardio for referrals to surgeons. Over all, from diagnosis to surgery, I waited over 9 years - most of them quite symptom-free, with very good quality of life. I would say that the last year wasn't so great, though.

I am now about 15 weeks post-op and have started cardio rehab. From being in relatively good shape (age adjusted, of course) prior to surgery, I have become the "ringer" in rehab. I'm able to start where some of the others can only hope to end up. I think I will be able to regain most, if not all, of my previous conditioning. We are the lucky ones. The folks who have heart attacks often have heart damage that comes as a total surprise. We have been warned and can watch the condition of our hearts and have repairs performed before any damage is done.

You are right to seek a cardio who understands your wants and needs. When I was "cardio shopping" I looked at the web sites of the local cardio's and found one whose practice included a specialty in heart disease among younger patients. We had a great doctor-patient relationship for several years until he moved to an office too far away for me. As he knew me quite well by then, he was able to refer me to one of his associates who also has patients who are not the stereotypical wheelchair and oxygen tank patients. We regularly discuss and debate my course of treatment in a very animated way. With the knowledge I have gained from being here I have had doctors ask me "Are you an MD?" All you need to do is to find a cardio who not only appreciates the fact that you have taken the time to learn all you can about your condition, but also one who will tailor the treatment plan to support your life plans.

If you were in the Chicago area I could offer some cardio's names. It doesn't look like you're in my neighborhood, though. Maybe someone else can help.

In the meantime, welcome to The Waiting Room - the virtual room where many folks await their own turns at valve surgery. Make yourself comfortable, visit often and ask lots of questions. The people here not only have a wealth of real first-hand experience but they are also very willing to share their experiences with new members.

 

[nate_c]

I don't mean to disagree with the advice you've been given, but I thought I'd share my experience. I seems I don't align well with some of the others' experiences. I'm also in my 30s and had my AVR in Aug of 2010. In the first half of 2010, I was running at least 50 miles a week, sometimes much more, and I felt my training was progressing very nicely. I'd known about my valve issue since I was a kid, and I'd been having routine, 6 month echos for years. In June of 2010, I went in for what I thought would be just another echo. I was in the best running shape I'd ever been in, and I had no symptoms at all. I felt great. Unfortunately, the echo report that month showed that my leakage had progressed from moderate (which it had been for years) to severe. My cardio was very concerned and recommended surgery as soon as possible. I spoke with other doctors, who seconded that notion. Because I had been training so well with no symptoms, my surgeon and doctor both, with some serious arm twisting, agreed that I could run one last half-marathon before surgery, so long as I took it easy and didn't try to "be a hero." (I'd been running 20+ miles every other weekend with no trouble). I ran the race easily, only turning up the effort a little at the end (couldn't help myself). My time was still good enough to finish in the top 10% of my age group. Maybe, like some of the others here, I would have crashed hard in another week or two. I just don't know. I was just telling another valver on here the other day that I really felt I could have cut out of the OR on the day of my surgery and instead run a PR marathon. So, in my case at least, I had to trust my doctors, not my symptoms. I would suggest, however, that you get a second and third opinion if you haven't already. I know that process really helped me peace of mind and confidence that I was doing the right thing, even though I had no other evidence to confirm it.

Good LUck!!

 

[enkaynj]

Steve,
What exactly is cardio rehab ? Does everyone need to go through it after surgery ? I did not hear my cardio or surgeon mention it at all (yet).
Thanks

 

[epstns]

Cardio rehab seems to be optional - some doc's require it, some make it optional and others never even mention it. The rehab unit I go to works to get your cardio efficiency back to where it should be. The "should be" is adjusted for each patient's condition, age and lifestyle. Many of the patients are older and just need rehab to be able to walk from the car to the store, some even using oxygen tanks on the treadmills. The center has treadmills, stationary bikes, free weights, eliptical machines -- most of the stuff your favorite fitness center would have. The difference is that each session is supervised closely and you are connected to a heart monitor all the time. They tell us which machines to use, what intensity to start at and at various intervals through our session (on a particular machine) they will tell us either to keep the same pace or speed it up. My usual session is 20 minutes on a stationary bike, 20 minutes on a treadmill and 10 minutes of weight training. It may not sound like much, but at the intensity they require, it feels like a good workout - and I've been going to the gym regularly for years.

In my case, my cardio asked if I wanted to do rehab, and he was quite pleased when I said yes. I wanted the supervised work-out time to help me to know where my new limits are and also to have the supervision while I'm ramping things up during recovery. I do rehab 3 days a week and go to my other fitness center the other 2 days, doing a similar routine to whatever level I just did at rehab. They say that at the halfway point of the 12-week rehab term they will meet with each patient to discuss what they should be doing on the 2 days when rehab doesn't meet. They are in for (another) surprise with me. . .

 

[SumoRunner]

Well, it was a long time ago and I do recall seeing a brochure for rehab, but my cardio downplayed it saying with my habits it would probably be unnecessary, so I never bothered even looking into it.

 

[bdryer]

Hey jorden

I've been a TRI guy since 1981. I will not go on about my life time involvement in sports [even at the world class level] cause it don't mean sh_t. What does matter is you staying involved in your sports and participating right up to your surgery date.

Listen to your body, no intervals, no personal bests, no keeping up with the pack unless, you are bringing up the rear drafting. [You will owe coffee or beer for the free ride]. By all means wt lift, but make certain you are not grunting and cheating. Light med wts with perfect technique stopping well before failure. On hills, do not push it! Enjoy the freedom of being in motion.

You must protect your LH ventricle and aorta from secondary damage as a result of being "the man". The LH ventricle will hypertrophy and the Px will > as your AV narrows, you can damage the nerves and end up with a bundle branch block [like me] or pace maker. You jack up the intensity, a fire hose high velocity jet of blood through the narrowed AV will cause an aneurism of the ascending aorta [like me] or damage the aortic root. Now you get a graft to correct the aneurism [like me].

Your goal is to stay active, enjoy your sports and protect your heart from further damage by going hard. Know this, the AV will continue to calcify and narrow. Work with the disease until you get into the shop for repair. Your present intensity will have to decline up to surgery as the AV stiffens and narrows. Learn quickly to listen to your body and follow suit with your sports.

Best of luck! Hey what do want as a replacement valve? Tons of choices. Have fun with it, treat like shopping for a new bike!

 

[Greg a]

Hello Jordan , WELCOME TO THE FAMILY

 

[pnarciso]

Jordan,

I was not at your fitness level, but I also knew since I was 14 that I had a BAV, never had a symptom; I was always told to stay away from "competitive level" sports, but I ran up to half-marathons, used to swim regularly (up to 2K), and always felt great (although with a higher than usual HR during sport activities). I knew the surgery would come "some day". In the beginning of 2011 (age 37), in my yearly routine check-up with my cardio he said I should "start shopping for a surgeon". I went to see 2 surgeons and one more clinic cardio, and they all told me I would have no benefits from waiting, my heart was starting to suffer some damage from the valve lesions, and so I scheduled the surgery for June 1st. I am 20 days post op today, feeling definitely worse than before surgery, but recovering very well.

Conclusion: I do not think waiting for the symptoms would be the smartest thing to do. I also developed an aneurysm (like bdryer), which had to be corrected during surgery. My surgeon said that if I had waited longer it would be a much more complicated surgery than it was (and mine took 7h40 from the time I entered the OR until when I checked in the ICU), since fitting the graft to a wider aorta is "not as easy and results are not as good".

Make sure you have more than one opinion, do not stick to a single doc on when to go through surgery. I hope your recovery will be as good as mine (sleeping was the only issue, but even that went away 2 days ago - I am sleeping much better now). If you do not have a choice (operate or not), make sure you do it while you are fit, healthy, and before your heart and aorta have suffered permanent damage. Well, that is my opinion, at least.

Good luck!

 

[jordan]

Thanks to everyone who has shared their story. As I'm sure you all know, the more I hear from people that have had the surgery, the more comforted I am that I need it soon.

So, my cardio said today that he concurred with the cardio who did my TEE: that I would need the surgery in about 6 months. He almost made it sound like 6 months was his maximum suggestion. I do have some dilation of the left ventricle, as well as the wall is thickening. Even though I don't have physical symptoms that I can describe, I do have symptoms in the structure of my heart.

I'm scheduled to do a treadmill exercise test next week and I think those results will kind of solidify my cardio's recommendation for surgery.

 

[Greg a]

Thanks to everyone who has shared their story. As I'm sure you all know, the more I hear from people that have had the surgery, the more comforted I am that I need it soon.

So, my cardio said today that he concurred with the cardio who did my TEE: that I would need the surgery in about 6 months. He almost made it sound like 6 months was his maximum suggestion. I do have some dilation of the left ventricle, as well as the wall is thickening. Even though I don't have physical symptoms that I can describe, I do have symptoms in the structure of my heart.

I'm scheduled to do a treadmill exercise test next week and I think those results will kind of solidify my cardio's recommendation for surgery.

That will be the benchmark stress test that future numbers may be measured by

enkaynj the stress test aids in establishing parameters for working out and in the rehab I went to I was given an entrance stress test (post surgical) and an exit stress test ....the rehab was a series of 20minute stations from recumant cycles to rowing machines to stair master type units to treadmills to spinning or upright sationary cycles to five different nautalis type weight machines to regular treadmills the whole time monitored by RN's and PTs and consultations by nutritionists all administered by a cardiologist


.

 

[bdryer]

jordan

What the hell is a stress going to prove, show or determine other then your an in shape person with heart disease. My advice, DECLINE THE STRESS TEST!!!!!!!!

Listen up, I had "NO SYMPTOMS" of bicuspid valve disease, aneurism of the ascending aorta or bundle branch block, that is until AFTER the stress test. This stress test injured me. I am not a wimp and have an exceptional pain tolerance, when I say I'm injured, believe me, I'm in sad shape. You MUST avoid pushing to the max! You have already been diagnosed with thickening of the heart and a diseased bicuspid AV. If they want to confirm the extent of your heart disease do an echocardiogram.

I don't get it. They tell us to be cool with athletics then turn around and thow us on the treadmill from hell, creating the greatest potential to cause further damage. "Oh but we are monitored". The Shuttle Challenger blew up on launch, but I guess thats OK cause it was "monitored". Ditto for our tickers. Protect your heart, be active but be smart!

 

[spartangator]

Hi Jordan,
I just want to add another story to the group that was asymptomatic prior to surgery (at the age of 31). My aortic valve was always something to monitor but never produced symptoms until a TEE/echo when the cardiologist said, "Six months max," much like your situation.

My cardiologist suggested going by the test measurements instead of my lack of symptoms in order to protect the healthy parts of the heart muscle so that the thickening and other issues couldn't damage anything else.

It sounds like you're being pro-active with your care and learning all you can, which I think everyone here would agree is the best thing you can do for yourself right now. Gather the best medical advice available to you so your decision is as informed as possible, understanding that some of the time you'll need to accept information that isn't what you want to hear (as in, don't just seek out physicians that tell you what you'd prefer as opposed to what's medically wisest).

Welcome to VR.com. As you've noticed already, this is a special, supportive group always happy to help.

 

[ottagal]

jordan

What the hell is a stress going to prove, show or determine other then your an in shape person with heart disease. My advice, DECLINE THE STRESS TEST!!!!!!!!

Listen up, I had "NO SYMPTOMS" of bicuspid valve disease, aneurism of the ascending aorta or bundle branch block, that is until AFTER the stress test. This stress test injured me. I am not a wimp and have an exceptional pain tolerance, when I say I'm injured, believe me, I'm in sad shape. You MUST avoid pushing to the max! You have already been diagnosed with thickening of the heart and a diseased bicuspid AV. If they want to confirm the extent of your heart disease do an echocardiogram.

I don't get it. They tell us to be cool with athletics then turn around and thow us on the treadmill from hell, creating the greatest potential to cause further damage. "Oh but we are monitored". The Shuttle Challenger blew up on launch, but I guess thats OK cause it was "monitored". Ditto for our tickers. Protect your heart, be active but be smart!

Bdryer,
The following information may clarify why the cardiologist is recommending a stress test for Jordan.

(http://emedicine.medscape.com/article/150638-workup#aw2aab6b5b5Exercise Stress Testing)
Exercise stress testing is contraindicated in symptomatic patients with severe aortic stenosis, but it may be considered in asymptomatic patients with severe aortic stenosis. The ACC/AHA 2006 valvular heart disease guidelines state that exercise testing may be considered in asymptomatic patients (class IIb recommendation), and recommend that exercise testing not be performed in symptomatic patients with aortic stenosis without specifying severity (class III).[9] In asymptomatic patients, stress testing has been shown to be a low-risk procedure when it is performed under strict surveillance.[10] Closely monitored exercise stress testing may be of value to assess exercise capacity in asymptomatic patients. Abnormal results may prove greater disability than the patient would admit. In addition to watching for symptoms on the treadmill, one should also look for hemodynamic abnormalities, such as blood pressure decreases or failure to increase blood pressure normally, which can occur in the absence of symptoms. In this setting, the test is not used to screen for coronary disease.

Provocative stress testing is used in cases when the severity of the aortic stenosis is uncertain because of a small stroke volume and a small mean aortic valve gradient (low-gradient aortic stenosis). Infusion of an inotropic agent such as dobutamine, which results in an increase in stroke volume and heart rate, is usually helpful in establishing the correct diagnosis. Cardiac output and LV and aortic pressures are measured simultaneously and AVA is calculated before and during dobutamine infusion.

In patients with an initially low-pressure gradient but severe aortic stenosis, the measured AVA does not change with an intravenous dobutamine infusion, but the mean-pressure gradient increases significantly. In contrast, in patients who have a low cardiac output due to concomitant myocardial dysfunction rather than due to severe aortic stenosis alone, a small increase in the measured AVA and the aortic valve gradient usually occurs with dobutamine infusion. PreviousNext Section: Echocardiography