what would you do??

[Jas0n]

i've posted here sporadically over the last few months, mostly when im looking for advice. i have to say this place is a great resource and as i develop more of my own experiences, i hope to actaully contribute something !! im a 22 year old (former) semi-pro cyclist; i raced mountain at the semi-pro level before my recent transition to the road. after being incorrectly diagnosed with exercise induced asthma, i was found to have moderate regur. of my BAV with a mild expansion (thickness) of my heart tissue. based on different opinions from different doctors, i have stopped riding entirely (i still rock climb, but i dont train aerobically at all) and since august and i havent even been on a bike!! indeed, i sold my all but one of my race bikes because the temptation is just too great; since then i have bought a new sports car, so its not soooo bad, but still .... however after more than six months of no riding, there appears to be no difference in my condition (according to an echo). that is, no improvemnet but also no deterioration. i was originally told - by my cardiologist - that i could continue riding, but that i would need to restrict my heart rate to a certain ceiling of 175bpm (doesnt sound so bad to most). i tried to do so, but it would mean riding at a recreational level without any group rides; i dont have the self control to just sit in on a ride, esp. when i know everyone on the ride and they expect me to be the catalyst. on the last ride i did, i tried my hardest not to push it, but i couldn't help by contest the sprint (i took it down - i had to - it was my last ride!!). heres the issue: during an average ride, i spend nearly all my time above 175bpm and on hard rides, i will spend long periods above 190 with a max observed heart rate of 218bpm. the issue seems to revolve around the fact that at 175bpm, my blood pressure decreases, leading to blurry vision/seeing "stars" (we confirmed this from a stress test, which i finished with only a heart rate of 205bpm!!). i pressume the fear is that i could, hypothetically, pass out while riding (which would be devasting in terms of crashing and the harm that would come crashing at such speeds). would the negative effects of being "out of shape" (for me at least) outweigh the possibility of such an event?? am i actually doing harm by training at such a level?? am i making my condition worse?? that is, has cycling contributed to the thickening of my heart tissue (i forget exactly what this is technically called, stenosis??). unfortunately, i havent gotten a straight answer from my docs, and i dont want to wait until my next tests to worry about this; i dont want this to season to be a waste if it doesnt have to (i already forfeited all my base training for the year and im sure i will suffer on group rides this summer because of it)!! its 2 a.m and instead of sleeping, im worrying about the warming weather and my lost sport!! at this point, i would love to find a cardiologist who has experience dealing with endurance atheletes, and if possible, young athelets. i live in new york, so i dont presume this should be too difficult. i have the rest of my life to live and i love cycling too much to give it up; the last six months has been torture. i live and breath cycling. where do i start? could anyone here make a referall?? thanks for reading my book. end of my rant.

thanks again. jason

 

[hensylee]

mornin, Jason. Sorry you are not sleeping because of worry. I know the feeling as many here in VR do. We have bikers such as you as well as other athletes in other fields and I know they will be along to give you some opinions and maybe some answers.

 

[chrisgreen500]

Hi Jason,

I am very sorry to hear of your predicament. I was forced to stop playing rugby 8 years ago when I was diagnosed with mild/moderate regurgitation of the aortic valve.

Since then I have had conflicting advice. I was initially allowed to take part in a half marathon, but was subsequently told to avoid anaerobic exercise, and told not to do half marathons. Like you, withdrawing from what you know and love was an extremely difficult thing, and still frustrates me to this day.

The advice I received was that the increased blood pressure on the valve could increase the deterioration. Although I am not sure what kind of risks I put myself under when I do occasionally push my rate > 150.

I was of the understanding that regurgitation is not something that improves with time. It is only something that can get worse. I may be wrong about this, as all cases are individual, and I have no medical qualifications.

I have myself been trying to find out the risks I run with different forms of exercise, so any information you have would be gratefully received.

I wish I had something more positive to share with you.

Regards
Chris

 

[mntbiker]

Hi Jas0n,
Good to see you again.

Let me preface my statements by saying I am in no way a medical person, I am simply one of the fotunate few to have the gift of a BAV. I have also been accused many times of taking excessive risks. With that in mind.


I found out I had a BAV back in '91 at the ripe old age of 23. (had to go look that up after another thread talking about how long you have known)

It was diagnosed as moderate regurg at the time, it is now severe. None of the cardioligists I have seen over the years have imposed any restrictions. That includes three in NY and three in GA. Over the years I have been involved in riding, road and mountain, running - trail, martial arts - including teaching and several other things. Although I have noticied a decline in my overall ability I still push myself rather hard. I run my heart rate up into the 170's on a regular basis and yes even into the 200's (not sure if that is completely by choice). I have one ride I do every week that I am running the 180's for most of the trail, about 1 1/2 hours. I do feel like I am going to pass out at times and get the whole tunnel vision thing going on, I usually slow down until it passes and push it back up.

Stenosis and aneurysms are a very different matter. They have a much greater potential of causing a sudden cardiac event then regurg.

The way I look at it - if the condition is serious enough that you are going to impose restrictions, to conserve heart function at the expense of my overall health, then a more aggressive treatment needs to be considered.

I don't advise my course for anyone else, there are potentially negative repercussions.

I now have the severely regurgitant BAV, ascending aortic aneurysm (we'll call it 4.8cm until I get the CT results back), moderately regurgitant mitral valve, left ventricular hypertrophy and pulmonary hypertension. Is all of this due to my exercise, in spite of my exercise or better then it would be because of my exercise? I really don't know.

The point is, you need to make the decision with information from your doctor about how far you are willing to push it. The doctor can restrict anything they want, if you don't listen it doesn't do any good.

Good luck.

 

[chrisgreen500]

Hi biker,

I saw in another thread that you are a martial artist. Are you still doing that? I train in Wado Ryu karate, and have this last weekend reached 3rd Kyu. It is my replacement for rugby.

Have you ever discussed restrictions on exercise with your cardiologist? Did they mention any of the risks? I am interested that you say regurg doesn't present the risks during exercise that other conditions do. I guess it just knackers you out quicker (at least that is what it does to me).


Regards
Chris

 

[DLH]

Jason,

I have always been very active and also love cycling. I used to race when I was younger and may try again in the older classifications now that I am 41 (if I can train enough). Anyways my opinion is that each person is different and needs to decide how badly they want or how driven they are to do what they enjoy. I am a person who likes to push myself, compete and not just suck wheel in a group ride. I have had several inuries or problems that could have limited or sidelined me, but I looked and pursued for a fix that would let me get back to doing what I enjoyed at a level I enjoyed doing it. Of course this meant surgery on a shoulder, knee, heart and other diagnostic procedures for a muscle disorder. After all of these things I feel fine and I am still very active riding, playing softball and any other activity with no limitations. Some people including my wife do not understand why I still am so competitive and just do not give it up my activities. I can't really explain it to them it is just in me. But, if you are like me you know what I am talking about. I do not know much about BAV since mine was mitral valve, but if there is a fix that will allow you to return to what you enjoy, then you may have to pursue it. Some doctors would rather wait till things get much worse others are more proactive and want to fix it before it can cause other cardiac damage. I prefer the proactive approach if it is confirmed that there is a problem. Bottom line is you may have to have a serious talk with your dotor to discuss your options and maybe even seek a second opinion.

Good Luck,

 

[DLH]

Jason,

I forgot to add that when I was looking for a surgeon I was considering going to Stephen Colvin at NYU Medical Center. He is supposed to be one of the best from what I researched. Unfortunately I had to deal with my HMO insurance. Here is a link:

http://www.med.nyu.edu/cvsurgery/en/team/colvin.html

 

[Karlynn]

The way I look at it - if the condition is serious enough that you are going to impose restrictions, to conserve heart function at the expense of my overall health, then a more aggressive treatment needs to be considered.

I would agree with this. Many doctors like to wait as long as possible for surgery, placing restrictions on activity that can be very difficult for an active person to live with. The regretable thing is that the doctors don't have to live with the restrictions themselves so many do not understand how it can be more life altering than justing going ahead and getting something fixed.

The unfortunate caviat for you is that at 22, with your active life, a tissue valve would not last very long. But with the type of cycling you do, a tissue valve would probably be the type you should choose. (I'm assuming you can have some pretty serious accidents from time to time and Coumadin would be a problem) You may want to do some research to see if you would be a candidate for the Ross Procedure and if that would work for your active life.

 

[Marguerite53]

Hello! We have so many incredible athletes on this site, it is wonderful. I, however, am not one of them. 52, housewife, mother of 3 grown and in college (son 23, son 21, daughter 18). Greatest workout I get is with my egg whisk. Ok. So I'm obviously not going to address your specific questions.

And maybe it's the mother in me, but here goes. You do not have a good enough understanding of your condition. We can help you here, to better understand things. If you share some of your echo numbers with us, we're great at deciphering that stuff. (and stenosis is a disease, a stiffening of the malformed valve which causes declining malfunction and blood restriction)

But, we cannot give you appropriate advice for what you are asking. You need to find a doctor who can explain you to you and who will help you make decisions that you can live and thrive with. SO. Do you have a general practitioner, internist or cardiologist whom you like and trust?? Or. Do your parents have such a doctor? Long trusted, up to date, etc.. Here's my advice. Make an appointment for a consultation. Nothing is wrong today (receptionists are so nosey) but since you have a heart condition and you are miserable having given up your bicycling, you need to get some expert advice on how to properly manage your condition. If they balk at giving you an appointment, don't let them. Just tell them to make something up, then, you want 20 minutes with your doctor. Then. Make up a list of questions. AND make up a list of answers that you expect to get. My doctors have a way of throwing me a curve and then I get home and am unsettled about what they have said. Don't leave the doctor's office until you are satisfied with the time he/she has given you.

Why do I recommend this? I was suddenly faced with 3 somewhat conflicting choices last december. I needed AVR, a colonoscopy and a breast biopsy. I could not get a handle on how to schedule everything out.....too much at once (and my cardio is one of those wait until the last minute kinds and my valve was truly closing in on me). My husband said, call that doctor you love so much (my sweet, young internist). Just go in and listen to her advice. It was great. It was all I needed. She partnered with me on my concerns and showed me the way! She gave me lingo to use with my cardio to get some clearer answers (doctors do have their own language) and it's all working out fabulously.

You need someone who knows you, or who is willing to get to know you and assist you in devising a good plan until the time you will need a repair or a replacement (hopefully never!). We hear this crazy news about our condition and we may jump to conclusions. Or, some of us (and they will tell you that I am a complete nag about getting them out of the river!) go into denial (...the river....de nile... ). This is not fun stuff. Trying to get your arms around all the information is daunting.

If, for some reason, you do not want to visit with a doctor personally, you can quite easily establish a good relationship with one of your cardiologists skilled nurses. Just call the cardio's office, say you have some questions and to have a nurse call you. Again. Some offices try to manage you and it is very annoying. Nurses are wonderful. Many are far more helpful than the doctor because they just seem to be more human, somehow! If they put you through to a voicemail for the nurse, just be general in your wishes at first, until she has called you back. Try to catch her name, if she turns out to be helpful. Then, the next time you have a question, ask specifically for that nurse. They usually go directly to the cardio for their answers, so it's practically the same as facing the cardio directly, but of course, there is NO cost to you whatsoever.

I am way too wordy. I want to see you back on those bikes. I think you just need a better understanding and someone professional to help you decide your best route. Good luck!! Let us know what you do!

Marguerite

 

[Jas0n]

i completely agree that i need a better understand of whats going on with my body. i think it ridiculous that i have such broad questions and instead of having my cardiologist answer them, i have to turn to people who have been in the same predicament i am in. i dont have the results of my echo, but i do have the print out from my cardiac mri. i'll share the measurments that are in red (i believe red indicates a value greater than the normal range) as well as the normal range they provided:

The Impression:
Bicuspid aortic valve with fusion of the right and left leaflets.
Mild aortic insufficiency with a regurgitation fraction of 10-15%.
Mild enlargment of the ascending aotra (3.6cm).
Moderate left ventricle enlargment.
Normal global and regional systrolic LV functions with and EF of 53%.
Normal coronay artery origins.

Red Measurments:
End- Diastolic Dimension 6.2cm (3.7 - 5.3)
LV End - Diastolic Vol Index 116.2 ml/m2 (50 - 84)
LV End - Systolic Vol Index 54.5 ml/m2 (17 - 37)
Ascending Aorta Diameter 3.6cm (2 - 3.5)

Part of the problem is that the mri showed somewhat a different picture than the echos i have had done. after my first echo and a subsequent cardiac MRI showed different results, my doctor made me see an echo specialist at NYU, and the results were the same as the first echo: severe regurg and moderate enlargment. of course, the cardiologist at NYU argued the echos are more accurate while the cardiologist at the MRI center argued the MRI was more accurate. eventually, my doctor said that he trusted the MRI more. this type of disparity is the worse, esp. when the stakes are so high. no one, esp. a 21 year old, wants to think about having open heart surgery, so it naturally scares you. i believe all the results were presented a surgeon at Columbia; i believe Alan Stuart's name came up a bit - he worked with a friend of a friend, so it may have just been a refereal - but i never actually met with a surgeon. my doctor didnt think it was necessary, but if my condition is such that i have to place ANY restriction - even if it is one that says to keep my hr down - at all on my activity, i think thats a problem.

 

[Karlynn]

How high do you let your heart rate get? 175 seems like a pretty high rate for an athlete. My husband is an athlete and his resting heart rate is in the low 50's and has been since his competitive swimming days (back in the Ice Age). He runs with a limit of 160. I realize that your rate can go over 175 at peak activity, but if it's getting too much higher than that, that's not a good thing even for someone "in shape". Besides the rate not being good for the heart, you are also burning muscle.

I'm guessing that your heart is frequently going over 175 during physical activity because it does have a problem with the valve or other anatomy. If that is the case, pushing it past that is not good - and the doctor is right there.

So then you're back to - why wait?

Something to remember is that you will need to harness your exuberance and let your body recover fully if/when you have surgery. It will take months before you should let your body return to it's former athletic pace. We have had members here who have had serious complication after pushing too much too soon.

 

[DLH]

Jason,

I have felt the same way, at any age I think we all dead the thought of OHS. I agree that if limitations are needed then there is clearly a problem, be persistant with your doctor, voice your concerns,questions, desires and ask to see a cardiothoracic surgeon that specializes in your problem.

Good Luck,

 

[Jas0n]

with refrence to heart rates during exercise, it depends on one's physiology. hearts have different volumes. the way my coach used to explain it to me was the following: while race cars have small engines, they spin at very high rpms and in doing so, produce the peak of their horsepower at these levels. other motors might have more displacment, but will not rev as high. however, they both produce the same power. my heart works like the small race engine.

it is often believed that your max heart rate can be estimate the following way: 220 - your age. for me, that would lead to a max of about 198. impossible, i frequently see 210 and the most i have seen has been about 218 (and you really wont ever see your true max). i dont mean to be arrognet, so please take no offense, but in season i doubt your husband has the same form i usually have. on the same ride, his heart may be working at 150 bpm while mine is at 170 beats. but where his max heart rate is only 175 or so, mine is 220. so he's working at 85% of his max while im only at 77% of my max. while a small hill might quickly push him towards his max, it takes sustained efforts for my heart rate to continue to increase (a function of conditioning); sorta like a diminishing product curve. or if does increase quickly (a sprint for example), it will calm down relatively quickly as well. the biggest differnce, however, comes in conditioning. that is, how long can you sustain such an effort. training has allowed me to condition myself so that i can sustain such an effort (just below lactate threshold of about 190) for quite some time, and once i back off a bit, i can recover quickly. lance armstrong, for example, has a resting rate of 34 bpm but a max of 205. thats quite a range!! you cant simply go by heart rate; indeed, the most important measure is wattage, but thats a wholely different and much more technical converstaion. vo2 max also has an effect, as does lactate threshold. but the real point is that heart rate isnt really an adaquete indictor when one considers the psyiological difference between us. whether or not my heart's high revving nature is adversely affecting my BAV is, of course, a different issue, and an issue i would really love to learn more about. i understand that the BAV acts much like a nozzle, increasing the force required by the muscle to move the same amount of blood. also, with regurg, my doctor explains that blood can never fully be expelled from the lungs, limiting thier absobitive capacity. the lungs are like a sponge; a wet sponge can absorb less than a dry sponge.

as for the recovery issue, i know its going to be tough, but i suppose we'll see when that will actually be an issue. i broke a rib two weeks ago, and after two days i tried rock climbing. i climbed as hard as i usually do, and it hurt, but all atheletes (and i like to think cyclist are among hte tougher atheletes) learn to ignore hte pain and if they can, thrive on it. well climbing was not a good idea, i displaced the fracture in the process of climbing. but i need to be active. the broken rib is prob the reason that im starting to get so jittery about not riding. but it too will be healed, so ...

 

[Georgia]

Jas0n, I'm no expert at the numbers; but I'd be concerned about that left ventricle enlargement. I really really think you ought to get yourself to a good surgeon to see what's what; I think that at your age you should get a really good idea from an expert about your heart.

Do you have any indications of Marfan's?

Although you seem to be asymptomatic, you really don't want to damage your heart by your cardiologist "waiting", especially since you've been fortunate enough to discover your problem in the early stages!

 

[Jas0n]

Do you have any indications of Marfan's?

i dont know what marfan's is, but i will be def. doing a search to learn about it!! as far as i know, i dont have any of these indicators; it has never been mentioned to me at least. so the answer is a very ignorant no ...

edit: i did a quick search and besides the regurgitation, i dont have any of the other indicators.

 

[MarkU]

My BAV was the cause of my left ventricular hypertrophy. Prior to my surgery I was exhibiting symptoms of chronic fatigue, shortness of breath, and fluid build up in my lungs. In the 12 months after my AVR (St. Jude mech.) the enlargement reversed itself.
In the past two years I have done some pretty serious triathlon training and my resting heart rate has dropped from around 68 bpm to 44 bpm. My St. Jude mechanical valve has definitely removed the limitations I faced with my old defective valve and has allowed me to resume an active lifestyle.

 

[Marguerite53]

At the risk of sounding completely silly, you mention Lance Armstrong. Well, his little puppy, a yellow lab, had an Aortic Valve replacement. You are an avid cyclist. Maybe, just maybe, we are on the cusp of something much more huge than we all here might think. They are discovering an awful lot of athletes with heart problems. Might Mr. Armstrong, who is now very familiar with heart valve surgery (albeit veterinary), be interested in connecting you with someone who should be or could be studying just the things you are bringing up? He certainly has the science behind him...the team working so scientifically to perfect the cyclist's body... ..... Just planting some seeds, here....somewhat random.

Marguerite

This from www.cyclingnews.com interview with Lance..... LA: Yeah! He's a really cool guy... unfortunately he is not healthy. He's got a bad heart, basically. So one of the best animal hospitals and veterinary schools in the US is in College Station (Texas A&M University), where the wind tunnel is. They can do some surgery for him to work on the valve, but they want to wait -he's only four and a half months - until he stops growing a little bit before they determine how much the heart is going to grow and move and change. And we're not stopping there; we're getting second and third opinions.

Rex is probably going to take a trip to Ft. Collins, Colorado to see a Dr. Chris Orton... a 'small world' story; when we were in Santa Barbara during training camp, we were staying at a friend's house and the neighbours passed by with two labs and we started talking about their labs, just out of the blue, for no reason. And the lady said 'this one is a little miracle dog' and told the story about him, and at the time I didn't even have a dog. Then we found out about Rex and I remembered that the neighbour lady said that they flew their dog all around the country and had found this great doctor for their lab.

Sure enough, it turned out to be the same doctor in Ft. Collins, so Rex is going there for a checkup. But the doctors think they can help. They replace the heart valves with tissue from a cow. He's a cutie, he's a good puppy." He actually ended up in Colorado for the surgery.........

FORT COLLINS, Colo. - Lance Armstrong?s Labrador puppy is recovering from open-heart surgery at Colorado State University?s veterinary hospital.
The university says the seven-time Tour de France winner?s dog, Rex, was born with a defective heart valve that put him at risk of heart failure.
The Texas cyclist took the nine-month-old puppy to CSU for surgery in late August -- the same week he proposed to rock star Sheryl Crow.
Chris Orton, who heads the hospital?s cardiac surgery team, performed the valve replacement operation on Rex. He says the puppy is through the most critical stages of the procedure but will remain on blood thinner for the next three months. © 2006 The Associated Press.

 

[Jas0n]

sounds like a fine idea. now if i only knew lance. actually, a good customer of my shop was on the tour of hope team. and my boss knows frankie ardeau, who was lance's motorola/usps teamate. and another customer won a livestrong bike (this is remarkable, he actually bought a livestrong bike from us - its a $10k special edition bike - and then won another won at the ride of the roses raffle!!) at lance's fundraising ride. so i suppose if we all conspire enough .... something tells me i might have a better chance of find such a doctor through connections made on this site

 

[tobagotwo]

Jason, if you have enlargement of the left ventricle, you need to shut down the heavy-duty exercise. The ventricular enlargement is a result of stress on your heart, due to the regurgitation. It's called ventricular hypertrophy. Stenosis is the narrowing of an opening, particularly a valve opening. It's usually caused by a buildup of a calcium-based mineral deposit called apatite, which is pretty much like the crusty white-to-brownish deposits that build up on your showerhead.

Basically, what your heart is doing is like trying to fill a bike tire with a leaky air pump. Works you really hard, hurts like heck, and you don't get the pressure you need anyway.

It's not the heart muscle that's causing the problem, and the heart muscle can't fix it. Only a surgeon can.

You're not keeping it in shape by working it out. You're damaging it further. If you stop, it will likely be able to reduce in size after surgery (a process called remodelling). If you keep pushing it, it may never return to its normal size, and the resultant pressure on the rest of your cariovascular system could lead you to develop pulmonary hypertension. Then you're out of racing forever. Worse, you could wind up in a heart failure cycle that could severely shorten your life and steal your ability to enjoy it while you're here.

You can't pedal away from this one. You have a damaged heart valve that can wreck the beautiful machine that you've made of your heart. You also have an enlarging ascending aorta - which is the early stage of an aortic aneurism. That will have to be replaced or stabilized as well. You should push to have that done with the valve surgery, or they'll have to go back in later.

The ascending aorta starts at the aortic valve, which is the valve that closes off the left ventricle after it pushes the blood out of the heart. Unfortunately, your aortic valve doesn't close all the way, so some of the blood leaks back into the ventricle. Very frustrating for the heart.

Anyway, it's a huge blood vessel that rises up out of your heart and feeds oxygen-rich blood to your heart, your brain, and your upper body, before turning back down into your abdomen. When there is a problem with the connective tissue in it, it starts to expand, much like one of those long balloons you make animals out of. You blow your brains out into it for a while, and it seems like it will never expand. Then suddenly, it starts to expand in one spot, then extends the length of the balloon. Unfortunately, also like a balloon, when it expands too far, it can burst, with catastrophic results.

Okay, this sounds terrible. And it would be, except for one thing. These things can be repaired. Fixed. Replaced. So that they work like new. You get your life back.

But it will depend on you thinking ahead. As you seem to realize, you can give up this summer of riding. Or you can be a shadow of yourself, riding second best, huffing and puffing, and give up all your future summers of riding instead. You get to spend the rest of your summers thinking what a moron you were for destroying your chance to compete again in something you love. The last few sentences in your first post show that you're thinking along the right lines.

Your aortic valve isn't all that bad, but your ventricle is already enlarging due to the enormous stress you have put on it. Go down to walkng, and don't crank your heart rate up. Put the monitor in a drawer. You're 22. You'll be able to build yourself back up in one season. Down time will not hurt you.

Keep your heart in recoverable shape for the surgery. Save yourself for the adventure that comes after.

Best wishes,

 

[MitralMan]

Jason, see Dr. Ted Tyberg, cardiologist, at New York Hospital

Jason, see Dr. Ted Tyberg, cardiologist, at New York Hospital

He's an excellent cardiologist and a really good guy.

I can second Colvin (he did my mitral valve repair), but I'd start with Ted.

Best of luck to you!