General Discussion Triathlon Talk » Leaky heart valves Rss Feed  
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2007-06-21 3:36 PM

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Subject: Leaky heart valves
I've tried to ask my cardiologist this question, but since he could lose 100 lbs or so, he just doesn't seem to understand. Funny side bar, at my last visit, "Can I do triathlons?" "Sure." he says. "So doc, what do you do to stay in such great shape?", I ask. I swear I heard crickets he was so quiet!! ;-)

I was born with a tetrology of fallot, which is 3 heart defects: a bicuspid aortic valve, a hole between two chambers of my heart, and something else I can't remember - maybe one section of my heart is too small??

In a checkup a few years ago, I was told my aortic valve and pulmonic valve are leaking, and would eventually need to be replaced. I get an echocardiogram every year to monitor them.

I've been doing tri's for a year now. I had no athletic background before, because when I was a kid the doctors said that exertion was bad for me. Now, they say exertion, especially cardio, is good for me, and have cleared me for tris.

So, here are my questions. My resting HR is about 70 bpm, and has been since before tri's. I read about people who exercise and their RHR drops. Mine hasn't. Is that because I was so out of shape when I started and I just need to keep going regardless? Or, is it that my heart has to beat faster to compensate for the leakage, therefore if my heart is growing stronger and the valves are leaking more, the net effect is zero?

Also, when doing HR training, do my zones change because of the inefficiency of my heart due to leaking valves. Or, do I use the same HR zone as everyone else, but just may not have the endurance they have. I can't afford a VO2 test right now, so am having to use formulas to calculate.

Not sure if I make total sense. I've had a lot of time to ponder it when training, but can't come to a conclusion. I want to make sure I'm training hard enough, but just don't know how all of the general rules apply to me.

Thanks!
Greg


2007-06-21 5:27 PM
in reply to: #854840

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Subject: RE: Leaky heart valves
Doug,

I dont' know if anyone on this board can answer your questions regarding your own unique physiology. But if you suspect that your HR may be responding differently than it would if you did not have tetrology of fallot, then you should be workout out based on perceived exertion. You basically rate your effort by a descriptive scale that correlates with a number rating. These number ratings can be assigned training zones much like the formulas result in training zones.

Formulas will be useless to you, and you do not need a VO2 test to know where to train. In fact, it's not the VO2 that you need to know, it's the lactate/anaerobic threshold. But these can be estimated with a field test, and correlated with a Perceived Exertion chart. Your HR value may not be as useful to you, but your speed & distance covered during a fixed, repeatable threshold field test can be very valuable.


Hope that helps.
2007-06-21 5:58 PM
in reply to: #854840

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Subject: RE: Leaky heart valves

Greg,

 Pulmonary atresia is the part your missing...the pulmonary outflow tract---> to the lungs is small...
I second abear regarding using RPE for training. One of the biggest ways for the heart to compensate when other things limit cardiac output or oxygen delivery is to increase the heart rate... Make sure you got a cardiologist that is comfortable with pediatric heart disease...especially is surgically uncorrected.  Go by RPE...Be safe.

JT

2007-06-21 6:10 PM
in reply to: #854840

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Subject: RE: Leaky heart valves
Thanks! I'm still trying to figure out the RPE thing because I can feel OK but my HR is relatively high. When I started tri's last year, I was going by HR. Maybe that's why I feel that I haven't lost weight like I should have. OTOH, it forced me to build slowly - probably a good thing after 38 years of neglect.

I forgot to mention that mine was corrected in 1974 by Dr. Denton Cooley. But I guess it doesn't last forever, ala the regurgitation in the valves.

I'm looking forward to my next ECG to see if any improvements have been made.

Greg

p.s. I'm not looking for med advice. As one person said, individual physiology differs and I understand that. Since I know my body is generally different, I'm just trying to generally learn more about my body so I can be effective and safe.
2007-06-21 7:48 PM
in reply to: #854840

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Subject: RE: Leaky heart valves

Not quite your situation, but here goes:

I had a bicuspid aortic valve that was first diagnosed when I was about five years old.  Had my first extensive work up, including a heart catherization, when I was 15 (had to miss two days of football practice).

I was asymptomatic and was given no restrictions while growing up, but was told that I would eventually need to have my valve replaced when I got "old", like in my 40's.

I was active my entire life: multiple sports in high school (football, wrestling, tennis, track, swimming, etc.)  Had scholarship offers to play small college football and wrestle.  Wrestled one year in college and did a couple of years of college tennis as a walk-on.

After college stayed active primarily with tennis, running and weightlifting.

True to the earlier predictions, my biscuspid aortic valve started to calcify in my mid-40's and I started to display symptoms of chronic fatigue, shortness of breath, heavy sweating, and fluid build-up in my lungs that forced me to sleep sitting up every night.  An echo cardiogram also revealed the development of left ventricular hypertrophy (LVH), enlargement of the left ventricle walls to compensate for the leaky biscuspid valve.

Had open-heart valve replacement surgery to get a St. Jude mechanical valve in December of 2000.  Surgery went well.  Was in the hospital for four days.  They had me sitting up the afternoon of the surgery and up walking the next day.  All the same it took me about nine months to fully recover from the trauma of the surgery.

One of the downsides was that my mechanical valve necessitates that I be on Coumadin anti-coagulant for the rest of my life in order to minimize the risk of heart attack or stroke from blood clots forming on the mechanical valve.  Have to get blood tested every six to eight weeks to make sure I'm in theraputic range with my Coumadin. 

Post-op my cardiologist strongly urged that I give up my heavy weightlifting and switch to more aerobic pursuits.  One thing led to another and I got the urge to give triathlons a shot (with my doc's blessing, provided that I closely monitor my heart rate).  That's how I eventually ended up here on BT.

In the 3-1/2 years I have been doing triathlon training my resting heart rate has dropped from the mid 70's to the low 40's and my blood pressure has dropped from pre-hypertension range to normal (had it checked today and it was 118/80).  The LVH has also completely reversed itself.

At the time of my valve-replacement surgery I was told I had a life expectancy of three years without the surgery.  Since that was six years ago, I am feeling pretty blessed to still be here.  Got to see both of my kids graduate from college and start their working careers.  A downside is that severe depression can be one of the side effects of this type of major surgery.  The stress can also be difficult for other family members to deal with and can potentially cause irreparable damage to marriages and other relationships.   

That's the good, the bad and the ugly, at least as far as my experience.

HTH,

Mark  

 

2007-06-21 8:08 PM
in reply to: #854840

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Subject: RE: Leaky heart valves
Wow, that's quite a story! Glad to hear you are doing well.

What was your resting HR just before your sugery? Do you know? Also, why did you choose a mechanical valve over a bovine valve? It's my understanding that a mech valve needs to be replaced more often, plus required the meds you mentioned, where a 'natural' valve does not. I may be wrong on that.

My wife was worried earlier this year that my heart was failing. When I stepped up to training for OLY distances (I've not done one yet), I would get exhausted in the middle of the afternoon - one of the symptoms that it's time for surgery. But from my reading on BT and other boards, this isn't that uncommon. If I take a few days off, I don't have the same level of fatigue. So, even though I'll have my checkup, I think I'm OK.

Regarding stress, we know what that is. If you've seen any of my other posts, you know that my wife has terminal cancer. Plus, I'm an entrepreneur and am trying to get a new company funded. So, have had to deal with crazy financial stuff too because of things that were out of our control. 3 years ago we found out about my wife's cancer, my heart problems, and that a business partner of mine had been steeling from the company - all within a few months. We've still not recovered from the ex-partner steeling. Part of the reason I started this sport was to give me an outlet for my stress. It nearly destroyed me a little over a year ago.

Thanks for sharing!
Greg


2007-06-21 8:47 PM
in reply to: #854840

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Subject: RE: Leaky heart valves

Just for the record, a mechanical heart valve will probably last "forever", but requires that the patient take Coumadin (generic name Warfarin) for the rest of their life to minimize the threat of stroke or heart attack from clot formation.  Tissue values (porcine, bovine, human cadaver) are subject to wearing out over time.  There have been a lot of improvements in recent years with tissue valves, but at the time of my surgery six years ago, the expected life of a bovine or porcine valve was 10-15 years, meaning that at age 47, I could potentially be facing multiple valve replacement surgeries down the road, with mortality rates doubling every time (mortality rate for healthy first-time valve-replacement patients is about 2%).  Choosing a mechanical valve was a pretty straight-forward and logical decision as far as I was concerned.  Open-heart surgery was by far the most traumatic thing I've ever been through in my life - something that I'd prefer not to have to go through again.  Lots of horror stories about Coumadin, but it's really not been a big deal for me. 

You may want to checkout the discussion forums over at Valvereplacement.com.  Lots of good information and discussions regarding heart valve replacement (I post there as 'MarkU').  I've gotten acquainted with a couple others here on BT that have similar stories to mine (one is an Ironman), but I don't want to 'out' them without their permission.

Please feel free to PM me if you have any private questions or concerns that I might be able to help with.

Mark 

PS - just an aside, once I got over being self-conscious about my surgical scars (main 7" scar, plus two 1" long drain tube incisions), it was kind of cool seeing how people reacted to seeing them at the pool or waiting around  for the start of a triathlon. Kind of psyches some people out... 

 

2007-06-22 8:19 AM
in reply to: #854840

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Subject: RE: Leaky heart valves
I had never heard of ValveReplacement.com. That's a great site. Lots of info from different angles - and good to read the Ironman stories too.

I've had a chest scar since I was six. All my friends growing up thought it was cool. Since my wife had her stomach removed, the spot where they put her feeding tube looks like a 2nd belly button. It really gets some strange looks. I keep telling her she needs to get them both pierced and hang a chain between them.

I definitely have IM dreams. My wife's health may prevent that in the next year or so. Then, assuming the docs are right, I'll be an only parent which won't make IM training easy. So I may be several years from IM, but now I know it can still happen.

Greg

p.s. Saw the old post about your Livestrong jersey. Did you frame it? Did you get a new one? I don't have one yet, but definitely want one. I wish they made a tri-jersey. I always wear my LS visor when racing. I wish they had that in a headsweats version.
2007-06-23 6:05 AM
in reply to: #855510

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Subject: RE: Leaky heart valves

Valvereplacement.com is a great source of info and support.  It's been a big help for me - lots of good folks there sharing common experiences (not unlike BT).

It's entertaining to read the frequent threads when the relative merits of mechanical versus tissue valves are debated - gets pretty intense and nasty at times.

Still have the shredded/bloodstained LiveStrong jersey hanging in my closet - did get a new one however.  

Mark

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