PDA

View Full Version : Long Q Interval Any swimmer's out there who have this?



Bobinator
August 2nd, 2011, 10:31 PM
I was recently diagnosed with a Long Q Rhythm. I'm wondering if there is anyone else out there with this problem.
My Dr. recommends Beta Blocker and no more racing. He also commented that I've had this condition all my life so I'll probably be ok.
I would like to PM with anyone out there who is swimming with a similar situation. I am feeling very conflicted and would like to talk to someone in the same boat.
I read the paragraph about the sisters who swam in Nationals with a Long Q diagnosis, in fact that article motivated me to go to the electrophysicist (sp) and get this checked out by a specialist.

jim thornton
August 2nd, 2011, 11:13 PM
Bob, I was diagnosed with some sort of cardiac abnormality, and I couldn't remember the name. I looked up yours, which seems to be technically known as Long QT syndrome.

It turns out this is not what I have. I have first degree heart block, which (knock on wood) doesn't seem to have too many serious repercussions most of the time.

The Long QT Syndrome, on the other hand, seems a bit more worrisome according to stuff I found on the Internet. Obviously, you should go to a good cardiologist, preferably one with a background in sports. Your history of marathoning and now swimming suggests to me that the standard cardiologist who spends his or her time treating the standard overweight sedentary American patient might be inclined to "better safe than sorry" namby pambyism, and try to sideline you from overly vigorous exercise.

Anyhow, here is a quote I found from the Mayo Clinic website, which usually presents health info in an easy to understand but quite nuanced fashion:

You may want to seek a second opinion if your doctor diagnoses you with long QT syndrome. Treatments for long QT syndrome can be life altering, such as avoiding strenuous exercise, taking powerful medications or having surgery. In addition, evidence suggests that misdiagnoses related to this condition are not uncommon — including diagnosing long QT syndrome when it's not actually present, and overlooking the condition when it is.

Best of luck, dear Bobinator! If you haven't had symptoms, like fainting during vigorous workouts, I personally would be inclined to continue working out--but maybe make sure there is a defibrillator handy, and somebody who knows how to use it.

Perhaps one of our learned forumite physicians--Drs. Dixon, Jaegermeister, and Gull--could opine from a more reputable perspective than this layman!

Bobinator
August 2nd, 2011, 11:24 PM
Hi jImby. Thanks for your advice! According to my electrophysicist he is the person who trained most of the people at Mayo and has written books about such problems. He was very adamant about that!
I really felt like he was trying to tell me I could go ahead and proceed as I was currently doing but that he had to advise me to do the other things because that was the standard of care. I guess I could be reading him wrong but I don't think so. At this point I think I'm just going to swim workouts with generous intervals and not push it maximally. I think ow is a bad idea but I hate to think I'll never swim in another meet :( He also mentioned swimming seem to be the activity that is the most problematic for Long Q. He told me I did not had a syndrome because I was symptom free. I don't know if that's something to be happy about or not. I'm feeling very conflicted :(

jim thornton
August 2nd, 2011, 11:42 PM
So the worry is that really maximal exercise might somehow trip your heart into v-fib, which is fatal unless it gets shocked back into normal beating via a defibrillator?

I can see why open water swimming might be problematic, but what about pool meets? Most facilities have AEDs now, and if you told the meet director about your condition, then they could be ready to snap into action if you needed it, right?

You are more of a distance swimmer than a sprinter, right? I have a friend with a-fib who had to stop sprinting but was able to continue racing longer events. His heart rate would pick up, but not to the jack rabbity levels of a drop dead sprint.

Anyhow, I wonder if you could talk to the doc again and explain how important exercise is to your life and see if he can provide "off the record" (i.e., you won't sue!) parameters for how much you can do, and what kinds of events, if any, you can compete in? Seems to me you might be able to still compete in 500s, 1000s, 1650s, hour swims, etc.

One other note: what I read was that there are a variety of genes that can cause this. I think your insurance company should pay because it's possible your kids could have the same thing. And if it turns out you don't have any genetic markers, maybe it was a false positive test after all? The result of some medicine or electrolyte imbalance or too much chard following a dehydrating workout?

jim thornton
August 2nd, 2011, 11:59 PM
Bob--did you know that Worlds Gold Medalist, Dana Vollmer, was thought to have this?

Fascinating article: http://www.sportsinjurybulletin.com/archive/arrhythmias.html

Sample quote:

Management of the athlete with cardiac disease is equally problematic. The clinician is always tempted to play it safe in such instances, discouraging participation in competitive sports and endurance training, and instituting prophylactic treatment whenever there is a perception of increased risk. Athletes are understandably reluctant to relinquish the aspirations and investment of a lifetime. The stakes are even higher for professional sportspeople, in whom a cardiac diagnosis will threaten career and livelihood.

gobears
August 3rd, 2011, 08:42 AM
Hi Bobinator--

First off, I'm so sorry you are having to go through this. This is one of the creepiest experiences I've ever had. To go from extremely active and healthy to being told you may have a potentially fatal heart condition really, really stinks.

I had an EKG last Spring in preparation for a routine OB surgical procedure and the OB sent me to the cardiologist because of my QT interval. I went from the cardiologist (who had decided I was ok based on a great stress-test result) to the electrophysiologist (just to be safe). The electrophysiologist didn't like the looks of my resting QT interval and had me do genetic testing. I think he was sure I had type 3 LQTS (where I'd end up needing a defibrillator). He never told me I had to stop exercising outright but that may be because I was so adamant that I've made it 45 years with no problems. I didn't compete this summer and took a small dose of Beta Blockers while trying to be careful training.

This all started in March and I finally got my genetic testing results back in the middle of July (took 5 weeks after they got my blood sample). I do not have any of the three genetic markers for LQTS. I have an abnormality but it's not known to have any specific effects. So, I've been cleared to resume my normal life (though I need to avoid any drugs that lengthen QT intervals and to make sure I keep my electrolyte levels normal).

Does your doctor recommend genetic testing? It's not cheap--even with insurance it's pricey. However, for peace of mind and the ability to inform your relatives of any potential issues, I think it's worth doing.

I probably know exactly how you are feeling right now. Irritated, a little freaked out and confused at how you could possibly have something so serious and have lived so actively with no problems thus far. Please PM me if you want to chat some more.

gull
August 3rd, 2011, 08:50 AM
Is there a history of sudden death in your family? If not, your individual risk may be less. I agree with genetic testing. The concern is that lethal arrhythmias can develop during strenuous exercise in patients with long QT syndrome.

Bobinator
August 3rd, 2011, 08:52 AM
Hi Amy!!! Thanks for your response. I am hoping to find out today if my insurance will take care of the genetic testing. I figure it will since it's a pretty great policy. Your words are encouraging! I already figured I needed to make sure my potassium levels are good due to the Q rhythm being the part that is fired by potassium. What do you do to insure your potassium level is where it should be? I've googles a list of potassium rich foods I intend to start eating regularly (actually I already eat most of them regularly)
I am sorry you had to go through this. I had no idea. I'm going to keep in touch with you about this. If I get annoying to you just tell me so and I'll back off. Thanks, Robin

Bobinator
August 3rd, 2011, 09:00 AM
Is there a history of sudden death in your family? If not, your individual risk may be less. I agree with genetic testing. The concern is that lethal arrhythmias can develop during strenuous exercise in patients with long QT syndrome.

Hi Gull,

No member of my family has died from a sudden cardiac event.
I am an only child and both my parents died from lung cancer. (they both smoked) My dad was an extremely successful high school and college athlete, well at least until he enlisted in WWII and became a Ranger.
I am hoping my insurance pays for the genetic testing and I am getting an echo-cardigram in about an hour. I really don't want to try the beta blockers, the side-effects sound miserable and make me want to cry. I am planning to swim again today, easy sets on moderate to easy intervals. I keep telling myself "nothing is different from last week"
Do you think sprinting would be worse for me than distance? I rarely do a proper sprint, I'm not wired for it. I really like the 500 / 800 / 1500 type stuff. I guess I don't need to race, or I could just do it purely for the social aspect and take it easy. I'm not that fast anyway.

gull
August 3rd, 2011, 09:06 AM
Some beta blockers, like Bystolic, are tolerated much better than others.

If you do in fact have long QT syndrome, I'm not sure that anyone will "clear" you to compete. So at the end of the day you will just have to decide for yourself if you are willing to take the risk.

gobears
August 3rd, 2011, 09:15 AM
I won't be annoyed :) See if your electrophysiologist will work with your insurance company to get them to cover you if you have any issues. Mine was helpful with that.

I've been eating bananas and dried apricots fairly regularly since this all started. My doctor told me to drink Gatorade when I saw him last. I do that sometimes but mostly try to eat fruits and veggies to get all those nutrients.

Are you like me in that you have no personal or family history of any kind of fainting or sudden death? This diagnosis just completely struck me out of nowhere. That's part of what made it so creepy. That, and I have three kids who I was worried I might have passed some hideous gene on to.

Jim--I read the Dana Vollmer article and have to say that I kind of agree with the last statement where Dana said she'd rather die swimming than doing nothing. However, when you factor in your kids, that makes the decision process that much more difficult. In my case, the Long QT intervals seemed to only occur at rest. So, really, not exercising seemed more dangerous for me!

gobears
August 3rd, 2011, 10:16 AM
BTW, I was put on a low dose Beta Blocker (Metoprolol) while my genetic testing results weren't known. The doctor seemed to be telling me he thought my QT issues wouldn't be affected by the Beta Blocker but to take it anyway. He had me start with half a 25mg pill--and I just stayed on that. It did feel odd at first (though it's hard to say how much of that was me just being a little freaked out). I thought it would really affect me but I got used to it pretty quick. Didn't really seem to affect my swimming all that much--but maybe because I was on such a low dose. The doctor ended up taking me off the meds once my test results were back.

Good luck at the doctor this morning :)

jim thornton
August 3rd, 2011, 11:17 AM
I have a general question that I am hoping Gull can answer. (By the way, Gull, great 800 m at your recent championships.)

The question is this:

Are serious adult athletes the same, physiologically speaking, as your typical overweight sedentary Americans with heart and other issues?

Two times I have been given very worrisome diagnoses. The first was when I was diagnosed with anemia. The second was when I was diagnosed with first degree heart block.

Both times, perhaps due to my psychiatric frailty, which alternates between a "worried well" mentality to outright clinical hypochondriasis, these conditions threw me into a major nutty (the layman's term for health-diagnosis-related spasms of anxiety and depression.)

However, in both cases, further investigation revealed that conditions that can be highly worrisome in the typical American might not be so bad in me; in fact, they might actually represent positive adaptations to exercise.

The anemia, for instance, was most likely so-called sports anemia, a pseudo anemia that results from increased blood plasma diluting the blood concentration, making it look like I had a deficiency of RBCs, etc., when in fact they were only diluted.

As far as the heart block goes, this, too, appears to be related to being in good shape and is not uncommon in trained endurance athletes. My resting heart rate is as low as 34 bpm. As one doctor explained it, when your heart beats that slowly, some intervals have to become elongated, and in my case it was the one associated with the so-called first degree block.

I guess my question is this: is it possible that Amy, Robin, and Dana all suffer a "problem" that may not be problematic at all, but rather represents some as yet unelucidated adaptation to loads of hard training over many years?

Maybe this is magical thinking on my part, but I sometimes wonder if medical science's fast-evolving ability to diagnose anomalies may identify "disorders" that are best left un-revealed. Had Amy and Bob never learned about their long q intervals, isn't it more likely than not they would have been able to exercise, as they always had, long into their dotage without any problems?

Are there areas where ignorance really is bliss?

gobears
August 3rd, 2011, 11:40 AM
Are there areas where ignorance really is bliss?

Great questions, Jim. I've wondered the same thing. I didn't know what I was going to do if I tested positive for a known QT issue. Do you tell your kids that they might suddenly drop dead if they exercise or do anything adventurous? Or do you let them live life? Especially when you and every one of your family members have lived symptom-free for years and years?

gull
August 3rd, 2011, 12:07 PM
Thanks, Jim. And congratulations on your PB in the 800. Very impressive swim.

I am not aware of any data to suggest that your level of conditioning affects your risk of sudden death in long QT syndrome. It is known that exercise can pose more of a risk in certain genetic subtypes than others.

jim thornton
August 3rd, 2011, 12:29 PM
Thanks, Jim. And congratulations on your PB in the 800. Very impressive swim.

I am not aware of any data to suggest that your level of conditioning affects your risk of sudden death in long QT syndrome. It is known that exercise can pose more of a risk in certain genetic subtypes than others.


Not to hijack this thread, but it looks like we both might make the TT in the 800 this year. Only 3 guys at nationals beat your time, and two of them were already ahead of you in the event rankings section, so you are now bumped to 7th. There was a guy at Cleveland who also beat your time, so by my reckoning, you are currently in 8th--with some leeway for other unreported stragglers.

It could be close.

Best of luck!

Bobinator
August 3rd, 2011, 02:04 PM
Thanks, Jim. And congratulations on your PB in the 800. Very impressive swim.

I am not aware of any data to suggest that your level of conditioning affects your risk of sudden death in long QT syndrome. It is known that exercise can pose more of a risk in certain genetic subtypes than others.

And which genetic sub-type is more at risk? I'm guessing it's women?

Bobinator
August 3rd, 2011, 02:12 PM
BTW, I was put on a low dose Beta Blocker (Metoprolol) while my genetic testing results weren't known. The doctor seemed to be telling me he thought my QT issues wouldn't be affected by the Beta Blocker but to take it anyway. He had me start with half a 25mg pill--and I just stayed on that. It did feel odd at first (though it's hard to say how much of that was me just being a little freaked out). I thought it would really affect me but I got used to it pretty quick. Didn't really seem to affect my swimming all that much--but maybe because I was on such a low dose. The doctor ended up taking me off the meds once my test results were back.

Good luck at the doctor this morning :)

Hi Amy! My Dr. put me on the same med at the same dose. I told him I was starting by just taking half, he laughed and said that was fine but a very small dose. I forgot I took it but I could feel it kick in right before the echo test. It really makes me feel relaxed. I'm afraid a whole 25 mg. may put me to sleep. I think I'll go halves a couple days before trying a whole. I have never taken much medication and I seem to be fairly sensitive to it.
Oh, the Dr. told me to have all 3 my offspring get ekg's! All 3 were swimmers till age 13. The oldest swam through high school, the middle is currently a pro skateboarder, and the youngest ended up going the cross-country and track route. None of them ever had a fainting or heart issue. Dr. still said they should do it so we will.

Bobinator
August 3rd, 2011, 02:16 PM
Some beta blockers, like Bystolic, are tolerated much better than others.

If you do in fact have long QT syndrome, I'm not sure that anyone will "clear" you to compete. So at the end of the day you will just have to decide for yourself if you are willing to take the risk.

Do you think I should keep my heart rate under a certain level during workouts? I just feel so good when I swim.
I wonder why they haven't given me a exercise stress test to see what that does to the rhythm. In the echo test I had to "bear down", sniff, and hold my breath in and out. I hope it comes out okay:badday:

Bobinator
August 3rd, 2011, 02:27 PM
Bob--did you know that Worlds Gold Medalist, Dana Vollmer, was thought to have this?

Fascinating article: http://www.sportsinjurybulletin.com/archive/arrhythmias.html

Sample quote:

Management of the athlete with cardiac disease is equally problematic. The clinician is always tempted to play it safe in such instances, discouraging participation in competitive sports and endurance training, and instituting prophylactic treatment whenever there is a perception of increased risk. Athletes are understandably reluctant to relinquish the aspirations and investment of a lifetime. The stakes are even higher for professional sportspeople, in whom a cardiac diagnosis will threaten career and livelihood.

Wow, amazing article! Especially after watching her win the 100 fly in a WR!
I'm not sure I have many similarities with Dana except her love of the water. At her level I can see why she might choose to continue on, I am just amazed that it doesn't effect her performance on a subconscious level. She must be tougher than nails!

gobears
August 3rd, 2011, 02:59 PM
Hi Amy! My Dr. put me on the same med at the same dose. I told him I was starting by just taking half, he laughed and said that was fine but a very small dose. I forgot I took it but I could feel it kick in right before the echo test. It really makes me feel relaxed. I'm afraid a whole 25 mg. may put me to sleep. I think I'll go halves a couple days before trying a whole. I have never taken much medication and I seem to be fairly sensitive to it.
Oh, the Dr. told me to have all 3 my offspring get ekg's! All 3 were swimmers till age 13. The oldest swam through high school, the middle is currently a pro skateboarder, and the youngest ended up going the cross-country and track route. None of them ever had a fainting or heart issue. Dr. still said they should do it so we will.

Funny that you say the Beta Blocker makes you feel relaxed. I actually kind of liked the feeling at night. I tend to be a little hyper so, besides making me a little more tired, I didn't mind the half-pill dose. I will say that I felt funny swimming at first on it--like I couldn't get my heart rate up. That didn't last. But I never went up to the full dose.

Interesting that your doctor wants your kids to have EKG's before you have your genetic testing results back. Especially considering you haven't had any fainting spells or family history of any kind. And, considering EKG's can't always pick up long QT issues. My doctor didn't say anything about having my kids tested and I was hesitant for fear it would scare them. My kids are all under 14 and not as heavily athletically involved as yours, though.

Hope all the tests come out great. Until then, remember you've been fine all these years and that nobody is guaranteed another day on this planet whether they have a heart condition or not. Enjoy being here :applaud:

nkfrench
August 3rd, 2011, 05:29 PM
My recollection - Dana did not swim year-round until age 11 and had USAS AAAA cuts within a few months. She made her Sr National cuts age 12. Her coaches did not have her training 2-a-days until later after she developed a better training base.

While she began swimming on a recreational summer league, she did have solid coaching. It seemed like her parents had the right touch, involved but letting it be "her" sport.

Her innate abilities were recognized immediately - she just made swimming fast look so easy. She also has the kind of competitive fire and mental focus you can't coach into somebody. I will always enjoy hearing about her accomplishments.

gull
August 3rd, 2011, 06:33 PM
And which genetic sub-type is more at risk? I'm guessing it's women?

Actually I was referring to the specific genes that have been linked to long QT syndrome.

swimshark
August 4th, 2011, 10:03 AM
Bobinator, I'm sorry to hear about this diagnosis. I know, as swimmers, we all want to be active as long as we can and hearing something like this is not good news.

I don't know your specific condition but you talked about potassium. My dad has been on arthritis medicine for about 50+ years that they now know can damage the kidneys. He gets a blood test once every 3 months or so to test his potassium levels. He also stays away from potassium rich foods such as melons, bananas, peanuts, avocados, potatoes, etc. He has a list that is about 10 pages long of foods and their potassium amount since it's not something generally listed on food labels. See if one of your doctors has a list like this.

Good luck :)

Bobinator
August 4th, 2011, 11:20 AM
Thanks Swimshark! As it works out I already eat lots of potassium rich foods! I googled it right away after the doc explained the process!
At this point I'm just trying to remember nothing bad has really happened. It's funny, the 2X I've swam since this diagnosis I've dreaded getting in the water. I've had to tell myself "just get in and go slow, do open turns if you want." Once I get in I feel totally normal and anxiety free. I'm trying to really be loose and stretchy (something I need to work on anyway) and not push too hard but get a workout at the same time. I've ended up swimming pretty much like normal, maybe a little longer intervals on sets over 200 but I don't really mind that. I'm feeling positive, I think things will eventually work out fine.

Bobinator
August 4th, 2011, 11:25 AM
Funny that you say the Beta Blocker makes you feel relaxed. I actually kind of liked the feeling at night. I tend to be a little hyper so, besides making me a little more tired, I didn't mind the half-pill dose. I will say that I felt funny swimming at first on it--like I couldn't get my heart rate up. That didn't last. But I never went up to the full dose.

Interesting that your doctor wants your kids to have EKG's before you have your genetic testing results back. Especially considering you haven't had any fainting spells or family history of any kind. And, considering EKG's can't always pick up long QT issues. My doctor didn't say anything about having my kids tested and I was hesitant for fear it would scare them. My kids are all under 14 and not as heavily athletically involved as yours, though.

Hope all the tests come out great. Until then, remember you've been fine all these years and that nobody is guaranteed another day on this planet whether they have a heart condition or not. Enjoy being here :applaud:

Amen to that Amy! I'm just glad I'm not totally freaking out and that the medicine seems ok so far.
I may have my kids hold off till I get the genetic testing. They are not very enthused about getting an ekg. The oldest of is pregnant currently, she said her ob would do it. Daughter #2 is in Physician's Assistant School, she's a little miffed but usually goes with the program. My son really doesn't do doctors unless it's an emergency situation. He will be the tough one!

swimshark
August 4th, 2011, 12:25 PM
Thanks Swimshark! As it works out I already eat lots of potassium rich foods! I googled it right away after the doc explained the process!
At this point I'm just trying to remember nothing bad has really happened. It's funny, the 2X I've swam since this diagnosis I've dreaded getting in the water. I've had to tell myself "just get in and go slow, do open turns if you want." Once I get in I feel totally normal and anxiety free. I'm trying to really be loose and stretchy (something I need to work on anyway) and not push too hard but get a workout at the same time. I've ended up swimming pretty much like normal, maybe a little longer intervals on sets over 200 but I don't really mind that. I'm feeling positive, I think things will eventually work out fine.

I'm glad to hear this. Listen to your body and stay positive!

SADSFoundation
August 4th, 2011, 12:31 PM
Hey there - I am with the SADS Foundation (Sudden Arrhythmia Death Syndromes). We work with all kinds of genetic electrical heart disorders, including Long QT. I invite you to contact us at any time and visit our website at www.StopSADS.org or 1-800-STOP SAD. We also have a huge cause on Facebook, and you can e-mail me personally at laura@sads.org with any questions you have. I hope you're doing well. Laura

Bobinator
August 4th, 2011, 05:14 PM
Hey there - I am with the SADS Foundation (Sudden Arrhythmia Death Syndromes). We work with all kinds of genetic electrical heart disorders, including Long QT. I invite you to contact us at any time and visit our website at www.StopSADS.org or 1-800-STOP SAD. We also have a huge cause on Facebook, and you can e-mail me personally at laura@sads.org with any questions you have. I hope you're doing well. Laura

Thanks Laura! I'll go visit your sites right now! :angel:

taruky
August 5th, 2011, 01:41 PM
Bobinator, if I may ask, what was your QTc (QTcorrected) interval? There are people with mild prolongation of the QTc and there are those with significant prolongations. Mild would be in the 460ish range, significant would be 500+ish.

When the doc told you that you don't have a syndrome, this is probably what he meant. There are many many causes of prolonged QTc. Medications, electrolyte imbalances, idiopathic (meaning no freaking clue why you have it), and genetic. Some of the genetic causes may be "syndromes" because they are associated with other findings. One in particular is the Jervel and Lange-Nielsen syndrome which is associated with deafness (I'm sure someone asked you about deafness in the family).

The reason someone with long QT is at risk is as follows. The QT interval is the time it takes for the heart to repolarize, i.e. get back to its resting electrical state. Normally the ventricles should be completely repolarized before the next depolarization starts (first in the atria, then moves to the ventricles). If it takes a long time for the ventricles to repolarize, then some of the ventricle may be ready to accept a new depolarization and some is not. The electrical impulse then kind of gets shunted along a new and unstable pathway, and suddenly you can get this crazy disorganized depolarization (like a chicken with its head cut off) operating completely independantly of the atria and going super fast. The ventricles can't fill with blood, and their contractions are ineffective.

So, regardless of the cause of long QT or whether there is family precedence involved, someone with a long enough QTc is at risk.

A couple questions I always use to screen high risk adolescents are:
1. Have you ever passed out during exercise
2. Is there a family history of sudden cardiac death
3. Is there a family history of anyone who died drowning
4. Is there a family history of an unexplained motor vehicle accident death

Aside from swimming and intense exercise, collapsing after sudden fear (like hearing a loud BOOM) is always concerning.

Not everyone instantly dies from the first episode. Some people are luckly enough to regain the normal rhythm and simpleyt experience light headedness or syncope without death.

There are many things that doctors encounter which require risk weighing. Any time I prescribe a medicine I assess the risks and benefits. Any time I order a CT scan I do the same. If there is a chance of death and viable alternatives, I will not take tht risk. Your electrophysicist, while he may think the chance of sudden death is small, will in no way tell you it's OK to swim. He may explain the risks, but the decision is up to you. It would be absolutely stupid of him to assume that risk because as nice a guy as you might be, there is some member of your family and some lawyer that will get together and lick their chops.

Bobinator
August 5th, 2011, 09:55 PM
Bobinator, if I may ask, what was your QTc (QTcorrected) interval? There are people with mild prolongation of the QTc and there are those with significant prolongations. Mild would be in the 460ish range, significant would be 500+ish.

When the doc told you that you don't have a syndrome, this is probably what he meant. There are many many causes of prolonged QTc. Medications, electrolyte imbalances, idiopathic (meaning no freaking clue why you have it), and genetic. Some of the genetic causes may be "syndromes" because they are associated with other findings. One in particular is the Jervel and Lange-Nielsen syndrome which is associated with deafness (I'm sure someone asked you about deafness in the family).

The reason someone with long QT is at risk is as follows. The QT interval is the time it takes for the heart to repolarize, i.e. get back to its resting electrical state. Normally the ventricles should be completely repolarized before the next depolarization starts (first in the atria, then moves to the ventricles). If it takes a long time for the ventricles to repolarize, then some of the ventricle may be ready to accept a new depolarization and some is not. The electrical impulse then kind of gets shunted along a new and unstable pathway, and suddenly you can get this crazy disorganized depolarization (like a chicken with its head cut off) operating completely independantly of the atria and going super fast. The ventricles can't fill with blood, and their contractions are ineffective.

So, regardless of the cause of long QT or whether there is family precedence involved, someone with a long enough QTc is at risk.

A couple questions I always use to screen high risk adolescents are:
1. Have you ever passed out during exercise
2. Is there a family history of sudden cardiac death
3. Is there a family history of anyone who died drowning
4. Is there a family history of an unexplained motor vehicle accident death

Aside from swimming and intense exercise, collapsing after sudden fear (like hearing a loud BOOM) is always concerning.

Not everyone instantly dies from the first episode. Some people are luckly enough to regain the normal rhythm and simpleyt experience light headedness or syncope without death.

There are many things that doctors encounter which require risk weighing. Any time I prescribe a medicine I assess the risks and benefits. Any time I order a CT scan I do the same. If there is a chance of death and viable alternatives, I will not take tht risk. Your electrophysicist, while he may think the chance of sudden death is small, will in no way tell you it's OK to swim. He may explain the risks, but the decision is up to you. It would be absolutely stupid of him to assume that risk because as nice a guy as you might be, there is some member of your family and some lawyer that will get together and lick their chops.

Thanks for the great information Taruky. I had a lengthly conversation with the people at SADS today. One of the first questions they asked me was my my QTc #. I don't think my electrophysicist gave me this number. They also wanted to know how many ekg's he took or if I had a stress test. I had 1 ekg and he didn't do an exercise stress test. I did have an echo-cardiogram the next day.
I am hoping my insurance covers much of the genetic testing. I have 3 kids, my oldest is currently pregnant.
I have been a runner, swimmer, triathlete, and all-around workout person since age 11. I've never passed out or had any of the symptoms. I have no known family history of drowning, car accident deaths, or any type of sudden death. This is all very puzzling to me but I feel fortunate to learn of this problem while I have time to do something about it.
I have been doing normal swim workouts this week. I was planning to compete in an open-water race saturday but decided against it.
If I have to give up racing I can deal with it but I'm really hoping I can continue swimming workouts at least!

jim thornton
August 5th, 2011, 10:05 PM
Let me be the first to pose a possibility:

A false positive reading, triggered by something unrelated to your general heart health.

I think what Taruky was saying in his excellent reply is that doctors are so skittish about malpractice lawsuits these days that if there is even the most remote chance that exercise could trigger something dire, they are going to tell you to stop exercising.

In my heart of hearts, I am convinced you could swim the OW race and, in fact, do anything you have been doing in the past with absolutely no threat to your health.

Call me a Long Q Interval Denier, if you must, but I do not believe there is anything dangerous going on in the heart of our Bobinator.

Bobinator
August 5th, 2011, 10:35 PM
Let me be the first to pose a possibility:

A false positive reading, triggered by something unrelated to your general heart health.

I think what Taruky was saying in his excellent reply is that doctors are so skittish about malpractice lawsuits these days that if there is even the most remote chance that exercise could trigger something dire, they are going to tell you to stop exercising.

In my heart of hearts, I am convinced you could swim the OW race and, in fact, do anything you have been doing in the past with absolutely no threat to your health.

Call me a Long Q Interval Denier, if you must, but I do not believe there is anything dangerous going on in the heart of our Bobinator.

Thank you for your kind words Jim.
I hope your prediction is true but I'm going to pursue the genetic testing route if my insurance allow me to. I feel like I'm fine too but this whole situation has taken my confidence away. I doubt I'd have much fun in the lake because I'd be afraid of what might happen.
According to almost everyone I've talked to I am probably in a low risk catagory. Most of the research is based on young (under21) people. Once you are past 40 your risk goes down according to SADS. I need to call my doc and find out what my # was.
I'm thinking pool racing might possibly be in my future but I'm doubting if I'll ever participate in ow again. At least my 20K team this summer went out in great style!!!! (national champs!)

gull
August 6th, 2011, 08:34 AM
Second opinions should always be encouraged. But finding an answer that is more acceptable to you than the one given by your electrophysiologist does not necessarily mean that it is more valid. And you should not assume that it is simply the threat of litigation that is responsible for his recommendation against strenuous exercise. The reality is that the risk of sudden death in long QT syndrome is real but impossible to quantitate precisely for any one individual. Even low risk does not mean zero risk.

Bobinator
August 6th, 2011, 05:45 PM
Second opinions should always be encouraged. But finding an answer that is more acceptable to you than the one given by your electrophysiologist does not necessarily mean that it is more valid. And you should not assume that it is simply the threat of litigation that is responsible for his recommendation against strenuous exercise. The reality is that the risk of sudden death in long QT syndrome is real but impossible to quantitate precisely for any one individual. Even low risk does not mean zero risk.

Knowing what you know about this condition what would you do if this happened to you? I'm not sure this is a fair question but again I have nothing to compare the risk to. Is it safer than swimming in the ocean with sharks? Driving on the freeway in lots of traffic seems to be risky but we all do it. I wish I had some tangible activity I could compare the risk against. I am probably thinking too much.

gull
August 6th, 2011, 06:12 PM
Knowing what you know about this condition what would you do if this happened to you?

If confirmed by genetic testing, I probably would not swim. Tough question.

gobears
August 6th, 2011, 06:23 PM
Even low risk does not mean zero risk.

Nothing is zero risk. Long QT or not.

gull
August 6th, 2011, 07:28 PM
Nothing is zero risk. Long QT or not.

Those individuals with long QT syndrome, compared to thoe without, are at increased risk for sudden cardiac death during strenuous exercise.

Bobinator
August 6th, 2011, 10:11 PM
I wonder if LQI patients are at a higher risk of sudden death even without exercise?
If I don't exercise will my heart weaken and succumb to the irregular rhythm easier than a conditioned, strong heart? All these type questions keep popping in my head.

gull
August 6th, 2011, 10:31 PM
During vigorous exercise hormones like epinephrine are released which can provoke arrythmias in susceptible individuals.

Exercise does not strengthen your heart, nor does lack of exercise weaken it.

Bobinator
August 6th, 2011, 10:46 PM
During vigorous exercise hormones like epinephrine are released which can provoke arrythmias in susceptible individuals.

Exercise does not strengthen your heart, nor does lack of exercise weaken it.

I thought the cardiac muscle was somehow strengthened through regular aerobic activity. Wow, I've been way off base for a long time about this.
I'm really starting to freak out now. I was feeling positive yesterday, today is becoming bleak. I guess I should just be doing easy lap swimming instead of actual timed sets. Maybe I should just take a walk tomorrow.

jim thornton
August 6th, 2011, 11:53 PM
Bob, Gull is a cardiologist with infinitely more expertise on this subject than laymen like me.

I am not sure exactly what he means about exercise not strengthening the heart, nor lack of exercise not weakening it.

In extreme weight lifting, the chamber walls of the heart clearly undergo enlargement, or hypertrophy, though apparently not of the same harmful sort seen in long time victims of high blood pressure.

Extreme endurance athletes, on the other hand, increase the interior volume of their heart pumping chambers, along with an increase in blood volume--one reason why resting heart rate in trained athletes tends to go down (they can move more blood with each single pump beat.)

Perhaps these adaptations do not qualify as "strengthening" the heart in some technical sense. But in the more commonly understood meaning of "strengthen," it does seem to me that exercise makes most hearts more efficient, resilient, and, well, stronger, than the unexercised heart.

Amy, I think, is correct in saying that there is risk to anything. Clearly, if the data indicated having this syndrome increases risk significantly, you shouldn't ignore it. On the other hand, I would love to see some actual figures. Not just Long Q's impact generally, but broken down by genetic subtype, the presence or absence of family history, the presence or absence of symptoms, etc.

Back doctors used to believe that herniated disks were the cause of excruciating back pain in many of their patients. The reason: many people complaining of excruciating back pain have herniated disks. However, some enterprising researchers decided to look at normal people without back pain. What they found was fascinating: virtually the same percentage of pain free individuals had herniated disks as those suffering hellacious symptoms.

I wonder how many people are going thru their lives, like you did until recently, completely unaware of having even a chance of Long Q syndrome. How many of these never develop problems and die eventually from unrelated causes, their Long Q never having been noted?

Gull, do you know the answer to Robin's question--i.e., how can she calculate her own risk?

Perhaps I am being hopelessly naive here, but one of the quotes that has helped me quite a bit in handling medical uncertainties is this one from the stoical philosopher, Marcus Aurelius, who lived long before human cardiovascular function was known in the slightest:

Never surpass the sense of your original impressions. Perhaps they tell you that a certain person speaks ill of you. That was their sole message; they did not go on to say that you have been harmed by him. Perhaps I see my child suffers illness; my eyes tell me so but do not tell me his life is in danger. Always keep to your original impressions; add no interpretation of your own and you remain safe. Or at the most add a recognition of the great world order by means of which all things come to pass.

For what it's worth, my eyes do not tell me that Bobinator even suffers illness; in no way do I fear that her life is in danger.


Keep swimming, tell the lifeguard and pool manager about your diagnosis when and if (a huge if, in my opinion) it is confirmed by genetic testing, and ask that they keep the AED handy (which they should be anyhow.) Tell your teammates, too, and maybe even ask the coach to take a quick course in how to use the AED.


If you develop an arrythmia, they can zap it back to normal and then you can decide whether it makes sense to continue in the sport. But I just don't think you should quit because of a theoretical elevation of odds of something you may or may not have, and which even if you do have, may or may not pose any risk to someone who has been active her whole life without any incident whatsoever so far.


That is my opinion!

gobears
August 7th, 2011, 09:32 AM
Very encouraging, Jim. Robin--this is an extremely frustrating diagnosis. I know what you're feeling. It sounds like we have similar situations.

My mom and dad are both still alive and healthy. My mom is in her mid 70's and my dad is going to be 83 in a couple of months. My dad still plays tennis twice a week and works two jobs. Neither of them (or ANY of our relatives) have had any problems that indicate heart issues. I have been extremely active and swimming most all of my life. I've never fainted or even had a dizzy spell while exercising.

To go into a doctor's office and be told that I am now this fragile creature that could fall dead to the floor at any moment was horribly frustrating, maddening and scary. Add the ironic twist of fate that the one activity I love more than any other is the one activity they say I shouldn't do--and this diagnosis just plain sucks.

Gull, if we sound frustrated with your answers it's because they are frustrating. I know you can't help that, but put yourself in Robin's place for a minute. Wouldn't you be a little dubious?

All the reading I did on long QT seemed to say that IF you have one of the genetic subtypes that has been linked to sudden cardiac death and IF you have had a previous episode, your risk of cardiac event is 50% higher than the normal person. Those are two big IF's.

Robin--go with what makes you comfortable until you get your test results back. You are really in kind of a holding pattern until then.

For me, once I found out I needed genetic testing, I decided to be careful with the swimming. As I swam and realized nothing had changed, I got more comfortable in the water. I didn't compete this summer but I did get to where I was comfortable pushing myself again.

Somehow your body has made it this long. Don't be too freaked out. Wait for your test to come back before deciding you have to be freaked out. I don't think you've suddenly become a fragile flower. Just listen to your body and take reasonable precautions like Jim suggested. You have to do what works for you. If you feel like taking a month off from swimming, do it. Look at this time like it's a temporary bump in your swimming career and don't feel like you have to make a long term decision right now.

Hugs to you,

Amy

Bobinator
August 7th, 2011, 09:34 AM
Thanks again jim.
I must be bi-polar. I retired to bed last night thinking I would quit swimming till the genetic test is done and finished. I got up this morning and decided I'm going to Forest Park and swim some laps. I'm not going to do the workout, just nice and easy freestyle laps and kicking. I guess this would also be a good opportunity to tell my team mates of my situation. I've been swimming at the Monon either alone or with my Monon buddies since this whole thing started. I'm not even sure Forest Park has an AED. I know for sure the Monon AED is currently outdoors in the water park. That's a little scary. The other realization I've made is that I need to get some other interests in my life. Almost all the friends I have are swimmers and we do swimming things together most of the time. In the case that I need to totally quit I'll have to find something or else be a lonely and bored old woman.

gobears
August 7th, 2011, 09:40 AM
But I just don't think you should quit because of a theoretical elevation of odds of something you may or may not have, and which even if you do have, may or may not pose any risk to someone who has been active her whole life without any incident whatsoever so far.

This is especially awesome, Jim. :applaud:

Bobinator
August 7th, 2011, 09:43 AM
Very encouraging, Jim. Robin--this is an extremely frustrating diagnosis. I know what you're feeling. It sounds like we have similar situations.

My mom and dad are both still alive and healthy. My mom is in her mid 70's and my dad is going to be 83 in a couple of months. My dad still plays tennis twice a week and works two jobs. Neither of them (or ANY of our relatives) have had any problems that indicate heart issues. I have been extremely active and swimming most all of my life. I've never fainted or even had a dizzy spell while exercising.

To go into a doctor's office and be told that I am now this fragile creature that could fall dead to the floor at any moment was horribly frustrating, maddening and scary. Add the ironic twist of fate that the one activity I love more than any other is the one activity they say I shouldn't do--and this diagnosis just plain sucks.

Gull, if we sound frustrated with your answers it's because they are frustrating. I know you can't help that, but put yourself in Robin's place for a minute. Wouldn't you be a little dubious?

All the reading I did on long QT seemed to say that IF you have one of the genetic subtypes that has been linked to sudden cardiac death and IF you have had a previous episode, your risk of cardiac event is 50% higher than the normal person. Those are two big IF's.

Robin--go with what makes you comfortable until you get your test results back. You are really in kind of a holding pattern until then.

For me, once I found out I needed genetic testing, I decided to be careful with the swimming. As I swam and realized nothing had changed, I got more comfortable in the water. I didn't compete this summer but I did get to where I was comfortable pushing myself again.

Somehow your body has made it this long. Don't be too freaked out. Wait for your test to come back before deciding you have to be freaked out. I don't think you've suddenly become a fragile flower. Just listen to your body and take reasonable precautions like Jim suggested. You have to do what works for you. If you feel like taking a month off from swimming, do it. Look at this time like it's a temporary bump in your swimming career and don't feel like you have to make a long term decision right now.

Hugs to you,

Amy

Thanks again Amy!
When I'm swimming I feel great and confident that I'm fine. During the time inbetween I start folding like a cheap suit.
It just amazes me that 20 years ago I could run a sub-3 hour marathon, did all these crazy triathlons pretty well, and all the time had a bad ticker. I'm either extremely lucky or mis-diagnosed. And wouldn;t you think the act of childbirth would cause cardiac arrest in a weak person. I had 3 kids over 9 lbs without pain drugs or anything. I would have thought that might have killed me. I don't know :( I'm going to go do some easy swimming again and hope I get the news about the genetic testing tomorrow.
Hey Amy, did they ever do an exercise stress test on you? The folk from SADS said it would be a good thing to do. They also said they should have done more than 1 ekg. Just wondering.
Hugs to you too!

robin

gobears
August 7th, 2011, 10:09 AM
Thanks again Amy!
When I'm swimming I feel great and confident that I'm fine. During the time inbetween I start folding like a cheap suit.
It just amazes me that 20 years ago I could run a sub-3 hour marathon, did all these crazy triathlons pretty well, and all the time had a bad ticker. I'm either extremely lucky or mis-diagnosed. And wouldn;t you think the act of childbirth would cause cardiac arrest in a weak person. I had 3 kids over 9 lbs without pain drugs or anything. I would have thought that might have killed me. I don't know :( I'm going to go do some easy swimming again and hope I get the news about the genetic testing tomorrow.
Hey Amy, did they ever do an exercise stress test on you? The folk from SADS said it would be a good thing to do. They also said they should have done more than 1 ekg. Just wondering.
Hugs to you too!

robin

Yes, my cardiologist had me do a stress test and he thought I was fine based on the fact that my QT interval shortens up great during exercise. The long QT intervals that were noticed on me were during rest.

And your questions are valid, IMO. I've also had three successful pregnancies. Women with LQTS are supposedly at greater risk during pregnancy. So, we both have no history, no family history and levels of activity and successful pregnancies way above the norm. I'm not sure you should be feeling like a defective creature at this point. Wait until you get your results back. Get a stress test. My motto for myself was to wait to panic until I KNEW I had something to panic about. (That doesn't mean I don't understand exactly how you feel). You will go back and forth from extreme stress to anger to denial to feeling ok. Hang in there.

jim thornton
August 7th, 2011, 11:27 AM
All the reading I did on long QT seemed to say that IF you have one of the genetic subtypes that has been linked to sudden cardiac death and IF you have had a previous episode, your risk of cardiac event is 50% higher than the normal person. Those are two big IF's.

I am not sure where Amy got this stat, but let us assume it is correct.

It sounds horrible, right?

A 50 percent higher than normal chance of a cardiac event! Lord Jesus, I will be lucky to wake up in the morning!

But before you start making plans to buy your cemetery plot, consider two additional bits of info:

1. Relative risk is different from absolute risk. Say there is a disease that kills 1 out of 1,000 people who have it. That's horrible for the one person, but, frankly, most who have it don't die. Your absolute risk from this disease is one-tenth of one percent. Okay, now, let us say that you have an additional risk factor that increases your odds of dying from this disease by a whopping 50 percent! Your relative risk is 50 percent higher than average. What does this mean about your absolute risk? Merely that your odds have gone from 1 out of a 1,000 to 1.5 out of a 1000. Drug companies play up relative risk all the time to convince people they are in great need of whatever product they are peddling. The truth is that if your relative risk for LQI is only 50 percent greater than the population at large, this should be a great comfort. Sudden cardiac death is not common. How many people do you know who have suffered it? I can count one. So maybe you are 50 percent more likely to succumb than the average bear. But the bottom line: it's still a very rare thing.

2. Amy said "cardiac event" not "cardiac death." The worst case scenario is that your heart, during strenuous exercise, goes into ventricular fibrillation, is unable to reset itself, pumps ineffectively, and you die. Who wouldn't be scared of this But the worst case is not necessarily the most likely scenario. Your heart could go into a bad rhythm, causing you to pass out, which I admit would be problematic in the water. But a teammate and/or lifeguard sees this happen and gets you out of the water quickly, and the heart resets itself with or without the assistance of an AED. (Your facility should have one of these nearby; if our little podunk Y has one, I am certain yours does, too.) Even more likely, you get lightheaded and sense an arrhythmia that lasts for a short while. (Note: everybody gets the occasional sequence of skipped beats, flutterings, etc. Don't worry about these. I am talking something much more dramatic.)

Bottom line: I absolutely, 100 percent understand your dilemma. You are not bipolar. You have been given a Sophie's Choice by the very well-meaning medical establishment. It makes eminent sense that you would be freaked out now. I am in total agreement with Amy's approach. Get additional information, i.e., genetic testing. Be reasonable in the pool for now, and let the life guards and teammates know the situation. I think that you, like Amy, will find that as more and more time passes without any incident, your comfort level will slowly creep back up.

What's the old quote? A ship is safe in the harbor. But that is not what ships are for.

Nor is it what Bobinators are for.

gull
August 7th, 2011, 12:06 PM
Assuming you have long QT syndrome, no one can tell you with certainty what will happen if you continue swimming competitively. This lack of certainty is frustrating but very common in medicine. Consequently, you should find a physician that you trust and follow his (or her)recommendations, which will be based on the literature, his experience, and his clinical judgment.

taruky
August 7th, 2011, 02:58 PM
Bobinator, I think Gull is more qualified than I to shed light on this, but let me try. First of all, be careful about opinions generated by what peope have "read". There are gigabytes of information out there that seem authoritative but are not. Let me restate what I said earlier; you do not have to have a genetic risk to develop "torsades de point", the fatal arrhythmia. The mechanism of sudden death can occur any time the QT is significantly prolonged, even if acquired. I cannot stress that enough. I'm not trying to convince you one way or the other, but you should have all the facts before making a decision.

As far as risks, here is the deal. Think of going out in the sun without su screen. Your risk of melanoma increases, especially with burns. The chance that you will get melanoma is still small, but instead of being that one in 10,000 of the general population that gets it you might be that one in 500 of folks who get too much sunlight. Does that make sense? The issue of whether to be scared or not depends on the person. If I tell you that there was a shark attack at a nearby beach, are you nervous going into the water? Some people freak out, others continue to surf comfortably. Really depends on the person.

gobears
August 7th, 2011, 03:13 PM
Bobinator, I think Gull is more qualified than I to shed light on this, but let me try. First of all, be careful about opinions generated by what peope have "read". There are gigabytes of information out there that seem authoritative but are not. Let me restate what I said earlier; you do not have to have a genetic risk to develop "torsades de point", the fatal arrhythmia. The mechanism of sudden death can occur any time the QT is significantly prolonged, even if acquired. I cannot stress that enough. I'm not trying to convince you one way or the other, but you should have all the facts before making a decision.

As far as risks, here is the deal. Think of going out in the sun without su screen. Your risk of melanoma increases, especially with burns. The chance that you will get melanoma is still small, but instead of being that one in 10,000 of the general population that gets it you might be that one in 500 of folks who get too much sunlight. Does that make sense? The issue of whether to be scared or not depends on the person. If I tell you that there was a shark attack at a nearby beach, are you nervous going into the water? Some people freak out, others continue to surf comfortably. Really depends on the person.

I understand this might be inherent to being in medicine (and having to give out unwanted and frightening diagnoses all the time), but sometimes medical people seem to lack the ability to really put themselves in the shoes of someone getting these diagnoses.

Yes. We get it. There is a risk - though no one can say how great. On paper it's been proven. Ok.

So, think about being over 45 with three successful pregnancies, a bunch of marathons or years of swimming at an elite level and intense activity levels for years after that. Think about how it is to not have symptom one of any kind of problem and to be told that suddenly you are this fragile creature who needs to live in fear of what might happen. Can you see how incredibly annoying, frustrating and creepy this diagnosis is? At this point in the lives of people like Robin and I, is there any greater danger of death from LQTS than there is of driving on the highway?

Can you really say you'd just up and quit swimming if this happened to you???

taruky
August 7th, 2011, 04:34 PM
I understand this might be inherent to being in medicine (and having to give out unwanted and frightening diagnoses all the time), but sometimes medical people seem to lack the ability to really put themselves in the shoes of someone getting these diagnoses.

Yes. We get it. There is a risk - though no one can say how great. On paper it's been proven. Ok.

So, think about being over 45 with three successful pregnancies, a bunch of marathons or years of swimming at an elite level and intense activity levels for years after that. Think about how it is to not have symptom one of any kind of problem and to be told that suddenly you are this fragile creature who needs to live in fear of what might happen. Can you see how incredibly annoying, frustrating and creepy this diagnosis is? At this point in the lives of people like Robin and I, is there any greater danger of death from LQTS than there is of driving on the highway?

Can you really say you'd just up and quit swimming if this happened to you???

Without a doubt I would quit swimming and find an activity carrying less risk. That is just me, and i would never impose my opinion on someone else. I'm not sure what you expect doctors to say or not say. Would you prefer that the EKG result not be divulged to the patient? Or the patient to be told " you have Long QT but don't worry about what it is"?

You are probably familiar with Pete Marovich, no? He had anomalous coronay arteries I think. Great athlete, no problems until he dropped dead well into retirement. Past health does not always predict future events.

Your argument about how death can happen from anything else is flawed. Yes, life can throw danger in our direction daily, via mundane and necessary activities. But it is simple math that the more risks you throw in, the greater the chance of death. If I do motocross jumping AND I am a police officer or fire fighter my risk of death is higher than either alone. Another way to think of it; since i could die in a traffic accident, does that make the risk of driving drunk meaningmess?

I personally try to limit myself to life's unavoidable risks. If swimming to someone is unavoidable or the equivalent of oxygen to him, by all means swim. If you can be happy in life finding other activities, quit. I love basketball but quit playing pickup ball because a sprained or broken ankle would be incompatible with my job in the ER. Simple as that.

gobears
August 7th, 2011, 05:04 PM
Without a doubt I would quit swimming and find an activity carrying less risk. That is just me, and i would never impose my opinion on someone else. I'm not sure what you expect doctors to say or not say. Would you prefer that the EKG result not be divulged to the patient? Or the patient to be told " you have Long QT but don't worry about what it is"?

You are probably familiar with Pete Marovich, no? He had anomalous coronay arteries I think. Great athlete, no problems until he dropped dead well into retirement. Past health does not always predict future events.

Your argument about how death can happen from anything else is flawed. Yes, life can throw danger in our direction daily, via mundane and necessary activities. But it is simple math that the more risks you throw in, the greater the chance of death. If I do motocross jumping AND I am a police officer or fire fighter my risk of death is higher than either alone. Another way to think of it; since i could die in a traffic accident, does that make the risk of driving drunk meaningmess?

I personally try to limit myself to life's unavoidable risks. If swimming to someone is unavoidable or the equivalent of oxygen to him, by all means swim. If you can be happy in life finding other activities, quit. I love basketball but quit playing pickup ball because a sprained or broken ankle would be incompatible with my job in the ER. Simple as that.

Didn't mean to antagonize. It just seems very easy to sit on the outside of a situation with dispassionate and clinical opinions. It's a whole different animal when you are going through it.

Like you said, it's a matter of personality and priorities. I have just found medical people to be very dismissive of the real personal struggle this situation causes when evaluating what should be done. The cut-and-dried easy answers seem dismissive, anyway. Apologies if I offended.

taruky
August 7th, 2011, 05:38 PM
Didn't mean to antagonize. It just seems very easy to sit on the outside of a situation with dispassionate and clinical opinions. It's a whole different animal when you are going through it.

Like you said, it's a matter of personality and priorities. I have just found medical people to be very dismissive of the real personal struggle this situation causes when evaluating what should be done. The cut-and-dried easy answers seem dismissive, anyway. Apologies if I offended.

No offense taken. I will tell you what I often tell parents when they cannot decide which option to choose or they waver on someting. "if it was my child, I...". That is my way of personalizing it. "If it was my child, I would not order a head CT for that goose egg on his forehead.". "if it was my child I would do the lumbar puncture". What you have to realize is that ANY advice given to a patient HAS to be documented and is potentially lawsuit evidence. If "off the record" a doctor says "Robin, I understand your love for swimming and think you should go for it, life is short anyways" that doctor is absolutely positively toast. A medical law rule of thumb; what is not documented is in the favor of the patient's recollection. What is documented is in the physician's favor. Now I suppose the doc could say one thing and document another, but that is pretty unethical.

aztimm
August 7th, 2011, 06:16 PM
I am not aware of any data to suggest that your level of conditioning affects your risk of sudden death in long QT syndrome. It is known that exercise can pose more of a risk in certain genetic subtypes than others.

I'm also interested in the genetic subtypes that are more prone to this than others. I had genetic testing done and mentioned it in my blog here (http://forums.usms.org/blog.php?b=16176). There's a couple of other things I see when looking at my genetic results, but I don't see a mention of Long QT at all (either positive or negative).

I have a history of sudden death in my family. But looking further back (getting the genetic results prompted me to do some ancestry research too), it wasn't as prevalent. According to the genetic results, I'm much more likely to have coronary heart disease.

If you know what I should look for in my raw DNA data, that would be handy.
I also plan to print out/bring some of this with me for my next routine doctor's visit.

jim thornton
August 7th, 2011, 06:52 PM
Google put thread-specific ads up here, and on a lark, I clicked on one that offers genetic testing. Kind of interesting overview of the problem (though who knows if it is accurate?):

http://www.genedx.com/ext_upload_files/patients_guide_lqt.pdf

A couple notes:



They say that if your insurance won't pay, they can give you a significant discount
Not sure why swimming, above all sports, seems to be the most dangerous, but it's probably because of the drowning risk. Then again, maybe it has something to do with strenuous exercise in the horizontal position? No joke intended. Perhaps the heart pumps slightly differently during sports where gravity is not a major factor.
They also say that sleeping with an alarm clock is potentially dangerous--not good, apparently, to be startled out of a deep sleep.

To our learned physicians, Gull and Taruky, I apologize if my posts here have seemed at all obnoxious in that "idiotic know-it-all" kind of way you no doubt see in patients all the time.

I don't mean to be obnoxious; I just empathize so strongly with the plight that Amy so eloquently described.

What would the downside be to them swimming the way have been but only in facilities with AEDs and qualified guards/coaches ready to snap into action if something dire did happen? I mean once the heart goes into ventricular fibrillation, can't it be stopped by timely application of a defibrillator? It's not instant death, is it? I mean you have a a minute or two to be revived?

My other questions:



Does lack of symptoms have no relevance to risk?
Does age at diagnosis have no relevance to risk? (Most people find out by age 20, don't they?)
Would an implanted pacemaker keep them safe--I know at least once friend who swims with a pacemaker.
Finally, in your example of melanoma, you cite 1 in 10,000 for most, but 1 in 500 for those who are exposed to the sun too much. I suspect you pulled these figures out for illustrative purposes only. But does anyone have risk figures for LQI? What percentage of the average population dies from sudden cardiac arrest? What percentage of the population of people with LQI dies from it?
Reading between the lines here, I get the idea that Bobinator is not sure she will live out the week. I just don't think her risk is that severe. Do you know any figures--or know where she could find any figures?

gull
August 7th, 2011, 07:14 PM
Great questions.

It would make sense to swim in a facility with an AED and personnel trained to use it. Coaches and teammates should be made aware of your condition.

Defibrillators are usually implanted in high risk patients--those with symptoms or a family history of sudden death.

Bobinator
August 7th, 2011, 11:23 PM
Google put thread-specific ads up here, and on a lark, I clicked on one that offers genetic testing. Kind of interesting overview of the problem (though who knows if it is accurate?):

http://www.genedx.com/ext_upload_files/patients_guide_lqt.pdf

A couple notes:



They say that if your insurance won't pay, they can give you a significant discount
Not sure why swimming, above all sports, seems to be the most dangerous, but it's probably because of the drowning risk. Then again, maybe it has something to do with strenuous exercise in the horizontal position? No joke intended. Perhaps the heart pumps slightly differently during sports where gravity is not a major factor.
They also say that sleeping with an alarm clock is potentially dangerous--not good, apparently, to be startled out of a deep sleep.

To our learned physicians, Gull and Taruky, I apologize if my posts here have seemed at all obnoxious in that "idiotic know-it-all" kind of way you no doubt see in patients all the time.

I don't mean to be obnoxious; I just empathize so strongly with the plight that Amy so eloquently described.

What would the downside be to them swimming the way have been but only in facilities with AEDs and qualified guards/coaches ready to snap into action if something dire did happen? I mean once the heart goes into ventricular fibrillation, can't it be stopped by timely application of a defibrillator? It's not instant death, is it? I mean you have a a minute or two to be revived?

My other questions:



Does lack of symptoms have no relevance to risk?
Does age at diagnosis have no relevance to risk? (Most people find out by age 20, don't they?)
Would an implanted pacemaker keep them safe--I know at least once friend who swims with a pacemaker.
Finally, in your example of melanoma, you cite 1 in 10,000 for most, but 1 in 500 for those who are exposed to the sun too much. I suspect you pulled these figures out for illustrative purposes only. But does anyone have risk figures for LQI? What percentage of the average population dies from sudden cardiac arrest? What percentage of the population of people with LQI dies from it?
Reading between the lines here, I get the idea that Bobinator is not sure she will live out the week. I just don't think her risk is that severe. Do you know any figures--or know where she could find any figures?



I lived through today jimby. I ended up swimming at Forest Park (LCM outdoors) and did a nice zen 1,500 followed by a super 1,000 (50's pull, distances swim) on a reasonable interval. True to form for this week I had lots of anxiety before getting in, once I took off I felt great, even with the beta blockers. I told several of my key team mates about the situation and we located the AED. If the genetic testing shows a high risk for me I will definitely not race and will probably quit swimming. If it shows a low risk I'm pretty sure I'll keep swimming with Nasti's but still not sure about racing. I feel like my real need is to be part of the group. I like to race but I'm sure I could live without it.
I am going to call the Doc's office tomorrow and ask about an exercise stress test. It makes sense to me although I am obviously not a medical professional. I sure do hope the insurance okay's the genetic testing and that it happens SOON! Not knowing anything at all is almost worse than finding out a bad outcome. I've already decided if I have to quit swimming I will start doing yoga regularly, take super long walks, and start playing flute/piccolo in the Carmel Orchestra. I will definitely have to go back on Adderall or Concerta to help me with my excess free-cycling energy!

swimshark
August 8th, 2011, 07:54 AM
I lived through today jimby. I ended up swimming at Forest Park (LCM outdoors) and did a nice zen 1,500 followed by a super 1,000 (50's pull, distances swim) on a reasonable interval. True to form for this week I had lots of anxiety before getting in, once I took off I felt great, even with the beta blockers. I told several of my key team mates about the situation and we located the AED. If the genetic testing shows a high risk for me I will definitely not race and will probably quit swimming. If it shows a low risk I'm pretty sure I'll keep swimming with Nasti's but still not sure about racing. I feel like my real need is to be part of the group. I like to race but I'm sure I could live without it.
I am going to call the Doc's office tomorrow and ask about an exercise stress test. It makes sense to me although I am obviously not a medical professional. I sure do hope the insurance okay's the genetic testing and that it happens SOON! Not knowing anything at all is almost worse than finding out a bad outcome. I've already decided if I have to quit swimming I will start doing yoga regularly, take super long walks, and start playing flute/piccolo in the Carmel Orchestra. I will definitely have to go back on Adderall or Concerta to help me with my excess free-cycling energy!

Just wanted to let you know that I'm thinking about you. Hang in there.

jim thornton
August 8th, 2011, 08:10 AM
I've already decided if I have to quit swimming I will start doing yoga regularly, take super long walks, and start playing flute/piccolo in the Carmel Orchestra. I will definitely have to go back on Adderall or Concerta to help me with my excess free-cycling energy!

Isn't Adderall, in essence, an amphetamine? Definitely check this out with your doctor!

Glad to hear you survived another day, Bob!

My prediction: you will be playing flute/piccolo at the funerals of your doctors, many, many decades from now!

no200fly
August 8th, 2011, 11:13 AM
Didn't mean to antagonize. It just seems very easy to sit on the outside of a situation with dispassionate and clinical opinions. It's a whole different animal when you are going through it.

Like you said, it's a matter of personality and priorities. I have just found medical people to be very dismissive of the real personal struggle this situation causes when evaluating what should be done. The cut-and-dried easy answers seem dismissive, anyway. Apologies if I offended.

I think this may be part of the problem. Doctors are there to be knowledgeable, skilled, impartial observers and advisors who can give reasoned opinions that are not colored by the unfairness of the facts.

That being said, I do wonder sometimes if a doctor would be more inclined to discuss options with Michael Phelps than he would with me. I would guess that the same opinion would be given, but there would be a more elaborate explanation of the risk so that Michael could weigh the risk/reward factors – given the fact that his livelihood is tied to his swimming.

I think most of our exposure to “cut-and-dried easy answers” from doctors is related to not so serious matters. When your shoulder hurts when you swim and the doctor tells you “well, then, don’t swim” it can be frustrating. But, in the end, I think we all want our doctors to be able to give us their impartial, reasoned opinions so that we can make our own informed decisions regarding our health.

taruky
August 9th, 2011, 10:46 AM
I think this may be part of the problem. Doctors are there to be knowledgeable, skilled, impartial observers and advisors who can give reasoned opinions that are not colored by the unfairness of the facts.

That being said, I do wonder sometimes if a doctor would be more inclined to discuss options with Michael Phelps than he would with me. I would guess that the same opinion would be given, but there would be a more elaborate explanation of the risk so that Michael could weigh the risk/reward factors – given the fact that his livelihood is tied to his swimming.

I think most of our exposure to “cut-and-dried easy answers” from doctors is related to not so serious matters. When your shoulder hurts when you swim and the doctor tells you “well, then, don’t swim” it can be frustrating. But, in the end, I think we all want our doctors to be able to give us their impartial, reasoned opinions so that we can make our own informed decisions regarding our health.

You are probably right, because Michael might have a personal sports medicine physician who gets paid megabucks to spend hours at a time with him.

Ponder this for a moment. How many of you have been displeased that a doctor did not give you enough of his/her time during a visit? Now how many of you have gotten upset waiting past your appointment time to be seen?

One may ask, then, why not give longer appointment times. The answer to that is twofold. One, economics. If you give half hour appointments for everyone you will go out of business quickly. That 15 minutes of education and reassurance is usually not reimbursed. Two, so you don't have to wait weeks to get an appointment. I'm sure many of you have had that "WTF" moment when you were told the dermatologist can see your changing mole in 4 weeks.

Unfortunately, things are only going to get worse as reimbursement rates lower and lower. Picture a family practitioner making $115K a year and seeing 30 patients a day. Do they take a pay cut or try to stuff in more patients? Who the hell would want to go to medical school and accumulate debt only to do that?

Never doubt that your doctor cares, because the overwhelming majority do. They do the best job they can within the framework set by the lawyers in government and the medical liability lawyers who suck the life out of them:)

pendaluft
August 9th, 2011, 11:06 AM
Well, that's a pressure we all feel.

As a pediatric subspecialist, I currently give new patients an hour -- and usually fill that time. My adminstration is trying to push that to 40 minutes. We are resisting but I don't know how successful we will be. Will patients feel short-changed with shorter appointments? Maybe - of maybe I am over estimating the value of the education I do.

Certainly to talk about a serious diagnosis, like the one in question here or (in my case) chronic lung disease, I would need a fair amount of time to do the job reasonably well.

Bobinator
August 9th, 2011, 11:50 AM
Well, that's a pressure we all feel.

As a pediatric subspecialist, I currently give new patients an hour -- and usually fill that time. My adminstration is trying to push that to 40 minutes. We are resisting but I don't know how successful we will be. Will patients feel short-changed with shorter appointments? Maybe - of maybe I am over estimating the value of the education I do.

Certainly to talk about a serious diagnosis, like the one in question here or (in my case) chronic lung disease, I would need a fair amount of time to do the job reasonably well.

interesting. At this point I am 1 week and 1 day out from my appointment. I have heard nothing from anyone. I still haven't recieved the result of my echo-cardiogram although I have recieved the bill. Perhaps no news is good news. I am still waiting to hear if my insurance company will pay for genetic testing. I presume the office is doing this. i hate this waiting.
I see over 750 students per week at my school. If I take over a week to grade an assignment I'd get fired. Oh, and the governer of Indiana thinks teachers are over-paid.

pendaluft
August 9th, 2011, 01:26 PM
interesting. At this point I am 1 week and 1 day out from my appointment. I have heard nothing from anyone. I still haven't recieved the result of my echo-cardiogram although I have recieved the bill. Perhaps no news is good news. I am still waiting to hear if my insurance company will pay for genetic testing. I presume the office is doing this. i hate this waiting.
I see over 750 students per week at my school. If I take over a week to grade an assignment I'd get fired. Oh, and the governer of Indiana thinks teachers are over-paid.

Call the office and ask for the results -- you have waited too long. Never feel bad about agitating to get your results; they can't submit a bill to your insurance company without the report so its safe to say its been done.

Good luck -- waiting is horrible.

taruky
August 9th, 2011, 02:12 PM
Well, that's a pressure we all feel.

As a pediatric subspecialist, I currently give new patients an hour -- and usually fill that time. My adminstration is trying to push that to 40 minutes. We are resisting but I don't know how successful we will be. Will patients feel short-changed with shorter appointments? Maybe - of maybe I am over estimating the value of the education I do.

Certainly to talk about a serious diagnosis, like the one in question here or (in my case) chronic lung disease, I would need a fair amount of time to do the job reasonably well.

Subspecialists can give an hour for a new patient, lol. Primary care physicians? Not so much.

ourswimmer
August 9th, 2011, 02:36 PM
interesting. At this point I am 1 week and 1 day out from my appointment. I have heard nothing from anyone.

Bobinator, I'm sure the recommendation to give up competing and swimming is right for some people, and it may be right for you. But if you need more information or counseling to understand that recommendation so that you can accept or reject it, then go ahead and ask. This thread has generated a lot of interesting information about what might or might not be wrong and about how to distinguish potential danger from a false alarm. Ask about the additional testing, such as the stress test gobears had. Keep asking until you get answers that address your questions, whether or not they are the ones you want in your heart to hear.

In my experience, a lot of doctors are more used to patients who would see advice not to exercise as a relief than to patients who would see it as a dismal curse. So they may not understand how difficult this uncertainty is for you.

aquageek
August 9th, 2011, 03:09 PM
Bobinator - I discovered this article today that made me [unfortunately] think of you and this thread:

http://www.nytimes.com/2008/07/28/fashion/28fitness.html

Bobinator
August 9th, 2011, 10:28 PM
Call the office and ask for the results -- you have waited too long. Never feel bad about agitating to get your results; they can't submit a bill to your insurance company without the report so its safe to say its been done.

Good luck -- waiting is horrible.

Thanks Pendaluft. I don't want to be naggish but my anxiety is starting to depress me. I have a short break tomorrow afternoon and I'll call them. Am I over-the-top if I ask them to e-mail my ekg to me. The SADS organization offered to have a Q-interval expert take a look if I could send it to them. I just don't want to piss them off.

Bobinator
August 9th, 2011, 10:32 PM
Bobinator, I'm sure the recommendation to give up competing and swimming is right for some people, and it may be right for you. But if you need more information or counseling to understand that recommendation so that you can accept or reject it, then go ahead and ask. This thread has generated a lot of interesting information about what might or might not be wrong and about how to distinguish potential danger from a false alarm. Ask about the additional testing, such as the stress test gobears had. Keep asking until you get answers that address your questions, whether or not they are the ones you want in your heart to hear.

In my experience, a lot of doctors are more used to patients who would see advice not to exercise as a relief than to patients who would see it as a dismal curse. So they may not understand how difficult this uncertainty is for you.

Thanks ourswimmer. I guess I'll call them tomorrow and try to do a follow-up appointment. The Dr. asked me if I had any questions. It's strange how the questions really don't pop into your head till the next day or so. I suppose it's some form of being shell-shocked.

Bobinator
August 9th, 2011, 10:43 PM
Bobinator - I discovered this article today that made me [unfortunately] think of you and this thread:

http://www.nytimes.com/2008/07/28/fashion/28fitness.html

That's a spooky article Geek. I've pretty much decided I'll never swim another open water race again.
The people at SADS told me the correlation with water is very strange. They have documented cases of a child walking in the water on a beach and dying of sudden cardiac arrest, kids in bathtubs, and divers too. It almost seems the water plays a bigger role than the exertion level. Sometimes I wish I could unplug my brain.

couldbebetterfly
August 9th, 2011, 10:55 PM
I read that article out of interest and took from it that its more the fear and panic of the water that can disrupt the heart than the exertion itself. Also the fainting when in the water bit was kinda scary.....

but......

you are a swimmer and don't (I assume) panic on a daily basis when you workout at the pool. And (I also assume that) there are a number of trained lifeguards at the pool, should you faint while swimming. And I would think that as an experienced swimmer, you know your body and would know when something isn't right and now given this diagnosis you would slow down or stop the workout if necessary.

Take it easy :) (easier said than done, I know) and hope those results come through soon for you!

gull
August 9th, 2011, 11:16 PM
Indianapolis has some of the finest electrophysiologists in the nation, including Dr. Douglas Zipes who literally wrote the book on electrophysiology.

Bobinator
August 9th, 2011, 11:36 PM
Indianapolis has some of the finest electrophysiologists in the nation, including Dr. Douglas Zipes who literally wrote the book on electrophysiology.

Hi Gull! Do you know how to get an appointment with Dr. Zipes? I was told he's not taking new patients.

Bobinator
August 9th, 2011, 11:38 PM
I read that article out of interest and took from it that its more the fear and panic of the water that can disrupt the heart than the exertion itself. Also the fainting when in the water bit was kinda scary.....

but......

you are a swimmer and don't (I assume) panic on a daily basis when you workout at the pool. And (I also assume that) there are a number of trained lifeguards at the pool, should you faint while swimming. And I would think that as an experienced swimmer, you know your body and would know when something isn't right and now given this diagnosis you would slow down or stop the workout if necessary.

Take it easy :) (easier said than done, I know) and hope those results come through soon for you!

Thanks couldbebetterfly! I am taking it easy in the water. I am starting to feel like I've tapered, will I guess I have in a way.

jim thornton
August 9th, 2011, 11:49 PM
Thanks Pendaluft. I don't want to be naggish but my anxiety is starting to depress me. I have a short break tomorrow afternoon and I'll call them. Am I over-the-top if I ask them to e-mail my ekg to me. The SADS organization offered to have a Q-interval expert take a look if I could send it to them. I just don't want to piss them off.

You paid for the test. It is absolutely your right to get a copy. If they get prissy about emailing it, ask them to put a copy in an envelope and arrange to go pick it up. I doubt they will get prissy, but if they do, they don't have any legal right to keep it from you.


The people at SADS told me the correlation with water is very strange. They have documented cases of a child walking in the water on a beach and dying of sudden cardiac arrest, kids in bathtubs, and divers too. It almost seems the water plays a bigger role than the exertion level. Sometimes I wish I could unplug my brain.

There are reasons to suspect that water exercise is different from land exercise. When that Stephen Blair study came out a few years ago, showing that swimmers had greater longevity than runners, even though swimmers were not as lean as the runners, he told me that he thought this was a fluke of relatively small portion of swimmers compared to runners in his data base (from the Cooper Center for Aerobics Research).

He did acknowledge, however, that swimming places different physiological demands on the body. Gravity does not impact swimmers as much, the body is in a horizontal rather than upright position, and moderate temperature water is much more suitable to cooling muscle heat than even cold air.

There is also the mammalian dive reflex, which Wikipedia describes thusly:

The mammalian diving reflex is a reflex in mammals which optimizes respiration (http://en.wikipedia.org/wiki/Respiration_%28physiology%29) to allow staying underwater for extended periods of time. It is exhibited strongly in aquatic mammals (seals,[1] (http://en.wikipedia.org/wiki/Mammalian_diving_reflex#cite_note-pmid2800051-0) otters, dolphins, etc.), but exists in a weaker version in other mammals, including humans. Diving birds, such as penguins, have a similar diving reflex. Every animal's diving reflex is triggered specifically by cold water contacting the face[2] (http://en.wikipedia.org/wiki/Mammalian_diving_reflex#cite_note-pmid636078-1) – water that is warmer than 21 °C (70 °F) does not cause the reflex, and neither does submersion of body parts other than the face. Also, the reflex is always exhibited more dramatically, and thus can grant longer survival, in young individuals.

The first step in the reflex:



Bradycardia is the first response to submersion. Immediately upon facial contact with cold water, the human heart rate slows down ten to twenty-five percent.[2] (http://en.wikipedia.org/wiki/Mammalian_diving_reflex#cite_note-pmid636078-1) Seals experience changes that are even more dramatic, going from about 125 beats per minute to as low as 10 on an extended dive.[1] (http://en.wikipedia.org/wiki/Mammalian_diving_reflex#cite_note-pmid2800051-0)[3] (http://en.wikipedia.org/wiki/Mammalian_diving_reflex#cite_note-pmid15233163-2) Slowing the heart rate lessens the need for bloodstream oxygen, leaving more to be used by other organs.

Again, I am just an armchair speculator here, but it would seem to me that if cold water on the face is capable of inducing dramatic plummets in heart rate, it must be impacting the heart's electrical system is some way. Perhaps those with Long Q have an electrical system that is already, in some sense, cranky--and this additional insult can be enough to tip it over the edge?

It would be interesting to see how much more common sudden drownings are in colder water.

Another world class researcher in your neck of the woods is a very nice guy at U Indiana, Dr. Joel Stager. He is a masters swimmer himself and an exercise physiologist (and parenthetically the guy who became famous for finding that chocolate milk is an ideal post workout recovery drink:(1) Karp, Jason R.; Johnston, Jeanne D.; Tecklenburg, Sandy; Mickleborough, Tim; Fly, Alyce; Stager, Joel M (2004). The Efficacy of Chocolate Milk as a Recovery Aid. Medicine & Science in Sports & Exercise. 36(5) Supplement:S126.)

Perhaps if you run into him at a meet in the future, you could ask him if he knows Gull's referral, Dr. Douglas Zipes. The combination of a cardiology researcher with expertise on a condition known to be particularly risky to swimmers, and an exercise physiologist and director of U. Indiana's Counsilman Center for the Science of Swimming, could make for a fascinating double-barreled study of this condition.

Bobinator
August 10th, 2011, 12:12 AM
You paid for the test. It is absolutely your right to get a copy. If they get prissy about emailing it, ask them to put a copy in an envelope and arrange to go pick it up. I doubt they will get prissy, but if they do, they don't have any legal right to keep it from you.



There are reasons to suspect that water exercise is different from land exercise. When that Stephen Blair study came out a few years ago, showing that swimmers had greater longevity than runners, even though swimmers were not as lean as the runners, he told me that he thought this was a fluke of relatively small portion of swimmers compared to runners in his data base (from the Cooper Center for Aerobics Research).

He did acknowledge, however, that swimming places different physiological demands on the body. Gravity does not impact swimmers as much, the body is in a horizontal rather than upright position, and moderate temperature water is much more suitable to cooling muscle heat than even cold air.

There is also the mammalian dive reflex, which Wikipedia describes thusly:

The mammalian diving reflex is a reflex (http://en.wikipedia.org/wiki/Reflex) in mammals (http://en.wikipedia.org/wiki/Mammal) which optimizes respiration (http://en.wikipedia.org/wiki/Respiration_%28physiology%29) to allow staying underwater for extended periods of time. It is exhibited strongly in aquatic mammals (http://en.wikipedia.org/wiki/Aquatic_mammal) (seals (http://en.wikipedia.org/wiki/Pinniped),[1] (http://en.wikipedia.org/wiki/Mammalian_diving_reflex#cite_note-pmid2800051-0) otters (http://en.wikipedia.org/wiki/Otter), dolphins (http://en.wikipedia.org/wiki/Dolphin), etc.), but exists in a weaker version in other mammals, including humans (http://en.wikipedia.org/wiki/Human). Diving birds (http://en.wikipedia.org/wiki/Diving_bird), such as penguins (http://en.wikipedia.org/wiki/Penguin), have a similar diving reflex. Every animal's diving reflex is triggered specifically by cold water contacting the face[2] (http://en.wikipedia.org/wiki/Mammalian_diving_reflex#cite_note-pmid636078-1) – water that is warmer than 21 °C (70 °F) does not cause the reflex, and neither does submersion of body parts other than the face. Also, the reflex is always exhibited more dramatically, and thus can grant longer survival, in young individuals.

The first step in the reflex:



Bradycardia (http://en.wikipedia.org/wiki/Bradycardia) is the first response to submersion. Immediately upon facial contact with cold water, the human heart rate (http://en.wikipedia.org/wiki/Heart_rate) slows down ten to twenty-five percent.[2] (http://en.wikipedia.org/wiki/Mammalian_diving_reflex#cite_note-pmid636078-1) Seals (http://en.wikipedia.org/wiki/True_seal) experience changes that are even more dramatic, going from about 125 beats per minute (http://en.wikipedia.org/wiki/Beats_per_minute) to as low as 10 on an extended dive.[1] (http://en.wikipedia.org/wiki/Mammalian_diving_reflex#cite_note-pmid2800051-0)[3] (http://en.wikipedia.org/wiki/Mammalian_diving_reflex#cite_note-pmid15233163-2) Slowing the heart rate lessens the need for bloodstream oxygen, leaving more to be used by other organs.

Again, I am just an armchair speculator here, but it would seem to me that if cold water on the face is capable of inducing dramatic plummets in heart rate, it must be impacting the heart's electrical system is some way. Perhaps those with Long Q have an electrical system that is already, in some sense, cranky--and this additional insult can be enough to tip it over the edge?

It would be interesting to see how much more common sudden drownings are in colder water.

Another world class researcher in your neck of the woods is a very nice guy at U Indiana, Dr. Joel Stager. He is a masters swimmer himself and an exercise physiologist (and parenthetically the guy who became famous for finding that chocolate milk is an ideal post workout recovery drink:(1) Karp, Jason R.; Johnston, Jeanne D.; Tecklenburg, Sandy; Mickleborough, Tim; Fly, Alyce; Stager, Joel M (2004). The Efficacy of Chocolate Milk as a Recovery Aid. Medicine & Science in Sports & Exercise. 36(5) Supplement:S126.)

Perhaps if you run into him at a meet in the future, you could ask him if he knows Gull's referral, Dr. Douglas Zipes. The combination of a cardiology researcher with expertise on a condition known to be particularly risky to swimmers, and an exercise physiologist and director of U. Indiana's Counsilman Center for the Science of Swimming, could make for a fascinating double-barreled study of this condition.

Hmmm, great idea Jimby!
I am a friend of Dr. Zipes daughter-in-law, I used to teach with her. She told me he's not accepting new patients. I just finished goggling him and according to his site on Krannert Center he is.
I have met Joel Stager a couple times at the IU meet. He's a nice person. I participated in his study at Nationals in Indy a couple years ago. I wonder if he still has my records? I'll e-mail him tomorrow.

gobears
August 10th, 2011, 09:00 AM
Hey Robin--

When I first started going through this, I actually contacted the woman who was filmed at short course Nationals talking about having been diagnosed with Long QT. She went to the Mayo Clinic where she was seen by Dr. Michael Ackerman (who is supposedly the leading Long QT researcher/doctor). That was where I was going to go if I was told I needed a defibrillator implant.

Do call and get your results. I had to finally call to get the doctor's office to take blood and send it in for the test. It was nice knowing that the genetic testing process was at least in motion. The waiting is difficult but worse when you don't know if anyone is doing anything productive.

I just came upon this article while googling Dr. Ackerman this morning. I haven't seen it before and am not even done reading it. But I'll link anyway.

http://www.physorg.com/news99834889.html

Take care and hang in there :)

Amy

gull
August 10th, 2011, 09:27 AM
Here is a link for genetic testing, which should be widely available:

http://www.familion.com/familion/

FYI I generally schedule patients for an office visit to discuss test results (like echocardiograms) in person rather than over the phone. Just a personal preference.

ourswimmer
August 10th, 2011, 10:09 AM
It's strange how the questions really don't pop into your head till the next day or so. I suppose it's some form of being shell-shocked.

Maybe in part, but I also think it's because the information is so new, and outside your own expertise. I often have to think about a problem for a while, and talk it over with other people who can offer fresh perspectives, before I figure out what questions I need to ask to understand or solve the problem. Now that you have some more information you'll be able to make the most of your next fact-finding appointment. Hope you can get it soon and that you and the doctor(s) can have a good talk.

vndad
August 10th, 2011, 10:30 AM
Bobinator - I discovered this article today that made me [unfortunately] think of you and this thread:

http://www.nytimes.com/2008/07/28/fashion/28fitness.html

I can't help but notice there is no female name on the short list of victims in that article. So if there is a significant gender difference (a straightforward Student's t-test will do), OP may take solace and continue her life-long swimming hobby with caution.

MickYoung
August 10th, 2011, 01:06 PM
Not really adding much, but as a 58 year-old, I expect to have roughly similar issues in the next coupla decades.

Bobinator, I want to thank you so much for posting this and motivating this excelent discussion. And thanks to all the thoughtful posters, too. Great stuff here.

Bobinator
August 11th, 2011, 10:09 PM
The latest update. One bit of great news and one not so great.

Good: I received a message after school from the Genetic Testing Company; my insurance will pay for 100% of the testing. ($5,400.00 or so) Gee, I'm so happy I didn't drop the premium policy last year. I almost did since I never go to the Dr. except for check-ups. This test alone will probably make-up the profit I would have gained by taking a lesser policy.

Not Good: My youngest daughter just flew in from Florida for a quick break before school starts (she goes to USF). I had an ekg scheduled for her today. She has Long Q Interval too. She didn't seem overly upset. The Dr. gave her the list of banned medications, I told her to just live normally till we get the genetic testing done. She was fine with that. She was a very good competitive swimmer till age 13 and then opted to run cross-country and track through middle and high school. She, like me has never had a symptom in her life.

My oldest daughter is getting an ekg on Monday. Now my concern is my son. He is rarely sick and never goes to the doctor. He's coming down from Chicago this week-end to visit Sarah. I'm going to see if the Med-Check Clinic does ekg's. If they do I will lure him there with beer and duck him in the clinic for an ekg before he knows what's happening. jk, but I'll get him there somehow.

I want to thank everyone who is following this thread for their kind thoughts, encouragement, and outstanding information and links. This thread is my outlet for venting and expressing my feelings about this situation. I really don't have anyone else I can talk to about this whole mess. I think the very few people I have told are somewhat freaked out and either think I'm exaggerating or just plain crazy. Either way I definitely feel like they don't want to hear about it so I'm zipping my lips.
I've tried to tell a couple of my swimming team mates just for safety purposes. They sort of acted like I was talking about a common cold and seemed to think it would be fine in a week or so. I'm not looking for sympathy or answers. I just want a few folks to know in case of an emergency situation should arise. Hopefully the great luck I've had for the last 55 years will hold out for at least 50 more years and there won't be a problem!
As far as my kids go I'm going to take up religion and start praying. We have all been so healthy and robust since forever. It's hard to imagine I have passed a rare and potentially serious condition to them. Obviously I know I didn't do this on purpose so I have no feelings of guilt, but sadness is what is eating through my soul at this point.

jim thornton
August 11th, 2011, 11:07 PM
We all pass on good and bad things to our kids, both thru our genes and our ways of acting.

I know for certain you have passed much more good than bad to yours. Keep the faith, Bob! It will be all right.

Bobinator
August 11th, 2011, 11:11 PM
We all pass on good and bad things to our kids, both thru our genes and our ways of acting.

I know for certain you have passed much more good than bad to yours. Keep the faith, Bob! It will be all right.

Thanks Jim. It's true, you can't pick your parents. The genetic ones at least.

ourswimmer
August 12th, 2011, 12:34 AM
I'm glad to read that you're getting more and better information, but sorry your teammates can't offer more sympathy. You have mine for sure.

pendaluft
August 12th, 2011, 09:50 AM
You are doing all the right things to get the best information for you and your family. With information, you can make the appropriate decisions.

Bobinator
August 14th, 2011, 10:18 PM
Here's a question for the medical professionals out there: Where does the faulty heart rhythm originate? The brain, a chemical reaction, the smooth cardiac muscle itself, or maybe in the nervous system. I'm still trying to figure this out and I don't understand where the breakdown begins. In essence I'm saying perhaps my heart is great, it's just some kind of faulty wiring job. Am I correct?

taruky
August 14th, 2011, 10:53 PM
Here's a question for the medical professionals out there: Where does the faulty heart rhythm originate? The brain, a chemical reaction, the smooth cardiac muscle itself, or maybe in the nervous system. I'm still trying to figure this out and I don't understand where the breakdown begins. In essence I'm saying perhaps my heart is great, it's just some kind of faulty wiring job. Am I correct?

You are correct Robin. Your heart muscle is probably as strong as can be. There are several potential origins of the long QT. It can be intrinsic in the heart itself, meaning the ion channels in the heart muscle cells which allow repolarization can be different than normal. Electrolyte imbalances and drugs can artificially cause the same ion channel problems. Sometimes it can be due to the nervous system. I sometimes see patients with high vagal tone, or high vagal nerve activity with QTs a bit prolonged. The vagal nerve is the parasympathetic (relaxing) nerve. I recognize these parents as the light headed, fainting types. It can also be the other way around where the long QT causes a really slow heart rate by blocking every other beat, and people will be light headed.

Now, I answered about where the long QT originates, but you asked specifically about the arrhythmia. Well, when the heart is beating fast (exercise, fear, etc.) there is a greater chance that one new depolarization from the atria will catch the ventricles partially depolarized, and as I explained earlier that can be a recipe for the crazy rhythm. You are better off either fully ready to accept the new depolarization or completely refractory.

Hope I answered your question, and Gull please chime in as you are more the expert.

Bobinator
August 14th, 2011, 11:04 PM
You are correct Robin. Your heart muscle is probably as strong as can be. There are several potential origins of the long QT. It can be intrinsic in the heart itself, meaning the ion channels in the heart muscle cells which allow repolarization can be different than normal. Electrolyte imbalances and drugs can artificially cause the same ion channel problems. Sometimes it can be due to the nervous system. I sometimes see patients with high vagal tone, or high vagal nerve activity with QTs a bit prolonged. The vagal nerve is the parasympathetic (relaxing) nerve. I recognize these parents as the light headed, fainting types. It can also be the other way around where the long QT causes a really slow heart rate by blocking every other beat, and people will be light headed.

Now, I answered about where the long QT originates, but you asked specifically about the arrhythmia. Well, when the heart is beating fast (exercise, fear, etc.) there is a greater chance that one new depolarization from the atria will catch the ventricles partially depolarized, and as I explained earlier that can be a recipe for the crazy rhythm. You are better off either fully ready to accept the new depolarization or completely refractory.

Hope I answered your question, and Gull please chime in as you are more the expert.

Hmmm, I am very ADHA (diagnosed) and a little jittery. I have never fainted in my life. I have been dizzy with a bad inner-ear infection, but not lately. Could my adhd be the origin of my long Q? I've always regarded adhd as a gift. It makes you work in unusual ways but with never ending energy!

gobears
August 15th, 2011, 08:46 AM
Good questions, Robin. I'm curious, for the medical people out there, about the differences between men and women and QTc intervals. I've read a few articles now that say QT intervals in men and women are different. It seems that women between the onset of menses and menopause have longer QT intervals regardless of treatments (except for LQTS2). It sounds like androgens have an effect on QT and women's hormones cause longer QT even with treatment.

I just read one article that explained that women make up 60-70% of new diagnoses of LQTS currently. I'm wondering if the "normal QT measurements" are based on what's normal for men. When you take an athletic woman and measure her against normal standards for men, I'm wondering if the same set of measurements should indicate the same diagnosis for both sexes.

From: http://emedicine.medscape.com/article/157826-overview#a0199


New cases of long QT syndrome are diagnosed more in female patients (60-70% of cases) than male patients. The female predominance may be related to the relatively prolonged QTc (as determined by using the Bazett formula) in women compared with men and to a relatively higher mortality rate in young men.

taruky
August 15th, 2011, 11:50 AM
Good questions, Robin. I'm curious, for the medical people out there, about the differences between men and women and QTc intervals. I've read a few articles now that say QT intervals in men and women are different. It seems that women between the onset of menses and menopause have longer QT intervals regardless of treatments (except for LQTS2). It sounds like androgens have an effect on QT and women's hormones cause longer QT even with treatment.

I just read one article that explained that women make up 60-70% of new diagnoses of LQTS currently. I'm wondering if the "normal QT measurements" are based on what's normal for men. When you take an athletic woman and measure her against normal standards for men, I'm wondering if the same set of measurements should indicate the same diagnosis for both sexes.

From: http://emedicine.medscape.com/article/157826-overview#a0199
Honestly I don't know the answer to your question. In pediatric and adolescent patients, I don't recall seeing a gender difference in normal QT ranges. I highly doubt gender differences have not been considered by the experts, though. These differences are probably small. In Robin's case, we really don't have the information that her cardiologist has. If her QTc is like 470, you might argue that maybe there is more fuss to this than necessary. If her QTc is like 540, then you can be sure this is not normal gender variation and is reason for concern. I would trust the experts who not only have a wealth of knowledge on the topic but also have all the details of Robins EKG available.

Robin, I don't know it ADHD per se widens your QT. ADHD stimulants, however, increase your risk of a dangerous rhythm in the context of prolonged QT.

Bobinator
August 15th, 2011, 11:53 AM
Good questions, Robin. I'm curious, for the medical people out there, about the differences between men and women and QTc intervals. I've read a few articles now that say QT intervals in men and women are different. It seems that women between the onset of menses and menopause have longer QT intervals regardless of treatments (except for LQTS2). It sounds like androgens have an effect on QT and women's hormones cause longer QT even with treatment.

I just read one article that explained that women make up 60-70% of new diagnoses of LQTS currently. I'm wondering if the "normal QT measurements" are based on what's normal for men. When you take an athletic woman and measure her against normal standards for men, I'm wondering if the same set of measurements should indicate the same diagnosis for both sexes.

From: http://emedicine.medscape.com/article/157826-overview#a0199

Hmmm Amy this is interesting. I wonder if we should start on testosterone? I have never taken any hormonal therapy for anything (birth control or menopausal) maybe that was a mistake.
If most hormones are secreted from fat can being fit and having very low body-fat ratio throw us into this? Lots of questions here.

Bobinator
August 22nd, 2011, 08:29 AM
Honestly I don't know the answer to your question. In pediatric and adolescent patients, I don't recall seeing a gender difference in normal QT ranges. I highly doubt gender differences have not been considered by the experts, though. These differences are probably small. In Robin's case, we really don't have the information that her cardiologist has. If her QTc is like 470, you might argue that maybe there is more fuss to this than necessary. If her QTc is like 540, then you can be sure this is not normal gender variation and is reason for concern. I would trust the experts who not only have a wealth of knowledge on the topic but also have all the details of Robins EKG available.

Robin, I don't know it ADHD per se widens your QT. ADHD stimulants, however, increase your risk of a dangerous rhythm in the context of prolonged QT.

I quit taking Concerta for adhd when I turned 45, not because of heart rhythm but just because I didn't want to be on any medication at all. My oldest daughter takes Adderol, I guessing she'll have to quit.

Bobinator
October 19th, 2011, 11:46 PM
An update on my LQT Journey:
First of all my original Doctor refused to do the peer review with my insurance company to enable me to get genetic testing and then dumped me due to non-compliance with meds. This really didn't bother me too much, Dr. P and I didn't seem to communicate very well so it was probably for the best.
I took Gulls advice and tried to contact Dr. Zipes. I managed to trade e-mails with the head of the department @ IU Cardiology, he recommended Dr. Chen. Today was my initial appointment with Dr. Chen! I was amazed by everything we accomplished during my appointment today! Believe it or not they have a deal with one of the genetic testing companies. They took the blood today and said I'd have the results in 3-4 weeks! I took an Ecko-exercise stress test. I stayed on 20+ minutes maintaining target hr for over 7 minutes. The tech said I was their record for the year so far. I could have gone much longer but the tech said we had gathered enough information. The bad news from the test is that my QT interval stays long while I exercise. The complete results will be available next week I guess.
I am currently wearing a 48 hour halter? moniter. If I experience any fast heartbeats, flutters, or heart pounding I'm supposed to note it on a log. Dr. Chen told me I should do anything I would normally do except swim with the device. I took a decent 45 minute run tonight and felt good. I sweat quit a bit and ended having the red lead slide off my chest. I hope it doesn't hurt the results.
I feel so much better now that I've made some progress toward learning about my LQT heart rhythm. After 2.5 months of dead-ends and disappointments I'm finally starting to get somewhere!

gobears
October 20th, 2011, 07:36 AM
Great news :applaud: That first doctor sounds pretty awful. If you paid for an echocardiogram, you should be able to get the results. Period. And what kind of credible doctor won't get you genetic test results for something as potentially serious? So glad you're rid of him.

I'm sure it feels so much better to be moving forward (instead of standing still). I wish you all the best with all of your results!

Bobinator
October 20th, 2011, 10:17 AM
More good news! The phone rang at 7:05 this morning; I'm on Fall Break so I was still asleep. It was Dr. Chen's office with the news that the echo-stress test was perfect! I am amazed by the speed this office delivers test results. Now I still know my Q interval is long during exercise but I think this is still good news. I can't wait to hear how this all fits together.
This is my 2nd day of the halter moniter. I haven't pushed the button yet so it will probably be a boring report. I'm planning another run today. I haven't showered since I put this thing on so it's a good thing I'm on break and no one except my family has to smell me! haha! I've heard Americans shower and bathe too much so maybe this will be good for my skin!

couldbebetterfly
October 20th, 2011, 02:51 PM
Glad to hear things are getting better for you! I hope you're proud of your record :applaud:
I'll be checking back for your next update - keep them coming:)

jim thornton
October 30th, 2011, 12:57 PM
Any further developments, Bobinator? This Dr. Chen and his staff sound like great people, especially when compared to the predecessor. My prediction continues to be this: your condition will prove to be much less worrisome than you have feared.

Bobinator
November 13th, 2011, 12:44 AM
Any further developments, Bobinator? This Dr. Chen and his staff sound like great people, especially when compared to the predecessor. My prediction continues to be this: your condition will prove to be much less worrisome than you have feared.

Hi Jim, I just saw this posting.
Right now I'm trying to figure out how to purchase 2 defibulators, one for Sarah and one for me. I may need to get one for Lindsay's baby when it arrives too. I'm trying to get the insurance company to pay for them since they're $1,200.00 or so apiece. I'll probably take Sarah and myself to Mayo Clinic whenever she gets a break from school, the guru of Long QT docs practices there. I've read that the more LQT patients a doc sees the less restrictive they usually are.
I haven't received genetic test results yet, probably a couple more weeks.
I'm still taking 12.5 mg. of the beta blocker and swimming normally. Sarah is living totally normal. I'm on a couple facebook groups and the SADS support group but when I think about this too much I get obsessive and crazy so I try not to visit the groups much. I think I'm going to do a scy meet or so. I'll probably just swim workout speed and have fun with the team. I want to do the 5K ow Nationals this summer, we are hosting them. I'm hoping for good news from the Dr. I may get Marty to kayak along side me in case I have a problem.