Long Q Interval Any swimmer's out there who have this?

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:

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

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.

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.

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?): www.genedx.com/.../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!

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.

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.

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.

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!

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.