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

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, 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.

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???

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.

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.

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.

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. 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.

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?

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 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.