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

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

Bobinator — Sun, 13 Nov 2011 12:44:32 GMT

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.

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

jim thornton — Sun, 30 Oct 2011 12:57:17 GMT

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

Bobinator — Thu, 20 Oct 2011 10:17:00 GMT

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!

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

gobears — Thu, 20 Oct 2011 07:36:18 GMT

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!

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

Former Member — Thu, 20 Oct 2011 06:51:34 GMT

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:)

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

Bobinator — Wed, 19 Oct 2011 11:46:48 GMT

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!

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

Bobinator — Mon, 22 Aug 2011 08:29:19 GMT

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.

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

Bobinator — Mon, 15 Aug 2011 11:53:10 GMT

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

taruky — Mon, 15 Aug 2011 11:50:47 GMT

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: emedicine.medscape.com/.../157826-overview 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.

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

gobears — Mon, 15 Aug 2011 08:46:22 GMT

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

Bobinator — Sun, 14 Aug 2011 11:04:59 GMT

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!

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

taruky — Sun, 14 Aug 2011 10:53:56 GMT

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.

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

Bobinator — Sun, 14 Aug 2011 10:18:27 GMT

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

ourswimmer — Fri, 12 Aug 2011 12:34:47 GMT

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.

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

pendaluft — Fri, 12 Aug 2011 09:50:01 GMT

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.

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

Bobinator — Thu, 11 Aug 2011 11:11:31 GMT

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.

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

jim thornton — Thu, 11 Aug 2011 11:07:04 GMT

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

Bobinator — Thu, 11 Aug 2011 10:09:28 GMT

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.

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

Former Member — Wed, 10 Aug 2011 14:30:02 GMT

Bobinator - I discovered this article today that made me think of you and this thread: www.nytimes.com/.../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.

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

Former Member — Wed, 10 Aug 2011 13:27:53 GMT

Here is a link for genetic testing, which should be widely available: www.familion.com/.../ 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.

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

Bobinator — Wed, 10 Aug 2011 12:12:59 GMT

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 in mammals which optimizes respiration to allow staying underwater for extended periods of time. It is exhibited strongly in aquatic mammals (seals, 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 – 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. Seals experience changes that are even more dramatic, going from about 125 beats per minute to as low as 10 on an extended dive. 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.

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

ourswimmer — Wed, 10 Aug 2011 10:09:10 GMT

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.

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

gobears — Wed, 10 Aug 2011 09:00:51 GMT

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. www.physorg.com/news99834889.html Take care and hang in there :) Amy

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

Former Member — Wed, 10 Aug 2011 05:06:30 GMT

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.

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

Former Member — Tue, 09 Aug 2011 15:16:44 GMT

Indianapolis has some of the finest electrophysiologists in the nation, including Dr. Douglas Zipes who literally wrote the book on electrophysiology.