tag:blogger.com,1999:blog-200106622011-06-08T08:32:54.515+02:00Patients' Views Of A Rare Heart DiseaseJon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.comBlogger1671100tag:blogger.com,1999:blog-20010662.post-13190794133577058782008-09-06T21:07:00.006+02:002008-09-07T09:38:41.778+02:00

A new study published in the September 2008 issue of the New England Journal of Medicine (NEJM)* indicates that that people who receive shocks from implanted defibrillators (ICD) are more likely to die later on. News agencies and newspapers around the world reported on these findings, which caused some unease among the long-QT syndrome community on the internet.I read the study's abstract. I

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-1437660759631555222008-08-20T20:52:00.003+02:002008-08-20T21:33:40.062+02:00

I got an interesting e-mail from a construction site manager today. She hired a young worker suffering from long-QT syndrome and asked for advice. Not only did the construction firm provide an automated external defibrillator (AED), but the manager also took a first aid course. I call that commendable and hope more companies follow that example.Of course, it is also up to long-QT syndrome

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-41930393115173915862008-08-06T21:39:00.005+02:002008-08-09T11:09:27.787+02:00

My tennis game went very well. We played doubles, so the pace was not as high as I expected. I used to play badminton doubles and in my memory, the rhythm was higher.Since I am right handed and my defibrillator is implanted on the left side, I did not feel constrained. But after a while of playing, I started feeling the defibrillator. I think it has to do with the action of throwing the ball in

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-14069635000568756312008-07-27T22:09:00.005+02:002008-07-27T23:24:29.798+02:00

One of my colleagues at work invited me to play tennis with him. I am a bit hesitant because of my defibrillator (ICD) and because tennis is a stop and go sport. Detection in my device is set at 200 beats per minute (bpm), meaning: Should my heart rate reach 200 bpm, my ICD will deliver a shock. Usually, the range is between 170 to 220 bpm depending on the patient's medical history and

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-87285904309281011812008-07-21T18:21:00.002+02:002008-07-21T18:27:25.126+02:00

Apple officially launched the iPhone in Switzerland this month. It is sold out already here, so Swiss fans have to wait up to two weeks to get their devices.I do not. Because I am a business journalist covering telecommunications, I got a test iPhone for one month.I thought it could be fun to compare a cult product such as the iPhone with another hightech device, my implantable cardioverter

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-46891340270439552162008-07-20T17:39:00.003+02:002008-07-20T18:41:59.530+02:00

Apple officially launched the iPhone in Switzerland this month. It is sold out already here, so Swiss fans have to wait up to two weeks to get their devices. I do not. Because I am a business journalist covering telecommunications, I got a test iPhone for one month.I thought it could be fun to compare a cult product such as the iPhone with another hightech device, my implantable cardioverter

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-68607865591121029762008-07-14T17:02:00.005+02:002008-07-14T18:14:12.002+02:00

My family and I are participating in an international study about the LQT3 type of long-QT syndrome. Until now, LQT3 is considered to be the most lethal form and the less treatable with Beta blockers. Usually, people with LQT3 are advised to have a defibrillator implanted, even when they show no symptoms.Recently, I was talking to one of the authors of the study. The first results now indicate

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-77067170597747665112008-07-03T21:27:00.004+02:002008-07-03T21:58:41.604+02:00

Google alert is a service which notifies its users about the latest web and news pages of their choice by email. When it was launched a few years ago, I created an alert searching Google news for "long QT syndrome". I remember getting a notification every fifth or sixth month only back then.Nowadays, I get three alerts a week at least. Most of them are about articles of local newspapers in the

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-39172742943718631782008-06-21T22:05:00.005+02:002008-06-21T22:57:24.312+02:00

Since June 1st, I am not taking anticoagulants ("blood thinners") any more. I am quite happy, becausea) my phlebitis (an inflammation of the veins) did not come back.b) I do not like to swallow too many drugs. I am on beta blockers already.In December 2007, one month after my defibrillator (ICD) was fitted, my left arm turned all purple and was swollen. My GP diagnosed phlebitis at a glance.

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-75239831422890802882008-06-12T17:35:00.005+02:002008-06-12T22:42:38.351+02:00

The EP Lab Digest magazine, a medical journal for electrophysiology in the US, made an interview with me for the June issue. The article is about why I started the long-QT syndrome blog and about patient support on the internet.EP Lab Digest put the interview online now. To read it, please click here.

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-82119162483923826722008-05-26T21:52:00.003+02:002008-05-26T22:24:59.190+02:00

The Zurich University Hospital and Switzerland's biggest telecoms provider Swisscom launched the campaign "electricity for life". 13 public phone booths owned by Swisscom in Zurich's main shopping mile will be equipped with Automatic External Defibrillators (AED).According to the hospital, one to two people die in Zurich's shopping mile each year from sudden cardiac death. In the whole of

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-64363236902924933152008-05-11T14:58:00.003+02:002008-05-11T15:13:46.234+02:00

I was asked to give an interview to the EP Lab Digest magazine, a medical journal for electrophysiology in the US. One of their editors asked me a few questions about my long-QT syndrome blog. The article will be published in the June issue of EP Lab Digest.It was an interesting experience for me. I am a journalist myself and usually I interview people. The questions were quite challenging. I

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-48265058005487057322008-04-30T21:32:00.004+02:002008-04-30T21:48:30.627+02:00

My cardiologist thinks that playing with the Wii is safe if the console is 30 to 50cm away from the defibrillator (ICD). Concerning the Wii Fit Balance Board, he will ask a specialist of Medtronic Switzerland next week.The question is whether the Wii Fit Balance Board is emitting its signals horizontally on the ground only or vertically as well. Should the latter be the case, the defibrillator

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-76916109691433267182008-04-29T14:58:00.007+02:002008-04-29T16:33:47.850+02:00

... is not as easy as I thought. Today, my fiancee and I bought the Wii Fit set. While standing on the Wii Fit Balance Board full of anticipation, she told me to mind my defibrillator. She was right. The Wii manual states:"The Wii console, Wii Remote and Wii Balace Board can emit radio waves that can affect the operation of nearby electronics, including cardiac pacemakers.+ If you have a

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-28331315295653737362008-04-19T18:44:00.004+02:002008-04-19T19:06:21.387+02:00

Tomorrow, I will leave Switzerland for the Flandern fields in Belgium and see the city of Ypres. The first gas attack occured there during Wolrld War One. I have two weeks of vacation and will spend a few days in Ypres with two of my friends who are intersted in history.I am a bit nervous because it is my first trip to a foreign country since I had my defibrillator (ICD) implanted. It is just

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-91935907426654662302008-04-10T20:41:00.004+02:002008-04-10T21:02:41.266+02:00

The medication Ranexa (ranolazine) is used for the treatment of patients suffering of chronic angina who have not achieved an adequate response with otherantianginal drugs.Researchers now found out that ranolazine significantly shortens the QT-intervall in patients with type 3 of long-QT syndrome (LQT3).People like me.Shortening the QT-intervall in LQT3 patients with drugs is a possible approach

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-49307247275657073332008-03-12T17:09:00.003+01:002008-03-12T17:27:47.252+01:00

Computer experts working for the Universities of Washington and Massachussetts succeeded to hack an implantable cardioverter defibrillator (ICD). They used the Medtronic Maximo DR VVEDDDR model #7278 ICD."After partially reverse-engineering the ICD’s communications protocol with an oscilloscope and a software radio, we implemented several software radio-based attacks that could compromise patient

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-88842460305199192542008-03-11T15:58:00.003+01:002008-03-11T16:21:05.439+01:00

Living with a defibrillator (ICD) is trickier than I thought. In only five days, I had three encounters of the kind:Anti-theft systems in shops: If you have an ICD, you are advised to pass anti-theft systems in shops very quickly. They emmitt high frequency radiation the ICD could interpret as arryhthmia and eventually deliver a shock. In Swiss shops, it takes about three to five seconds til the

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-54243829070786286522008-03-08T11:24:00.005+01:002008-07-03T22:25:35.179+02:00

I had my first semi-annual defibrillator (ICD) follow-up yesterday with my cardiologist. A specialist from Medtronic was also present. They put the device to the test by accelerating and slowing down my heart beat for a moment. It did not hurt, but it was unpleasant.The device is working very well. The lead's electrical performance of monitoring my heart beat and detecting lethal arrhythmias

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-46684491979252203972008-02-27T11:01:00.004+01:002008-02-27T11:10:44.637+01:00

I went to my GP again today for a follow-up of my phlebitis. It is a known complication if you have a defibrillator (ICD) or pacemaker fitted. The thing is, my left hand still is purple and slightly swollen. My GP thinks the moment I do not take the "blood thinner" mediaction any more, the whole arm will swell.Since it is not an option to remove the ICD, I have to get used to the idea to take "

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-35312516630430108282008-02-15T21:04:00.005+01:002008-02-27T11:01:39.158+01:00

My first defibrillator (ICD) follow-up with my cardiologist is scheduled for March 6th 2008. A specialist working for ICD manufacturer Medtronic will also be present. Both specialists will put the data my ICD collected in its first six months "serving" me to the acid test. Yes, I am a very special patient and will get all the attention. :-DHere in Switzerland, ICD surgeries are performed by

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-89197505683789209852008-02-02T10:03:00.000+01:002008-02-02T10:23:11.722+01:00

Here and now, we read about sportsman and -women collapsing and dying of sudden heart death. Researchers from Great Britain now report that an isolated corrected QT (QTc) interval below 500 miliseconds is likely to be benign in elite athletes. This means: Athletes with QTc of 440-490 ms may be able to compete in the absence of symptoms.However, the "significance of an isolated long-QT syndrome in

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-26756878017871274802008-01-26T13:23:00.000+01:002008-01-26T13:43:13.992+01:00

It seems my health insurance still does not know I am a heart patient and that I should be spared with unnecessary stress.... I got a request of payment by the hospital for my ICD surgery today. I thought my insurance took care of it on my behalf directly, as it is custom in Switzerland when the costs for medical treatment are higher than 10.000 Swiss francs (9000$, 4000£). It turned out they

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-79865649868837135142008-01-16T20:43:00.000+01:002008-01-26T13:37:12.025+01:00

An important part of my job as business editor is to meet Chief Executive Officers (CEO) and to visit companies. Today, I was invited to have an inside look at an important metal smelter in my hometown. The company is operating on a global scale and is processing precious metal melting stock for watch and medical industries.The tour included the hightech furnaces that emit magnetic resonance

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-9763626726580560982008-01-07T18:07:00.000+01:002008-01-07T18:14:33.310+01:00

According to German political magazine DER SPIEGEL, the European Union plans an agency for rare diseases. The goal is to pool the know-how of European universities, laboratories and hospitals and to put it at disposal of doctors and scientists.

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-52213019095549505922007-12-20T22:19:00.000+01:002007-12-20T23:09:10.427+01:00

I went to my electrophysiologist for the first check-up after the implantation of my defibrillator. It has been more than six weeks now since the surgery. I was relieved to hear that the device is working well, that there were no arrhythmias recorded, no shocks delivered and no pacing administered. The data also showed that I am responding well to beta blockers.Still, it seems the lead's

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-55527605501945038112007-12-11T19:20:00.000+01:002007-12-11T19:33:03.078+01:00

My left arm turned all purple and is swollen. My GP's diagnosis: phlebitis. In other words: I caught an inflammation of the veins. It is a known complication if you got a defibrillator implanted because the main vein is irritated by the lead. Of course, I am not thrilled at all.I am on anticoagulants now. So I have to take care not to cut myself and to carry a document of identification for oral

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-26750448633956925112007-11-29T21:04:00.000+01:002007-12-07T09:59:54.600+01:00

Forget about swim suit or Mr. Universe contests! We launch the the ICD (=implantable cardioverter defibrillator) scar contest. We are looking for the sexiest ICD scar.Send us your picture and (first) name to info@qtsyndrome.ch. It will be posted on this blog. I am willing to do the first step and post my fresh and very thin ICD scar.Jon's ICD scar.

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-22789191275427308152007-11-22T17:38:00.001+01:002007-11-22T17:42:42.175+01:00

Today is show and tell and I promise you it is WEIRD.So, my husband called me and said 'Honey, you got a sussy in the mail!'.(For those of you who aren't familiar with a 'sussy', it's a little surprise, something given for no particular reason or event, just a little gift to say 'I am thinking of you'. I've not heard the term outside of Texas, and only twice outside my own family. I digress.)And

Kathrynhttp://www.blogger.com/profile/04093099252113525395noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-25538572392605168622007-11-21T17:40:00.000+01:002008-01-26T13:37:43.503+01:00

Interesting.In my eMail exchanges with my electrophysiologist, I talk about "shocks" and "inappropriate shocks" when it comes to questions about my new friend, the implantable cardioverter defibrillator (ICD).On the other hand, my specialist writes about "delivering therapy" and "inappropriate therapy".It is a matter of opinion after all, is it not?PS. Do not worry. I have not been shocked yet.

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-72759291182348819252007-11-14T17:17:00.000+01:002007-11-14T17:55:29.262+01:00

It is now the second week I am living with my new friend, the defibrillator. The thing did not deliver an inappropriate shock yet, so my confidence in the technology is growing. The device seems to work perfectly and I almost do not feel it anymore.My defibrillator is programmed to deliver shocks after 5 seconds when a heart rate of 200 beats per minute is detected and to stimulate the heart when

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-54957746563254136042007-11-02T18:21:00.000+01:002007-11-02T20:33:57.476+01:00

One hour before the surgery. I am waiting inthe prep room.My fiancee calls me "bunny". Now she can say "bionic bunny" to me. The defibrillator is in and I am home again.The surgery went very smoothly. Actually, it was not as bad as I expected.I do not know yet whether it was the right decision to have an ICD implanted or not. To feel the device in the left of my chest is a bit weird, but I guess

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-34184289940544790342007-10-27T09:45:00.000+02:002007-10-27T09:56:35.239+02:00

Mael B. Mettler(1981 - 2007)My youngest brother Mael Benjamin Mettler died on Thursday morning while working on the computer. For me, there is no doubt that long-QT syndrome took him away from me. He chose not to take Beta blockers anymore and to live a "drug free" life. I have to accept his decision in its finality, although I will never understand it. I am very sad and cannot believe it.

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-89650469276277772072007-10-16T14:51:00.000+02:002007-10-16T15:07:01.353+02:00

That is excactly what I need two weeks before my defibrillator surgery: A press release by Medtronic Switzerland stating that they are calling back defect leads worldwide. Five deaths of ICD patients are associated to broken leads of the type Sprint Fidelis.The last few days, I felt quite comfortable with the idea of having a defibrillator. That has changed now. I am not so sure anymore.I sent an

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-23593099245040591882007-10-01T14:01:00.000+02:002007-10-01T14:22:50.805+02:00

Got word today from my arrhythmologist. My ICD surgery will take place on November 2nd 2007 at 9am (preparation) and noon (implantation).They will keep me one night at the hospital for observation.I agreed with the specialist that there will be no live test of the ICD by inducing an arrhythmia. He thinks my wish is justifiable.It seems that there are already discussions among ICD specialists

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-2265505060158557992007-09-29T17:32:00.000+02:002007-09-29T17:56:36.098+02:00

I decided today to get an ICD and applied for the surgery.I have been reading tons of medicals literature concerning the matter, talking to specialists here in Switzerland and in Italy, exchanging eMails with ICD patients and discussing the impacts with my future wife.The bottom line is: Only the ICD gives an almost 100% protection against sudden heart death, but it does not prevent arrhythmia,

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-60911936590511118362007-09-24T22:22:00.000+02:002007-09-25T16:04:32.326+02:00

This is my first attempt at blogging, so please bear with me as I will probably ramble. My name is Brian, I'm 25 and I live on Long Island, New York. I'd like to thank Jon for inviting me to be a contributor to his blog, as well as for all the work he puts in for the sake of Long QT awareness.I was first diagnosed with Long QT Syndrome in February of 2006, but the story begins much farther back

Brian Sutchnoreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-49891984700527550052007-09-21T20:06:00.000+02:002007-09-21T20:29:16.143+02:00

Tom Sutch is a young film maker who recently won the "Best First Film" award at the 2007 Long Island International Film Expo. His documentary, "Broken Hearts, Electric Shocks", shows his family's struggle with long-QT syndrome.Tom was so kind to put the documentary on YouTube. A review on this blog will follow.Broken Hearts, Electric Shocks (Part 1) Broken Hearts, Electric Shocks (Part 2)

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-55096602373792338732007-09-17T16:39:00.000+02:002007-09-17T21:39:55.313+02:00

The age of the Internet is without a doubt the best period to live in. If you have, say, a rare disease, you can find the leading specialists on Google and get in touch with them by e-mail. And because you are one of the rare patients to "research", they even answer and help you.On a social web network such as Facebook you can create a group for like-minded people and ask them for their opinion

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-83444657664405781622007-09-09T21:47:00.000+02:002007-09-09T22:09:35.674+02:00

I have two weeks vacation now. A good opportunity to contemplate my current situation and the possibility to have a defibrillator implanted. I am still waiting for recommendations of the long-QT syndrome experts in Pavia. Nonetheless, I had a few insightful discussions with my finacee. "What is the universe telling you?," she uses to say when a situation is unclear to her. Good question. I think

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-4872817417999925122007-08-27T10:39:00.000+02:002007-09-09T22:09:04.631+02:00

1. (My heart goes) Boum-BoumEnigmaVoyageur2. Find a way to my heartPhil Collins... but seriously3. Elektro KardiogrammKraftwerkTour de France4. Don't give upPeter GabrielSo5. Good doctorRobbie WilliamsRudebox6. BorderlineChris de BurghSpark to a Flame7. Bulletproof heartGrace JonesBulletproof heart8. Vide Cor MeumPatrick CassidyHannibal (Original Motion Picture Soundtrack)9. Unchain my heartJoe

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-54215129131030290332007-08-19T22:42:00.000+02:002007-08-20T21:21:23.083+02:00

Aug 1, 2007 was one of the longest and most stressful days of my life! I got up at 4am to make my 11 yearold son and 6 year old daughter French Toast for breakfast. They were scheduled for an epinephrine stress test that afternoon and were not to eat anything after 5am.My soon to be ex-husband, Gene took the day off work to take the two little ones to Oklahoma City for their stress test at the

diannehttp://www.blogger.com/profile/01779292218662278402noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-2977361438491755582007-08-13T21:45:00.000+02:002007-08-13T22:46:24.511+02:00

I am still not getting used to the idea to have a defibrillator implanted. I taped a device that was given to me to my left shoulder to see how it feels. It would be without doubt a constant reminder of long-QT syndrome.It is not the surgery or to have a foreign body in my shoulder and heart that bothers me. I am afraid of inappropriate shocks. There is a 20% chance that they occur. That is too

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-41615668933875581082007-07-31T23:32:00.000+02:002007-08-01T00:05:09.551+02:00

Today, I write about something less depressing than having defibrillators implanted. My fiancee (that is right: I am getting married!) recently introduced me to world of Facebook. Facebook is a so called social network website using the advantages of the Web 2.0. You can create an account for free and then edit your profile, get in touch with others, upload pictures and start message boards or

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-7389941758426123722007-07-26T16:34:00.000+02:002007-07-27T18:04:10.048+02:00

I must admit I am relieved a bit. The defibrillator specialist I talked to does not think my last incident was an arrhythmia. But of course, he does not rule it out 100%. That is why he wants me to do a brain MRI first to exclude a neurological cause for my disturbance of the vision.I was surprised how well he was informed about long-QT syndrome. I cannot longer claim the disease is unknown.I am

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-62005192395648888672007-07-24T16:02:00.000+02:002007-07-24T16:05:48.379+02:00

I am seeing the defibrillator specialist on Wednesday moring at 11am. He is said to be one of Switzerland's best.I checked out his website and am confident. He is young and looks trustworthy. I will keep you updated.

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-30458016336387572232007-07-22T00:38:00.000+02:002007-07-22T01:11:56.486+02:00

I esteem my new cardiologist for being an absolute professional and well informed about long-QT syndrome. Still, I had the impression that the chemistry between us was not quite right yet. I had to change my mind after my recent semi-annual check a few days ago.My cardiologist still thinks I experieced a self-terminated presyncope one month ago and urged me to reconsider an implantable

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-91205978442667776172007-07-17T02:03:00.000+02:002007-07-18T02:25:11.634+02:00

Jon, have you or anyone else thought about compiling our stories into a book and sending it to a publisher? We could use the proceeds to donate to SADS.org (Sudden Arrhythmia Death Syndrome Foundation). They would use it to promote SADS awareness, treatment, and fund research into the other 25% of the genetic causes. Or as a group we can start another foundation which I would love to see some

diannehttp://www.blogger.com/profile/01779292218662278402noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-37137165914178597812007-07-13T19:02:00.000+02:002007-07-18T20:03:30.246+02:00

After my stay in the hospital, I had to undergo some cardiological tests again. My cardiologist was not happy at all about the incident and does not exclude a self-terminated syncope. And because he is an absolute professional, he strongly advised me to reconsider an implantable cardioverter-defibrilattor (ICD).I must say I did not feel very well these last days. I had palpitations, a strange

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-25897493670260855992007-07-11T03:02:00.000+02:002007-07-17T02:43:26.592+02:00

Hi Group!I am so glad to find this blog is growing. I have tried to talk to some people about the trauma our family is going through. Yet for most, I lose them when I mention just electrical problem of the heart. I am so glad to share with other folks who are walking somewhere down the same path we are on. I asked to have my daughter and I added to the churches prayer list. I wrote down the

diannehttp://www.blogger.com/profile/01779292218662278402noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-29432349275386893532007-07-07T13:00:00.000+02:002007-07-07T13:34:22.086+02:00

A 14 year old girl died in Paris of sudden cardiac arrest while riding a roller coaster. The Swiss French newspaper "24 heures" used that sad incident as an opportunity to publish an article about the dangers of roller coasters. It is not the first time someone died in an amusement park. Back in 2006, a 12 year old boy died after a ride on a roller coaster in Disneyland Miami.The University of

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-41665979214469391312007-06-27T10:12:00.000+02:002007-06-27T10:40:57.954+02:00

I had to be brought to the hospital because I had a severe disturbance of vision all of a sudden when working in my office. It lasted for half an hour. When a strong spell of dizzyness came upon me as well, I had sent for an ambulance. Because of my history of long-QT syndrome, I did not want to take a chance.Much to my surprise, the paramedics as well as the doctors in the emergency room knew

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-24675144328240346022007-06-22T21:56:00.000+02:002007-06-22T22:13:09.731+02:00

Film student Tom Sutch lost his father and aunt to long-QT syndrome. When diagnosed as well with the disease, the 23 year old took his camera and started making a documentary about his family coping with long-QT syndrome.The 40 minutes film "Broken Hearts, Electric Shocks" will premiere next month at the Long Island International Film Expo in Bellmore. According to newsday.com, the documentary

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-29207121479511845552007-06-19T20:56:00.000+02:002007-06-19T21:10:14.873+02:00

Celine, a long-QT syndrome sufferer from France, started the first forum about the disease in French. She also was the first to put online a website about long-QT syndrome in French.The French message board can be found here.Up to date, the forum has 17 members. New members need to register if they like to post messages.As much as I love English, I am glad there still is a variety of languages on

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-66779645171672360102007-06-18T21:04:00.000+02:002007-06-18T21:51:26.004+02:00

My boss told me a sad story today. He participated in an Orienteering race last weekend. A runner, it seems a 61 year old man, suffered a cardiac arrest and died in the forest. Other runners tried to perform CPR on him, but in vain.Whether the man died of long-QT syndrome or not, we do not know and only can speculate.If someone dies unexpectedly in Switzerland, the police will investigate to rule

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-90329548778396196222007-06-12T11:23:00.000+02:002007-06-12T22:55:16.115+02:00

Web 2.0 describes an evolution of the Internet where users produce and publish their own content. As a economy editor covering technology, I am following this development very closely.YouTube and weblogs are examples for the Web 2.0. They provide new and exciting opportunities to communicate with your family, friends or target groups. Being present on YouTube means being present on the

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-56721012020879809772007-06-11T11:15:00.000+02:002007-06-11T11:28:09.481+02:00

Now, we long-QT people have our own day as well: June 13th is World Heart Rhythm Day. Heart rhythm disturbances such as long-QT syndrome can be fatal and strike young people. On Wednesday, World Heart Rhythm Day will be commemorated across the globe.This initiative was started in the United Kingdom by a group of charities supporting work into heart rhythm conditions.What you can do: Raise

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-38579075766926609862007-05-27T20:25:00.000+02:002007-05-27T20:28:00.872+02:00

Researchers of the Mayo Clinic College of Medicine in Rochester evaluated 176 patients previously diagnosed not long-QT syndrome. All these people were seeking a second opinion. Most of them were self reffered. It turned out that 73 patients or 41% did not have it all. The findings have been published in the May 22th, 2007 issue of Circulation.The study clearly shows that there is an increased

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-37651549222881230272007-05-18T14:11:00.000+02:002007-05-18T14:20:46.574+02:00

A diagnosis with long-QT syndrome should not be taken lightly. Lifestyle adjustments may impose. In a presentation, Dr. Urs Bauersfeld, Head of the Division of Cardiology of University Children‘s Hospital Zurich, listed important changes that should be considered by patients with long-QT syndrome:+ Avoidance of potentially triggering events (such as startle, exhaustion) of syncope or sudden death

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-71173070862355041282007-05-10T10:40:00.000+02:002007-05-10T10:46:46.424+02:00

I am less than 24 hours out of surgery to replace my ICD and I wanted to post to give you an idea of what it is like. This was my first surgery in Norway, and I wasn’t sure what to expect. My two previous surgeries were in America with my HIGHLY trained Electrophysiologist, whom I trusted completely. So, when I moved to Norway, I was a bit unsure of the care I would receive.It turns out, I

Kathrynhttp://www.blogger.com/profile/04093099252113525395noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-82244804183979743612007-05-08T13:00:00.000+02:002007-05-08T13:07:13.693+02:00

Hi everyone. I’m Kathryn and I have Long QT Syndrome. I’ve lived with this disease my entire life, but have only known about it for the last 8 years. This is the story of how Long QT has affected my family. Long QT strikes different families in different ways. Our family calls it the silent killer. The first victim was my cousin Chrissy. She was 24 years old, had just had a baby, and around

Kathrynhttp://www.blogger.com/profile/04093099252113525395noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-11061153527583439472007-05-07T20:39:00.000+02:002007-05-07T22:43:01.013+02:00

The claim of the QTsyndrome.ch website is "To spread the word of long-QT syndrome". It has always been our ambition to spread the word on the Internet worldwide, above all with the Frequently Asked Questions (FAQ) about long-QT syndrome. To do so, English is the first choice to communicate with the world. But of course, English is not spoken and understood in every corner of the world. That is

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-64610185607084508202007-05-04T19:57:00.000+02:002007-05-04T21:23:36.632+02:00

In this day and age of instant information via the internet, why do doctors continue to treat so called "rare" diseases as unimportant for them to look for in their patient population? My daughter had severe (and now we know life threatening seizures) for over a year and was seen by numerous doctors, hospitalized both locally and at OU Medical Center Epilepsy Department for a week, yet no one

diannehttp://www.blogger.com/profile/01779292218662278402noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-15792751328909045622007-04-30T21:30:00.000+02:002007-04-30T21:51:44.553+02:00

Professor Silvia Priori is one of the few, if not the only, leading female researcher in the field of long-QT syndrome. In an interview for the 10th anniversary of the QTsyndrome.ch website, I asked her:Is it hard for a woman to prevail in the men’s world of science?Her answer is touching, because it is very honest, and at the same time upsetting and somehow not surprising at all:"I have never

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-8613711562746331342007-04-23T17:37:00.000+02:002007-04-30T21:45:00.772+02:00

For patients with cardiac arrests it is crucial for their survival that the emergency chain works. This means in the first place that from first aid to transport to the hospital til admission in the hospital, everything has to work smoothly and without losing precious time.One of the reasons why I survived my cardiac arrest due to long-QT syndrome is that the emergency chain worked perfectly,

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-58541357745645662852007-04-16T15:45:00.000+02:002007-04-16T15:51:05.451+02:00

Here is the answer I got from the long-QT syndrome specialists of the University of Pavia in Italy concerning wearing contact lenses and oculocardiac reflex:"The reflex you mention is elicited applying pressure to the eye balls. It is a vagal reflex used to stop certain types of supraventricular arrhythmias. It has been hypothesized that it might be related to sudden death in infants but not

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-35927703633131798182007-04-09T16:24:00.000+02:002007-04-09T16:37:22.275+02:00

Thanks to fellow long-QT syndrome patient Bionic Roadrunner, we now know how the phenomenon I described in my last post is called. We are talking about oculocardiac reflex or Aschner reflex. According to Wikipedia, this reflex is caused by a decrease in pulse rate associated with traction applied to extraocular muscles and/or compression of the eyeball.Now the question is whether contact lenses

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-72278776304357222542007-04-06T12:02:00.000+02:002007-04-06T12:20:55.353+02:00

I went to the optician today to get contact lenses. It is the first time I am trying an alternative to my glasses.You could imagine how surprised I was when my optician started asking me about blood pressure and heart diseases. It seems that in 1 of 1000 cases, people pass out when they put in lenses. The same can happen to some people when they clean their ears with a Q-tip. It has to do with

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-84125958548548486372007-04-02T11:46:00.000+02:002007-04-02T11:49:08.125+02:00

Yesterday's post was an April fool's day hoax. Of course, long-QT syndrome remains long-QT syndrome.

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-12299641468435371262007-04-01T10:04:00.000+02:002007-04-01T10:14:11.812+02:00

The 2nd International Long-QT Syndrome Symposium decided today April 1st at a meeting in Copenhagen/Denmark to rename long-QT syndrome to long-TQ syndrome."QT syndrome phonetically resembles too much to cutie syndrome," said Dr. April Shertz of the university of Biel/Switzerland. "We all know the symptoms are not cute at all."The change will be effective from January 1st 2008. Long-QT syndrome

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-17186142624267054392007-03-29T16:36:00.000+02:002007-03-29T17:14:00.418+02:00

Once again, it is the Americans against the Europeans. The American Heart Association (AHA) has updated their recommendations for preparticipation screening for cardiovascular abnormalities such as long-QT syndrome in competitive athletes, with little changing from the 1996 prescreening statement. The AHA still does not believe it practical or financially feasible to support a large-scale

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-14095193486718813462007-03-19T18:28:00.000+01:002007-03-22T09:24:08.072+01:00

People like Silvia Priori, Peter J. Schwartz, G. Michael Vincent, Mark Keaton and Hugues Abriel are leading reseachers in the field of long-QT syndrome.They dedicate their professional life and passion to a rather unknown disease. It is thanks to them that we know how to diagnose and treat long-QT syndrome. And let us be honest: There is definitely more fame in researching a "popular" disease

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-90131720562288903012007-03-12T20:09:00.000+01:002007-03-12T20:41:45.960+01:00

Since a member of the Swiss parliament almost died of a cardiac arrest and has been brought back to life thanks to an automated external defibrillator (AED), the dicussion about AEDs in on in Switzerland.Now, the Grand Council (the legislative branch of the canton of Berne) is considering to install an AED between the parliament buildings in the city of Berne. The location is well chosen, because

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-42453960615146405042007-03-06T11:18:00.000+01:002007-03-06T11:46:02.390+01:00

My friend Hugues, researcher at the University of Lausanne in Switzerland, had his five minutes of fame in the news of Swiss French TV yesterday evening. The news reporter interviewed him and his colleague Chin B. Eap about a study both have published in "Clinical Pharmacology & Therapeutics".The study performed on 179 patients shows that methadone could prolong the QT-interval on the ECG and

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-38606523402116737192007-02-26T16:07:00.000+01:002007-02-26T16:30:49.646+01:00

It is not unusual that patients who have been diagnosed with long-QT syndrome after a cardiac arrest or an arrhythmia experience panic attacks - especially children and teenagers. It is important to deal with those panic attacks, because they have the power to take control of a person.I had panic attacks by the age of 17. I survived a cardiac arrest and was diagnosed with long-QT syndrome two

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-36368960097680000082007-02-18T10:45:00.000+01:002007-02-18T11:08:16.656+01:00

My friend Hugues, who is reseraching long-QT syndrome at the University of Lausanne in Switzerland, is a dutiful guy. Before he went on his well deserved vacation, he sent me an updated list of drugs found on the Swiss market that prolong the QT-interval. I put it online on the QTsyndrome.ch website.That really can happen: You take certain drugs and you acquire long-QT syndrome. Or you have

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-74432608950914095442007-02-05T21:31:00.000+01:002007-02-05T22:10:13.584+01:00

In my country, foundations and organizations act discrete and in the background. All the more surprised was I when I found out the Swiss Heart Foundation is running a nationwide campaign for CPR and against sudden heart death.In short spots on Swiss TV, it is shown how to administer CPR, recognise symptoms of cardiac arrest or heart attack and how to call for an ambulance.Furthermore, the Swiss

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-58230297714839346162007-01-27T11:10:00.000+01:002007-01-27T12:43:45.658+01:00

Michaela Gagne is representing Massachusetts in this year's Miss America Pageant. She was diagnosed with long-QT syndrome in high school and is living with an implanted defibrillator.Michaela said to the press that she will not hide the scar on her chest during the swimsuit competition. That is very coureagous! Also, she will use the event as a platform of heart health. The public attention

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-37658260449511754742007-01-24T16:43:00.000+01:002007-01-24T16:47:12.441+01:00

My LQTS story is a bit like a roller coaster. The road has been and still is up and down. For years, I worried about my syncope episodes, never knowing when the next one would come and if it would be my last one, always hoping that some day the doctors would find an answer to my problem. Finally, while on a monitor, I passed out one night. However, by some kind of miracle, I survived what was

Silver Arrowhttp://www.blogger.com/profile/05939770968031452269noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-81860134825888580772007-01-22T17:09:00.000+01:002007-01-22T17:55:32.831+01:00

I had my semi-annual heart check today. I was entitled to the whole program: resting ECG, exercise stress ECG (see picture above) and holter ECG. Half a year ago, I started taking my new beta blockers. So today, my doctors wanted to find out whether the new drugs were working or not.Everything is perfect. QT-interval still is over 500ms, but came down a bit. Only my recovery time after the

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-2867327480810280862007-01-21T18:11:00.000+01:002007-01-21T23:11:14.602+01:00

Here is an updated list (Thank you, Google alert):Michaela Gagne (Miss Massachusetts for the 2007 Miss America Pageant); diagnosed with long-QT syndrome in High School.Steve Konowalchuk (retired Colorado Avalanche forward); diagnosed with long-QT syndrome in 2006.Kayla Burt (retired University of Washington Women’s basketball player); diagnosed with long-QT syndrome in 2002 after a acrdiac

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-75340881773339235692007-01-20T10:59:00.000+01:002007-01-20T11:50:30.079+01:00

I am all excited! I had an encounter with history today. My dear highschool friend Andre, who is a librarian, sent me a copy of what is believed to be the first description of long-QT syndrome in medical literature. Andre found it in a library in Germany.The author is Friedrich Ludwig Meissner, a renowned German doctor living in the 19th century. In his book "Taubstummheit und Taubstummenbildung"

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-60336803710687854202007-01-11T18:30:00.000+01:002007-01-11T18:38:41.911+01:00

I had a strange dream last night: My cardiologist was telling me I had to take a new superduber Beta blocker with better benefits for patients.But a box with 100 pills would cost 570 Swiss francs instead of 57 francs...

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-52176739172014116232007-01-10T14:49:00.000+01:002007-01-18T10:51:42.660+01:00

I got a challenging request by email today. The sender asked me whether I could send him a list with famous people who have long-QT syndrome.I was tempted to answer: "Me included?"But let us put the jokes aside. Here is the list:Steve Konowalchuk (retired Colorado Avalanche forward); diagnosed with long-QT syndrome in 2006.Kayla Burt (retired University of Washington Women’s basketball player);

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-64836680443985128442007-01-05T21:39:00.000+01:002007-01-06T10:40:53.586+01:00

Rule #1: You never celebrate an anniversary without presents. For QTsyndrome.ch's 10th birthday, I have some special T-shirts printed that are commemorating the event. The German company that is making them sent me a preview today.You are asking who will get the T-Shirts? Pssst, that is a surprise...

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-88566195621489518962007-01-03T16:01:00.000+01:002007-01-06T10:46:54.747+01:00

What does it mean to live with long-QT syndrome nowadays?In the context of QTsyndrome.ch's 10th anniversary this year, we would like to invite long-QT syndrome patients around the world to share their experiences and emotions on this weblog.All you have to do is to email us and you will be invited to post your thoughts on the long-QT syndrome blog. We will "employ" you until December 31th 2007.

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-59198516080382751632006-12-30T12:14:00.000+01:002006-12-30T12:31:21.483+01:00

A new study published in the The New England Journal of Medicine indicates that women are more likely than men to carry and to pass on mutant genes that cause long-QT syndrome. Well, at least when it comes to the types 1 and 2.The European reasearchers found the genes that cause long-QT syndrome are more likely to be passed to daughters than to sons. And that women are more likely than men to

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-24140832672348122172006-12-27T21:26:00.000+01:002006-12-29T09:20:40.459+01:00

We have completed the new QTsyndrome.ch design for the website's 10th year anniversary in 2007. We will put it online in the course of the next year.Click here for a preview and leave me your comments, please.

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-23532472181340520182006-12-25T15:35:00.000+01:002006-12-25T15:36:55.917+01:00

Merry Christmas to you all!Thank you very much for visting the QTsyndrome.ch site and blog.

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-17455538168711924692006-12-22T20:57:00.000+01:002006-12-22T21:13:24.644+01:00

Just came back from a trip to Edinburgh with my girlfriend. I have friends in the Scottish capital city I see for a week every December. We can stay in their guest room, so I do not have to pay for a hotel.It is a two hour flight from Geneva to Edinburgh. I am not afraid of flying and never had a "onboard problem" because of my heart disease.I am not restricted of flying by my doctors. But one

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-19603827008671500962006-12-14T19:10:00.002+01:002006-12-14T21:21:50.644+01:00

The QTsyndrome.ch website will be online for 10 years in 2007. We decided to celebrate the 10th anniversary with numerous online events next year. There will be a complete redesign of the site accompanied by posts and articles on this blog showing how QTsyndrome.ch and knowledge about long-QT syndrome evolved since 1997.

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-29125687034150575092006-12-12T13:59:00.000+01:002006-12-13T14:47:42.292+01:00

My pharmacyBecause I only had 10 beta blocker (for the insiders among you: Beloc Zok 100mg) pills left, I went to my local pharmacy to get a new box today. An important part of Beta blocker logistics here in Switzerland is to know when the date of your prescription is running out.In my country, you need a prescription issued by your doctor for strong medication like beta blockers or antibiotics

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-31491416030300065932006-12-05T17:54:00.000+01:002006-12-05T17:59:46.849+01:00

The first anniversary of the long-QT syndrome blog has not gone unnoticed in the Swiss blogosphere. Read this.Thanks to Matthias for the congratulations.

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-24030937864604039452006-12-04T21:31:00.000+01:002006-12-05T17:59:21.061+01:00

I just realised that as for this month, I have been blogging for a year. The statistics say more than 5100 visitors have been reading the long-QT syndrome blog so far. At least, that is more than one a day. :-D The avarage visit length is 1 minute 41 seconds. Who knows, maybe I should write longer posts?55 comments have been left, among them a few challenging ones (thank you, Bionic Roadrunner).I

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-51965385446071724292006-11-30T22:10:00.000+01:002006-11-30T22:28:58.733+01:00

Has it been six months already? I got the appointment today for my next semi-annual heart check. It is scheduled for January 22nd 2007.

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-91230692710703550962006-11-28T22:48:00.000+01:002006-11-28T23:00:11.270+01:00

Yesterday was my American girlfriend's (aka The Schnubbu) 28th birthday. My gift to her was a prolonged weekend in Paris.As we were walking down a long street towards a church in the 12e arrondissement, we crossed three French guys carrying a coffin.My first thought: "An American In Paris and A Coffin In Paris."My second thought, all the long-QT syndrome patient: "I hope this is not a bad omen."

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-82795995404174331782006-11-22T17:05:00.000+01:002006-11-22T17:43:24.110+01:00

The Swiss Parliament has an external defibrillator. Recently, it even saved the life of a Member of Parliament who collapsed while giving a speech. She had a cardiac arrest and was electroshocked back to life by another Member of Parliament who is a trained physician.Today, Switzerland's biggest newspaper BLICK revealed that the defibrillator is hard to find if there is an emergency. The reason:

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-52228683895878445692006-11-20T21:06:00.000+01:002006-11-24T09:24:59.334+01:00

Hugues in his laboratory.Today, I went to the University of Lausanne to see my friend Hugues. He is a trained physician and now a professor researching molecular biology of long-QT syndrome among other things. He also is a member of the QTsyndrome.ch board of advisors. So this afternoon, we updated the website's genetics section.There also was a funny coincidence. A man came to drink coffee and

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-22268860080047002862006-11-14T16:51:00.000+01:002006-11-24T09:23:41.026+01:00

Next Monday, I finally get to see my dear friend Hugues this year. He is a professor working for the University of Lausanne and one of the few scientists in Switzerland researching long-QT syndrome among other things.Hugues contacted me back in 2001 and helped me to develop the QTsyndrome.ch website. For instance, he edited the list with drugs that prolong the QT-interval found on the Swiss

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0tag:blogger.com,1999:blog-20010662.post-56746444774664097972006-11-10T22:06:00.000+01:002006-11-10T22:34:18.503+01:00

Webrings were cool in the late 1990's. You assembled a few websites declaring a specific topic and linked them by a navigation bar that allowed you to surf back and forth within the ring.I started the first long-QT syndrome webring in 1999 and even had a few member sites (I think, there were 12). But then, webrings got uncool and one after another of my member sites removed the nevigation bar.I

Jon N. Mettler-Bennetthttp://www.blogger.com/profile/15462761312411208914noreply@blogger.com0