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#1 of 7 Old 07-20-2007, 08:44 AM - Thead Starter
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My old cardiologist called me in the office yesterday afternoon, and asked me to be part of a research study that one of his colleagues is doing on people (specifically athletes) with congenital heart defects/issues like me and who have (A)ICD's (implanted defibrillators) and continue to exercise, etc.

He thought of me right away and gave me a call. Although he is no longer my cardiologist, (I see another one who specializes more in the condition that I have), him and I have always had a special relationship, since I was so young, 34, when I found out about my condition. I had been a very active person, and was devastated to learn about this, and what I had to give up as result. In the days of doctor's spending very little time with their patients, he gave me his time, made himself available to me whenever I needed him, and most importantly, gave me a shoulder to cry on.

Although I don't really consider myself an athlete any longer, the fact that I still get in the saddle and pedal 4-5 time a week, I guess qualifies me as someone who exercises.

This is the same doctor who when I asked him two months after I was diagnosed with a serious heart condition if I could exercise again, told me that he wish a lot more of his patients would ask if they could exercise instead of being told to exercise. Also a month before that conversation he told me that the marathon I ran a little over a year before diagnosis, could have killed me (I had no symptoms at the time)

I always think its neat to participate in studies like these, as it has a potential to be very beneficial to other patients who may in the same situation that I am.
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#2 of 7 Old 07-20-2007, 09:02 AM
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That sounds like a really interesting study! I hope you enjoy the process.

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#3 of 7 Old 07-20-2007, 12:09 PM
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awesome! what does the research study entail?

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#4 of 7 Old 07-20-2007, 04:02 PM
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That sounds great cappy! Hope they get some helpful information from it!

Sounds like he was a great dr and very helpful to you when you needed it.
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#5 of 7 Old 07-21-2007, 08:36 AM - Thead Starter
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I spoke to the nurse yesterday afternoon, and this is a study being done by Yale University, to follow folks who have ICD and continue to participate in sports at a competitive level. Although, I no longer consider myself in that category, I convinced the nurse otherwise, (I dazzled her with numbers from my cycling spreadsheet log wink.gif )

Basically the study will be done by phone, and they will get all my medical records...which by now are the size of metropolitan phone book, and the quarterly defibrillator reports from my cardiologist's office.

I think the Yale group is more interested in those in the study group that have actually inversions (shocks) and at what time.

I remember after one interrogation...which is when they download info from the device, every three months, it was noted that I was in ventricular tachycardia, for 19 seconds. When the nurse asked me about it, I was able to tell her that I was out riding my bike, and actually knew based on the time, approximately where exactly I was on the course (again the numbers geek in me). I was 11 seconds away from getting shocked that particular time. I had no symptoms at the time, so that would have quite a surprise to me if it in fact did happen.

The nurse was very impressed with my level of activity and how disciplined I am about trying to maintain an exercise program under the current circumstances that I am under, and also how even though I am exercising I do so within the limitations set by the doctors.

Should be interesting to see how this goes

I have only had one shock in the four years I have had the device, and a few arrhythmia's that were recorded as well. What is interesting about the devices is that when you have events, (shocks, arrhythmia's, etc) it records the actual time and date of the event so you can pinpoint the wherefores and whys of what caused said event
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#6 of 7 Old 07-21-2007, 08:46 AM
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that is so interesting about the device. My patient who is in his laste 30's (i think) and has one has not been shocked. He has had it for quite some time too. that is pretty nutty. do you do your updates via the phone like the pacemakers?

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#7 of 7 Old 07-21-2007, 10:12 AM - Thead Starter
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I have to go to the office to get my device checked. I go over every three months. The basically put this thing that looks like a big magnifying glass over the device...which is just under my left collarbone, and it downloads all the information from the past three months.

My device is also a pacemaker as well, and paces me about 98% of the time, because I am so loaded up with different cardiac med's it keep my BP/HR very low. It used to be set to pace at 40 put they moved it up to 60.

I also have one of Guidant models that they had problems with a few years back, and I had to go in for a software change, which was done via interrogation device.

I am due to get a new device in about a year.
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