Guest guest Posted December 12, 2005 Report Share Posted December 12, 2005 Thanks - my clinical coordinator is going to talk to the director of the study to see if there is a way I can bypass the " three strikes your out " rule of afib after 90 days of medication... my history obviously shows that medication is not 100% effective for me, and since I'm so symptomatic, and unable to function well in afib, I usually go to the ER for a zap (which is not without it's own risks), the coordinator is going to talk to the director about whether its fair to make a patient go through all that when there is so much historic data. My coordinator actually told me a story about a guy who signed up for the study, got the medical management card and within the three months had gone from persistent afib to PERMANENT afib, and was dropped from the study because he no longer qualified!!! What a true bummer that must have been for him! Going through the ropes and then not be able to qualify... I understand the need to do the study correctly to get accurate and valid information, but it seems a little phoney not to be able to use any past data, and to have the initial three months when things don't count. If I had 12 episodes in the first three months and then none after, I wouldn't qualify for the procedure. And the darned study is to insure the safety and efficacy OF the tool they are making.... geeze.. you'd think they'd want otherwise healthy people to want to undergo the procedure with it. Ah well.. what will be will be, and I'm sure it will all work out. Stef Stef Moskowitz wrote: Hi, Stef. I think Sandy's probably right, but you could try talking to people who've been turned down for procedures and see if somebody found a way to change their minds. Re: a bummer Stef, hope you don't stay bummed too long ... maybe there's a reason it turned out this way for you ... take a step back and trust the Universe on this one. Good luck. Sandy Quarter Acre Orchids wrote: > I am so bummed right now... I just received a call from JH and they > opened my envelope and of course I got medical management, instead of > the CryoCorp ablation option... I am so bummed. > > They are going to send me my event recorder, though, since I > sometimes think I'm getting little runs of afib, and if I am, then I > will stay the course for three months and then hopefully be able to > record three events and go over to the ablation side. This is > apparently all FDA regulations and has nothing to do with the company > itself, or the study. > > fooey on this.... > > Stef > Web Page - http://www.afibsupport.com List owner: AFIBsupport-owner For help on how to use the group, including how to drive it via email, send a blank email to AFIBsupport-help Nothing in this message should be considered as medical advice, or should be acted upon without consultation with one's physician. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2005 Report Share Posted December 12, 2005 So much red tape! At least you've got your coordinator on your side. And, a darned good attitude! Re: a bummer Stef, hope you don't stay bummed too long ... maybe there's a reason it turned out this way for you ... take a step back and trust the Universe on this one. Good luck. Sandy Quarter Acre Orchids wrote: > I am so bummed right now... I just received a call from JH and they > opened my envelope and of course I got medical management, instead of > the CryoCorp ablation option... I am so bummed. > > They are going to send me my event recorder, though, since I > sometimes think I'm getting little runs of afib, and if I am, then I > will stay the course for three months and then hopefully be able to > record three events and go over to the ablation side. This is > apparently all FDA regulations and has nothing to do with the company > itself, or the study. > > fooey on this.... > > Stef > Web Page - http://www.afibsupport.com List owner: AFIBsupport-owner For help on how to use the group, including how to drive it via email, send a blank email to AFIBsupport-help Nothing in this message should be considered as medical advice, or should be acted upon without consultation with one's physician. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2005 Report Share Posted December 13, 2005 actually, alcohol won't do it for me, but yesterday, after eating a few too many Hersheys " Treasures " my heart was definitely doing some strange things, so " chocolate... here we come! " ... I actually teased the clinical coordinator and told her I was going to go to my mom's a few times after my 90 days and put the recorder on her... mom's in permanent afib! Not really... but it was a thought! Stef john wrote: Stef, when you get hooked up to the recorder and if it's your desire that it shows an afib event, all kidding aside, why don't you drink some alcohol beverages or a few cups of cappuccino. I know it'd do for me. P > > I am so bummed right now... I just received a call from JH and they opened my envelope and of course I got medical management, instead of the CryoCorp ablation option... I am so bummed. > > They are going to send me my event recorder, though, since I sometimes think I'm getting little runs of afib, and if I am, then I will stay the course for three months and then hopefully be able to record three events and go over to the ablation side. This is apparently all FDA regulations and has nothing to do with the company itself, or the study. > > fooey on this.... > > Stef > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2005 Report Share Posted December 13, 2005 actually, alcohol won't do it for me, but yesterday, after eating a few too many Hersheys " Treasures " my heart was definitely doing some strange things, so " chocolate... here we come! " ... I actually teased the clinical coordinator and told her I was going to go to my mom's a few times after my 90 days and put the recorder on her... mom's in permanent afib! Not really... but it was a thought! Stef john wrote: Stef, when you get hooked up to the recorder and if it's your desire that it shows an afib event, all kidding aside, why don't you drink some alcohol beverages or a few cups of cappuccino. I know it'd do for me. P > > I am so bummed right now... I just received a call from JH and they opened my envelope and of course I got medical management, instead of the CryoCorp ablation option... I am so bummed. > > They are going to send me my event recorder, though, since I sometimes think I'm getting little runs of afib, and if I am, then I will stay the course for three months and then hopefully be able to record three events and go over to the ablation side. This is apparently all FDA regulations and has nothing to do with the company itself, or the study. > > fooey on this.... > > Stef > > > > > > > Quote Link to comment Share on other sites More sharing options...
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