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[AICD's]
Author: Mark (---.proxy.aol.com)
Date: 01-07-03 14:41
I have a friend who just recieved an ICD. She went to NIH where she and her family has went for most of their lives. I just started to get involved with her condition when i saw an article about the dual chamber pacemakers. She recieved hers back in September and has been hospitalized and nearly died, she has felt worse after the ICD was installed. Her Doctor. Dr. Lameh Fananapazir, requested her to get the pacemaker. I was wondering if anyone knows much about this Dr. and if a pacemaker should have been the answer. She would have times where she would go into A-fib, I dont know how severe that is but she was doing a lot better before the pacemaker and now they want her to be on the list for a heart transplant. I just cant see how this could go from one extreme to the other so quickly and only after the pacemarker, thanks for any help....Mark
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[Re: AICD's]
Author: Reenie (---.snbrca.adelphia.net)
Date: 01-07-03 14:56
Mark,
I'm sorry to tell you that the president of the HCMA has had a very bad experience with the NIH. Maybe you should call her to request where your friend could find a specialist. The # is 973-983-7429. Please give her a call.
Reenie
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[Re: AICD's]
Author: Sarah B--Board Moderator (---.client.attbi.com)
Date: 01-07-03 15:14
Dear Mark,
I'm very sorry your friend ended up at the NIH with that doctor. He has been cited for not following proper human research informed consent protocols. His research with pacemakers has been largely discredited.
Please have your friend call Lisa and she can direct you to doctors in Boston, NY, and Cleveland (or MN if she can travel that far) who can help.
I wish her all the best,
Sarah
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[Re: AICD's]
Author: Linda, Bd of Directors (---.wmnsmd.adelphia.net)
Date: 01-07-03 15:49
Mark, I'm glad you're friend is not going thru this alone. Please help and encourage her to get another opinion from an HCM speciality center ASAP. She may need some reprograming of the pacemaker or a whole new treatment plan, but needs a good evaluation soon. As Sarah said, call the HCMA office (Lisa) for info on centers with extensive experience. Linda
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[Re: AICD's]
Author: Lisa Salberg (---.dyn.optonline.net)
Date: 01-07-03 16:03
Mark,
Your friend sounds much like my sisters case. I can not say strongly enough how important a 2nd opinion is with an HCM specialist. I would be happy to give you some names and numbers.
Please call the office - I will be around on Wends AM - but I have been sick and have no voice so it will have to be a short call and do not mind me whispering.
973-983-7429
Lisa Salberg
Author: Mark (---.proxy.aol.com)
Date: 01-07-03 14:41
I have a friend who just recieved an ICD. She went to NIH where she and her family has went for most of their lives. I just started to get involved with her condition when i saw an article about the dual chamber pacemakers. She recieved hers back in September and has been hospitalized and nearly died, she has felt worse after the ICD was installed. Her Doctor. Dr. Lameh Fananapazir, requested her to get the pacemaker. I was wondering if anyone knows much about this Dr. and if a pacemaker should have been the answer. She would have times where she would go into A-fib, I dont know how severe that is but she was doing a lot better before the pacemaker and now they want her to be on the list for a heart transplant. I just cant see how this could go from one extreme to the other so quickly and only after the pacemarker, thanks for any help....Mark
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: AICD's]
Author: Reenie (---.snbrca.adelphia.net)
Date: 01-07-03 14:56
Mark,
I'm sorry to tell you that the president of the HCMA has had a very bad experience with the NIH. Maybe you should call her to request where your friend could find a specialist. The # is 973-983-7429. Please give her a call.
Reenie
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: AICD's]
Author: Sarah B--Board Moderator (---.client.attbi.com)
Date: 01-07-03 15:14
Dear Mark,
I'm very sorry your friend ended up at the NIH with that doctor. He has been cited for not following proper human research informed consent protocols. His research with pacemakers has been largely discredited.
Please have your friend call Lisa and she can direct you to doctors in Boston, NY, and Cleveland (or MN if she can travel that far) who can help.
I wish her all the best,
Sarah
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: AICD's]
Author: Linda, Bd of Directors (---.wmnsmd.adelphia.net)
Date: 01-07-03 15:49
Mark, I'm glad you're friend is not going thru this alone. Please help and encourage her to get another opinion from an HCM speciality center ASAP. She may need some reprograming of the pacemaker or a whole new treatment plan, but needs a good evaluation soon. As Sarah said, call the HCMA office (Lisa) for info on centers with extensive experience. Linda
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: AICD's]
Author: Lisa Salberg (---.dyn.optonline.net)
Date: 01-07-03 16:03
Mark,
Your friend sounds much like my sisters case. I can not say strongly enough how important a 2nd opinion is with an HCM specialist. I would be happy to give you some names and numbers.
Please call the office - I will be around on Wends AM - but I have been sick and have no voice so it will have to be a short call and do not mind me whispering.
973-983-7429
Lisa Salberg