Guest guest Posted October 21, 2007 Report Share Posted October 21, 2007 I know many of you are really upset about another potential problem with our life protecting implanted hardware. I hope you feel comfortable bringing ALL your fears and anxieties to this forum and the ZapLife.org BBS forum. With so many in this family, it's hard to have a "new" problem that has not been dealt with by at least a few others before. Because of legal problems, we can not hand out medical information... but we can sure share our insight about ways to cope with the various challenges.On the current issue, I would personally advise you to avoid worry. Worry is a bad enemy to our bodies - 2nd only to our cardiac problemsIt solves and accomplishes nothingIt only gets in the way of clear thinking and, It may cloak a solution, while wasting time and energy needed for productive actionSo... bring those worries here... get them out of your system... and leave them here, so you do not have to carry them.I thought providing a platform for someone from Medtronic to answer your questions would help... so I placed a couple calls and was blown away when the company made their Medical Director available. Not a technician or P-R person... but Medtronic's top physician! I think this shows how much the company wants to keep your trust, and how much clout you have as a member of the ZapFolk family! I know some thought he was not being completely upfront, but as an old TV news boy usually adept at knowing when getting a line of company fluff... I think he was being as honest and upfront as possible.... sticking around to answer each and every question sent his way, missing a few perhaps when more than one was on the table at the same time. Yes, I do not think got the answers he wanted... but I think his wife's situation is very unique and the Dr. was not prepared to deal with those issues as it seems different (although likely related to some kind of device or operational flaw) than that of the current Fidelis situation. I hope and get their situation resolved quickly... I will make some calls Monday to see if I can get some answers.While I do not have one of the affected units, this is what I got from the Thursday session: The problem is serious... but one not likely to threaten lives like the Guidant 2005 issue. (Has it really been than long?) Anyone with one of the suspect leads can have their ICD reprogrammed to make use of a work-around so the problem will NOT affect their monitoring and/or therapy if needed. Few should need an immediate replacement with this process available. For the few needing a completely new lead, removal of the defective unit is not usually required as there is usually room to add a new lead with the "capping" of the old one. There are lots of ZapFolks walking around today with two or three old leads still in there. Just so you know... from what I have read, while the ICD can usually last from 4 to 8 years... most leads function OK at least ten years and normally to 12 years. In 13 years I have had 4-devices... but only one lead, so I expect to join the new lead club in the next few years. I am not thrilled with the thought, but I am not letting it cause me fear or worry. You shouldn't either. I refer to my comments above how that serves us only as a negative impact. If you still have questions... I would suggest you first try to get an answer from your EP. Second, try the Medtronic phone service at 1 (800) 551-5544... and while the wait there continues to be long, you can EMail them with this link .... And if you are still not satisfied... post your issue here, and if no one offers you satisfaction, I will contact Dr. Steinhaus on your behalf.The most important thing I can offer is the hope you can relax... don't let this consume you with worry. You're not alone. If it were a life threatening crisis... I would not try to convince you otherwise. We all have to deal with plenty of those, and I do not think this is one that deserves such a high level of urgency. Is it a serious situation? Yes. Does it merit worry? Never.I trust this calms some of your frayed nerves. Even though I have not been feeling very chipper myself lately, I will try to help those who need it... and hope the ZapChat achieved some peace of mind.Stay well...ZapDuff Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2007 Report Share Posted October 21, 2007 Thanks Duff -- I hope you are feeling like your ole' self very soon! Keep on keepin on! ~guin ZapLife.org/ Missions Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2007 Report Share Posted October 21, 2007 Hi Jon - Thanks for this post -- well said. For any Canadians on the list, here's the Medtronic Canada contact information: Medtronic of Canada Ltd. 1-800-268-5346 They're in Mississauga (just outside Toronto), and I think have " normal " business hours (8.30am to 5pm?). If you call and you get somebody's voice mail, just press '0' (zero) and ask to speak with somebody else. They've been good about providing information, but I rarely get somebody in person at the first extension they try. Hope that helps. Be good to yourself and stay well. - Roxe Ottawa, Ontario > > I know many of you are really upset about another potential problem with > our life protecting implanted hardware. I hope you feel comfortable > bringing ALL your fears and anxieties to this forum and the ZapLife.org > BBS <http://zaplife.org/phpBB2/index.php> forum. With so many in this > family, it's hard to have a " new " problem that has not been dealt with > by at least a few others before. Because of legal problems, we can not > hand out medical information... but we can sure share our insight about > ways to cope with the various challenges. > > On the current issue, I would personally advise you to avoid worry. > > 1. Worry is a bad enemy to our bodies - 2nd only to our cardiac > problems > 2. It solves and accomplishes nothing > 3. It only gets in the way of clear thinking and, > > 4. It may cloak a solution, while wasting time and energy needed for > productive action > So... bring those worries here... get them out of your system... and > leave them here, so you do not have to carry them. > > I thought providing a platform for someone from Medtronic to answer your > questions would help... so I placed a couple calls and was blown away > when the company made their Medical Director available. Not a > technician or P-R person... but Medtronic's top physician! I think this > shows how much the company wants to keep your trust, and how much clout > you have as a member of the ZapFolk family! [] > > I know some thought he was not being completely upfront, but as an old > TV news boy usually adept at knowing when getting a line of company > fluff... I think he was being as honest and upfront as possible.... > sticking around to answer each and every question sent his way, missing > a few perhaps when more than one was on the table at the same time. > Yes, I do not think got the answers he wanted... but I think his > wife's situation is very unique and the Dr. was not prepared to deal > with those issues as it seems different (although likely related to some > kind of device or operational flaw) than that of the current Fidelis > situation. I hope and get their situation resolved > quickly... I will make some calls Monday to see if I can get some > answers. > > While I do not have one of the affected units, this is what I got from > the Thursday session: The problem is serious... but one not likely to > threaten lives like the Guidant 2005 issue. (Has it really been than > long?) Anyone with one of the suspect leads can have their ICD > reprogrammed to make use of a work-around so the problem will NOT affect > their monitoring and/or therapy if needed. Few should need an immediate > replacement with this process available. > > For the few needing a completely new lead, removal of the defective unit > is not usually required as there is usually room to add a new lead with > the " capping " of the old one. There are lots of ZapFolks walking around > today with two or three old leads still in there. Just so you know... > from what I have read, while the ICD can usually last from 4 to 8 > years... most leads function OK at least ten years and normally to 12 > years. In 13 years I have had 4-devices... but only one lead, so I > expect to join the new lead club in the next few years. I am not > thrilled with the thought, but I am not letting it cause me fear or > worry. You shouldn't either. I refer to my comments above how that > serves us only as a negative impact. > > If you still have questions... I would suggest you first try to get an > answer from your EP. Second, try the Medtronic phone service at > 1 (800) 551-5544... and while the wait there continues to be long, you > can EMail them with this link > <http://www.medtronic.com/corporate/contact.jsp> .... And if you are > still not satisfied... post your issue here, and if no one offers you > satisfaction, I will contact Dr. Steinhaus on your behalf. > > The most important thing I can offer is the hope you can relax... don't > let this consume you with worry. You're not alone. If it were a life > threatening crisis... I would not try to convince you otherwise. We all > have to deal with plenty of those, and I do not think this is one that > deserves such a high level of urgency. Is it a serious situation? Yes. > Does it merit worry? Never. > > I trust this calms some of your frayed nerves. Even though I have not > been feeling very chipper myself lately, I will try to help those who > need it... and hope the ZapChat achieved some peace of mind. > > Stay well... > ZapDuff > Quote Link to comment Share on other sites More sharing options...
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