Zapper Newsletter: August, 2005

August 5, 2005

Zap•Update

August 5th 2005

LATEST HEADLINES

~ Updated: August 5, 2005 ~

EXCLUSIVE:

Complete Guidant ICD Recall Coverage

ICD Defects Trigger

New Cost/Benefit Debate...

New Discovery of Near Fatal ICD

Incident before Two Deaths...

More Calls for Better

Reporting by ICD Makers,

As Senator Gets Involved...

Guidant Relaunches

Contak Renewal 3 ICD...

Improved 3D Arrythmia Mapping

Uses Stereotaxis' Technology...

Former College Baskeball Player

Dies During ICD Surgery...

Arrhythmia Key Issue at Vioxx Trial...

Guidant Names Chairof

Independent ICD Panel &

Promises More Openess...

Gene Therapy & New Ablation

Offers Help to End Arrythmia...

GO TO Zap • News

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Publisher's

Note from

Jon Duffey

Greetings everyone....

Here's hoping all of you in the northern hemisphere are staying cool... as another trend of record high temperatures sweep across many countries. The heat waves have already claimed scores of lives. Those of us with cardiac problems are especially susceptible to falling victim to extreme weather conditions, including radical barometric pressure changes as well as temperature.

BE COOL

First and foremost: DO NOT GET DEHYRDATED. If working or playing outside you may lose as many as four glasses of water an hour. That can lead to a dangerous electrolyte imbalance… and as I have personally discovered that can lead to a bout of arrhythmia and a wake up call from our implanted EMS crew. In fact, electrolyte imbalances get the blame for half of ALL the zaps I have gotten over the years.

Healthy people should drink two to four glasses of water every hour spent in hot weather. But ALL people with any kind of heart condition should discuss this with their doctor as many of us should NOT take in excess liquids!

Other considerations: Avoid sunburn with long sleeved, light colored, loose fitting clothes. Wear wide brimmed hats to protect your face and neck. Don't forget sunglasses with substantial UV protection… and use a sunscreen with a high SPF number. Most tanning lotions do NOT offer enough protection. And as I learned last weekend, if doing yard work wearing sandals - make sure your feet and toes are protected too! Don't forget to take lots of breaks and be sure to pace your activities. Listen to your body! Get inside an air conditioned room at the first hint of overheating - such as change in breathing or vision, dizzy, nauseous, or confused.

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CHILLING SCD PATIENTS

Speaking of body temperature, my friends at Ivanhoe Broadcast News are reporting a fascinating story this week. Seattle EMT's are using cold saline injections that may help improve the survival rate of cardiac arrest patients before they ever reach the hospital. CLICK HERE to read how mild hypothermia works to save us.

ICE Also on the cool theme, have you seen reports (or our BBS thread) about the ICE code? The idea by a British paramedic spread world wide after the London bombings.. a way to tell emergency crews who to contact or what to do "In Case of Emergency" using simple - standardized - entries in our cell phone directory.

CLICK HERE for a good story on how to make the system work for you.

In addition to providing quick access to my wife's office phone, mine also has links to my cardiologists, and a note: "See meds.doc file on key chain memory stick." So even if unconscious when I arrive at the ER, they can get my entire medical record by plugging the memory stick into a computer USB port.

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The Guidant ICD Defects

Now for the issue that's still raising lots of tempers. There have been lots of developments in that story in the past month… most able to be reduced to a series of bullet points. If you see something below of interest to you, get details from the special Guidant ICD Zap•News Page.

The FDA gave Guidant approval to relaunch repaired Contak Renewal 3 device…

Another Guidant "fix" put ICD recipients at greater risk… Iowa Senator Grassley demands access to FDA records on Guidant…

The original recall was expanded to include 11 models and given highest (Class1) priority by FDA…

Defective Guidant pacemaker added to list of recalls…

Guidant appoints head of "independent" advisory panel…

Interview with Guidant CRM Chief, Dr. Fred McCoy: Not disclosing defects justified...

Still unresolved: How explanation costs will be covered…

Defective ICD incidents spark new debates on the costs and benefitis...

Prestigious medical journal criticizes the ICD Maker…

That last item appeared in the New England Journal of Medicine. The insightful article does an excellent job of chronicling the events surrounding the defect discovery and the withholding of information about the problems - culminating in death. It shows in great detail why Guidant chose to keep the dangers a secret - even after the issues of ethics and morality were raised. Since few Zap•Life readers have a ($199/year) subscription to that publication, our new sponsor at Seeger Weiss LLP is making it available to us online. I urge you to access their site via THIS LINK, and download the article on a pdf file. If you are prone to anger, you may want to take a chill pill before reading it.

Attorney Chaffin, a partner at Seeger Weiss, tells me several ZapLife.org readers have contacted him with questions - especially those upset that Guidant is not willing to cover all costs related to the explantation of potentially defective devices. If you have a legal question, CLICK HERE to email him.

warns people facing replacement surgery: Demand the surgical team return your old ICD to you! Many readers report Guidant technicians are snapping these up as soon as they are removed - and refuse to give them back to the people who bought and paid for these devices. Don't let this happen! It could be critical evidence later, if you choose to pursue legal action. The suggestion: Give written instructions to your doctor, surgeon, and others - making it clear it is your property and you do NOT want the ICD maker laying claim to the unit. We hope to make a sample letter available online in the next week.

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Treatment News Briefs

Several research achievements made news during the past month, offering new solutions for people dealing with potentially fatal arrhythmias: New meds, better ablation options, improved 3D diagnostic mapping, and the most promising work - involving gene therapy and stem cell research. Check out the Zap•News Page for details.

A huge hurdle was cleared in the past week when Senator Bill Frist (R-TX) changed his position and now supports spending more government money on stem cell research. Sadly, President Bush reacted by promising to continue restricting the life promising research. If this issue matters to you (and it should since it could mean the difference between life and death) use the links below to contact your Senators and member of Congress and let them know your position on this important issue.

www.senate.gov

www.house.gov

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Improvements To ZapLife.org

We have started making major improvements to ZapLife.org, including the relaunch of our Zapper Gallery program, revamping the Zap•Links, and refining the Zap•Groups section. And, we will again try to organize a FREE 24/7 support service.

The Gallery will feature pictures and stories from our readers… to add human faces and their stories which relate to all of us. If you have a picture and bio to share with other Zap•Folks, email us a picture (JPG file attachment preferred) and a paragraph bio about what you want other Zap•Folks to know about you.

USE THIS LINK

Do you know of another web site that might help our readers? We invite you to send us a Zap•Link suggestion. In your email, include the site name, URL (address,) and a one or two sentence description of its mission statement or what it has to offer.

USE THIS LINK

Do you take part in a local support group? If so, help us promote their services! In your email, tell us the name of the group, its meeting frequency - such as monthly or quarterly, the day and time of the next meeting, and the name/phone/email of a contact person. Feel free to mention anything special your group does or offers.

USE THIS LINK

Finally, when few people registered for the Zapper•BBS and/or updated their profiles, I abandoned the planned 24/7 support project. That brought a flood of emails from five (5!) continents urging me to reconsider. OK. I will give it another try. If you would like to be a resource for other Zap•Folks needing to chat (via internet messaging) on a moments notice - or might want to make use of such a service yourself, access the Zapper•BBS and click REGISTER (upper right side of page) if you have not done so before. Click PROFILE if you have registered.

You do NOT have be a user of all four of the internet messaging options (ICQ, AOL/AIM, MSN, ) but one would be nice. In your location block, ENTER THE INTITIALS OF YOUR COUNTRY FIRST, such as US or UK or AUS! This is critical when sorting to find people near you… or in an area where you may want to travel and locate medical services in advance of your visit. Follow that with the state, province, or district such as FL or RM. End with the name of your city, village, or general area such as Gold Coast, Birmingham , Canterbury , or Tampa Bay.

In the occupation block, put the name of your ICD maker and a model number, followed by your job or employment status if you want. Put what ever you want in the interest block. In the signature block, add as much of your medical history as you feel comfortable sharing. In my case, I mention when I got my first implant, that I am on my 3rd device.. my zap record, meds and birthday.

Let's make this project work. OK? I'm counting on you to make this a viable effort.

There is one other addition coming to our family of online services. One of our Zapper•BBS Moms has indicated an interest in starting a site to serve young ICD recipients. We have offered her server space and bandwidth to turn her idea into a reality. With more and more teens and younger kids getting implants, I think this can be a real service that will help many. Cyndie (Mom of 2 Heart Kids) is leading that project. Stay tuned as that becomes a reality.

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Avoiding a Zap from Nature

We started with weather… and we will end with it too. With high temperatures, our atmosphere becomes unstable a lot easier, and that leads to thunder storms. Thunder is the result of lightning - something we see a lot here in Florida, THE lightning capital of the country. Week before last, five people were hit with one mighty bolt that slammed into the water along Clearwater Beach. All will survive, but one fellow was in critical condition for several days. Witnesses say he was hit in the head, and lifted five feet out of the water by the bolt of static electricity! Yesterday, a Florida firefighter got zapped in Polk County while using his computer - inside his home!

Episodes like that renew a question that I have often pondered: What happens to people with an ICD when they get struck by lightening? I used to joke when friends advised taking cover when we hear lightning: "I don’t need to worry, I have a built in E-M-S crew!"

Well in the recent spate of storms when much of the U.S. got a fair share of lightning, someone with an ICD WAS hit by lightning! It happened to Dave from Maine. His mother, Adele (poetess38) is a frequent Zap•List poster who broke the news a couple weeks ago. "Yes," the lightning did disrupt his normal heart beat, and "Yes" his defibrillator responded - with 10 doses of therapy. Dave survived with a short stay in the hospital. We hope to have his story next month!

Until then, keep you and your loved ones safe from bolts of blue and the heat!

Make it a great month and stay well…

Jon Duffey

Publisher

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