Device brand: be a part of the decision.

Your doctor may have told you that you need an implantable cardioverter defibrillator (ICD). The decision whether or not to get the ICD should not be taken lightly. Once it’s been implanted, the device and leads will be there for the rest of your life, so having an ICD means a lifelong commitment. You should understand all the facts, implications and future consequences of getting the device.

As a patient and patient advocate, I encourage you to do as I did and become an active participant in this important decision. There are several device makers, and the selection of a brand should not be left to the doctor alone.


You must not only consider the overall features of a generator, its longevity, charge times, and ability to reduce unnecessary RV pacing, but you must also take into account a device manufacturer’s ethical standards, its sense of corporate responsibility and the entire brand experience.

Read a related entry on the message board »

The ICD User Group is a non-profit resource for people living with ICDs, candidates for ICD surgery, and their friends and families. As patients ourselves, we encourage other patients to educate themselves, know their choices, and become active participants in their health care.

In reference to: Google Sidewiki entry on Medtronic’s Web site.

WATCH: Living with your ICD -- Speaking Frankly

If you are a manufacturer of ICDs, or a hospital, and you must make a video to educate your patients, use real people.

This Boston Scientific video is an example of how it can be tastefully done. The nurse featured here is actually a real nurse. Most importantly, she doesn’t dumb down the message or speaks in a patronizing tone. She speaks frankly and explains it clearly.

There’s no talk of “magic wands” or “guardian angels on our shoulders”.

Watch and compare it with “Living with your ICD -- The ‘Magic Wand’”

WATCH: Living with your ICD -- The "therapy"

In this third clip of the series “Living with your ICD”, the patient asks the doctor what he should expect to feel in the event of a shock to the heart.

The doctor‘s response is a long spiel on how each “therapy” is different (he never calls it a shock), how it depends on your heart’s behavior and on your personal perception.

“This is a common concern among new ICD patients. The fact is, each therapy is different. Depending on how your own heart is behaving and your personal perception. Remember, this is an intelligent device that your doctor can set to deliver the smallest amount of energy you need to regain control of your normal heart rhythm.”

Compare the above with a description from a patient who has actually been shocked. His own words.

“If the devil had a mechanical bull which shot electrical bolts out of its devil bull horns, and this bull ran full tilt down a steep hill and gored you in the chest, then you’d know how this $#!T felt!!! I’m sorry that some of you can identify with this.”

(Read the full post here.)

It would be much nicer to hear them acknowledge that no one can really tell you how it feels to be shocked in the heart unless they actually have an ICD that’s gone off!

Watch this overoptimistic, candy-coated, patronizing answer below.

WATCH: Living with your ICD -- The "Space Program"

More from Dr. “Patronizing” in this manufacturer’s video of a mock support group for implantable defibrillator (ICD) patients.

In this clip, the doctor explains what happens during a follow up visit to interrogate the device.

He explains:

“Now, borrowing technology from the space program, called bidirectional telemetry, device settings can even be adjusted by the programmer.”

Whoa! slow down... doc! We're having a hard time following!

Watch.

WATCH: Living with your ICD -- The "Magic Wand"

I recently attended a local ICD support group meeting in which a device manufacturer was invited to participate. They opened their talk with a 30-minute video of a mock support group in which ICD patients were played by a host of actors so bad that even this gig seemed beyond their acting abilities.

According to its description, the video was “taped in the friendly setting of an ICD support group” and included “easy-to-understand answers.”

Gee, I am so glad they dumbed it down for us patients.

In this 20 sec clip, a “patient” raises his hand and asks the doctor “what happens during these follow up sessions?" The patient is referring to the follow-up visits when the device gets interrogated.

The doctor then explains it in the most condescending tone possible:

“Well, we use a sort of ‘magic’ wand that we hold over the ICD implant spot. This… ‘wand’ is about the size and shape of a normal remote control device…”

Thank God for magic! Watch.

A four-wheeled defibrillator.

I flipped the page and the ad immediately caught my eye. The headline read "A four-wheeled defibrillator."

The rest of the copy said:

Pump a little adrenaline into your life with the Impreza WRX. 265-horsepower provides the thrust. Symmetrical All-Wheel drive provides the grip. Combined, they deliver a 0 to 60 time of just 4.7 seconds, and a shock to your heart every time you hit the accelerator.

I even like the car, but I can guarantee you that I don't want what the ad promises.

(Seen on DETAILS magazine, November 2009)

October 2009 Bay Area Events.

Saturday, 10/10: ICD User Group’s Monthly Meeting

It’s sudden cardiac arrest awareness month and we’re meeting again this Saturday, October 10, from 2:00 to 4:00 PM in Sunol. We’ll gather for some light food and a nice chat at our usual place, Bosco’s Bones & Brew. Bosco’s is located at 11922 Main Street, Sunol.

Friday, 10/16: Stanford ICD Patient Day

The Stanford Arrhythmia Service will be hosting an ICD Patient Day on October 16, 2009 at the Palo Alto Westin Sheraton, from 8:00 AM to 2:00 PM. The program will cover a variety of topics, including the future of ICDs and options for patients with frequent arrhythmias. Samuel sears, PhD, an international authority on helping patients cope with the fear of ICD shocks, will be the key note speaker. You must call (650) 723-7111 for more information or to confirm your attendance. Download the invite here.

Saturday, 10/17: Charged Hearts 19th Annual Meeting

Kaiser’s annual ICD patients meeting will happen on October 17, 2009 at the Napa Valley Marriott Hotel, from 8:00 AM to 2:30 PM. Participants will have a chance to explore the psychological implications of living with an ICD, including issues of anxiety and depression. Dr. Sears will also speak at this event. You must RSVP by calling (707) 651-5544 no later than Monday, 10/12. Please leave your name, phone number, number of people in your party, and your lunch preference: grilled salmon, or braised beef short ribs.

Saturday, 10/24: ICD Patient Education and Support Group

Kaiser San Jose’s quarterly support group and informational session will be held on October 24, 2009, at Kaiser Permanente, 276 International Circle (Family Health Center, 3rd floor, Rooms A, B and C), from 10:00 AM to 2:30 PM. Dr. Nicole Varnell, PharmD, will speak about common medications and a technical specialist from St. Jude Medical will cover the basics of ICDs. You must RSVP no later than Monday, 10/20, to Thuy-Hong Vo, RN, (408) 972-7431.