WATCH: ICD saves life of Belgium soccer player.

I don’t know how much explaining is necessary here. This amazing video says it all.

In the clip, Anthony Van Loo, a 20-year old Belgium soccer player collapses during a match and is resuscitated by his Implantable Cardioverter Defibrillator (ICD). The device delivers a shock to restore his heart rhythm.




Most of the press has been reporting the incident as a heart attack. This is not accurate. Instead, Van Loo must have suffered what is called an “arrhythmia”. Arrhythmias are disturbances in the normal heart rate and electrical rhythm, and are usually life-threatening. Two of the most dangerous types of arrhythmia are called Ventricular Tachycardia (VT) and Ventricular Fibrillation (VF). Such abnormally fast heart rhythms prevent the heart from pumping blood to the brain, resulting in loss of consciousness. If left untreated, these dangerous rhythms will deteriorate into a cardiac arrest. Read about the difference between cardiac arrest and heart attack.

According to this Time story (Saving Athletes from Cardiac Arrest, by Carolyn Sayre), “Sudden Cardiac Arrest [...] affects more than 400,000 people in the U.S. and is the leading cause of death in competitive athletes.”

Van Loo is known to suffer from an unspecified heart condition that makes him susceptible to life-threatening arrhythmias. He’s been allowed to return to playing soccer after the implantation of an ICD.

I'm sure glad I have an ICD. Truly amazing stuff!

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MP3 player headphones can cause potentially dangerous interactions with pacemakers and ICDs.

This topic has been widely reported in the press since late last year when Dr. William Maisel of Beth Israel Medical Center in Boston revealed the findings of his study. Even CNN covered it.

But I just came across this video and thought it would be good to post it here.

Dr. Maisel and his team of researchers found a detectable interference with the device by the headphones in 14 of the 60 patients studied (23%). They observed that 15 percent of the pacemaker patients and 30 percent of the defibrillator patients had a magnet response.

For pacemakers, this means that the device inappropriately paced the heart without regard to the patient's underlying heart rhythm. For implantable defibrillators, this means that the ICD's antitacnycardia therapy was temporarily suspended due to the presence of the magnet.

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My journey from patient to consumer of health care.

I was only six years old when, on a chilly December morning, I watched my grandmother casually wander into the bathroom for a shower. That was the last time I saw her alive. She was 66.

Almost four decades have passed and the image of my father and step-grandfather violently breaking down the door and carrying out her naked body into the light has remained vivid in my memory. We never knew for sure what took her life.

As a kid, I learned to get used to my heart skipping a beat or speeding up for no apparent reason. I knew that if I would stop just for a moment and wait, the discomfort would go away. Palpitations were quite frequent and I assumed other kids had them too. As an adult, I often thought they were a sign of an unbalanced diet, or the result of too much caffeine and stress.

But then, at 37, I passed out after running up a flight of stairs to catch a commuter train. My heart had gone faster to keep up with my body’s demand for oxygen but had failed to slow down after I stopped running. It just continued to beat faster and faster. I fainted on the platform that day and missed my train.

This is where the scariest chapter of my life begins. After that syncope, and a year of misdiagnoses, I was finally told I suffered from a somewhat common type of genetic heart disease: Hypertrophic Cardiomyopathy.

HCM afflicts 1 in 500 people worldwide, and may cause the heart to develop a deadly arrhythmia, resulting in sudden death. The Hypertrophic Cardiomyopathy Association, HCMA, says on their Web site that nearly 50% of all cases on file are of patients who lived with improper diagnoses for many years.

My first cardiologist suspected mitral valve prolapse (MVP), and my second one never told me I was at risk of sudden death. Per the latter’s advice, I resumed my life as before, unaware of the serious risks. I had to suffer two additional syncopes before I decided that I needed to take matters into my own hands, educate myself about my condition, and seek the care of an HCM specialist. And in my quest, I turned to the Internet for help.

According to iCrossing, a global digital marketing company based in Arizona, 59% of adults use online resources to obtain health information, versus 55% who rely on their doctors. Their study “How America Searches: Health & Wellness” (January 2008) indicates that the Internet has for the first time, ranked ahead of doctors as the number one source of health- and wellness-related information.

But most importantly, the study revealed that social media are increasingly relevant to health and wellness, with 34% of health searchers using Wikipedia, online forums and message boards to delve into health-related topics.

It’s a radical finding: patients aren’t learning from their doctors or even from Web sites as much any more. Patients are learning from each other.

In my experience, as soon as I realized my doctors weren’t giving me the answers I sought, I joined the HCMA online community and got plenty of answers from a network of patients like me. It was the beginning of my transformation from patient to consumer of health care.

After changing doctors and receiving an implanted cardioverter defibrillator (ICD), I joined two other patients and created a local support group. The Bay Area ICD User Group's mission is to educate patients on ICDs and ICD therapy, address concerns and questions, facilitate improved communication with our doctors, and to serve as a network for sharing experiences.

Today, I no longer think of myself as a lonely patient. I have become an empowered medical consumer who finds comfort, validation, and knowledge in the experiences of others like me. I have also learned to embrace my heart disease. It has given me the opportunity to better myself and to meet many wonderful people along the way.

I now realize that my grandmother’s sudden death was likely due to an undiagnosed cardiomyopathy—perhaps HCM. All we knew back then was that Grandma Lourdes had an “unusually large heart.” But as a kid, I always knew that.

Above, from right, grandma Lourdes, me (age 6), mom, and a friend.

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New study on longevity finds that Medtronic ICDs are superior.

From time to time the question of who makes the best ICD comes around (even if I’m the one bringing it up). But since there are few comparative studies among ICDs of different manufacturers, the answer is not an easy one.

Luckily, a study published by Europace late last year (Longevity of implantable cardioverter-defibrillators: implications for clinical practice and health care systems) helps shed some light on the topic of longevity.

A team of doctors in Bologna, Italy, looked into the longevity of Medtronic, Guidant and St. Jude Medical devices implanted from 1/1/2000 to 12/31/2002, a 3 year period.

They found that, under comparable conditions, Medtronic ICDs outlasted Guidant and St. Jude Medical devices, with replacement rates being, respectively, 42%, 95.3%, and 97.2%.

At the end of the follow-up period (12/31/07), 56 of 57 (97.2%) St. Jude Medical, 41 of 43 (95.3%) Guidant, and 10 of 24 (42%) Medtronic devices had been replaced. Among these 124 patients, 17 still had the device in service: 11 single-chamber ICDs (8 MDT, 2 GDT, 1 SJM), 2 dual-chamber ICDs (MDT), and 4 CRT-D (MDT).

At the time the study was done, St. Jude Medical and Guidant used Wilson Greatbatch batteries, while Medtronic devices had their own proprietary batteries.

Device longevity is a big deal to us, patients, since it translates into fewer replacements and a lower risk of complications. Longevity also has a significant impact on the cost per service life of an ICD. In other words, the up-front cost of a device is of limited value when estimating its long-term cost-effectiveness.

From a total of 153 patients:

• 80 received a single chamber ICD (1 lead)
• 59 received a dual-chamber ICD (2 leads)
• 14 received CRT-D devices (3 leads)

The bottom line? Medtronic ICDs last longer.

But I do have to wonder if the newer Boston Scientific devices COGNIS and TELIGEN with proprietary battery technology would have given the Medtronic devices a run for their money.

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Lead Encapsulation

Every day, as I go to work, I walk by trees that have grown into the metal enclosure that was originally put there to protect them. The metal structures were never adjusted or removed. So, the tree trunks and metal have melded. As the trees grow, the metal rods continue to be enveloped by them. The metal can no longer be removed.

The picture is a bit unsettling, but the trees look quite healthy and keep on living seemingly unaware of their predicament.

I want to be like those trees.

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Call with Medtronic

Late last month, Kat and I traveled to New Jersey to attend the annual conference of the Hypertrophic Cardiomyopathy Association. While at the conference, we met a Medtronic PR manager and told her about our local San Francisco Bay Area ICD User group.

In light of our chat, she invited us to participate on a call with other Medtronic employees to tell them about our ICD User Group, what we do, as well as to hear our stories.

This was also a great opportunity to ask them some questions. Here are the answers we got.

Q. Patients believe they have the ability to influence their doctors over what brand/device model they’ll receive. While EPs and sales reps eventually retire, patients do not. A patient's experience with ICD therapy is a life-long journey. Thus, we believe patients must be included in the decision-making process as equal-part stakeholders. How often are patients part of the decision over device manufacturer?

A. Patients have more say now than ever before as to which manufacturer's device is implanted. Some patients are very active in this decision-making process and others are not, either because they did not know they had a choice or prefer to not be in the position to have to decide.

Q. I saw in one of your brochures (series Leadership Defined) that Medtronics ICDs use a proprietary battery charging technology that allows for a charge time of 16 seconds (on the Virtuoso DR and Concerto CRT-D). The brochure also says that Boston Scientific and St. Jude ICDs use conventional Silver Vanadium Oxide (SVO) in their batteries resulting in a charge 10 seconds longer for the Boston Scientific Vitality DR and Contak Renewal ICDs (St. Jude charging times are not available). Another brochure claims that “Medtronic had the greatest percent of ICDs in service after 5 years, and the only manufacturer with devices in service after 8 years.” These sound like significant advantages for patients who have to endure occasional life-saving shocks and periodic device replacements. How come we never hear these points from our doctors?

A. Unfortunately, doctors don’t always have statistics like this readily available to discuss with patients and most patients don’t ask. It is easy to get the information and in the case of charge times, something that we definitely talk about with doctors, but each doctor uses the information differently.

It is becoming easier for patients to access this information and that is a good thing. We are going in the right direction, getting information like this out to patients so they can be more involved in the decisions that are made about their treatment. Medtronic has a great tool in our websites www.medtronic.com and www.hearthelp.com for both current patients and those thinking about device therapy. We also have people available to answer questions on the phone.

Q. Your web site says that "no other company offers as broad a line of ICDs and leads" (I counted 14 different ICD models alone). What's the main difference among the ICD models offered by Medtronic and are these differences significant enough for a patient to care about them?

A. Some differences are due to new technology for treating patients and other differences are related more to the diagnostics of the device as we discussed on the phone. Some differences can be significant to some patients based on their heart condition. An example of this would be “MVP (Managed Ventricular Pacing)”.

Studies have shown the unnecessary pacing in the ventricle can be detrimental to a patient in the long term. MVP allows the devices to cut back significantly on unnecessary ventricular pacing. MVP can not be used in every situation so this feature may or may not benefit an individual patient based on their heart condition

Q. How about the leads? Why so many different models? Should patients demand one model over another? What are the advantages of one lead over the next one?

A. Leads have different designs that work better in certain patients just like therapies in the devices work better for different heart conditions. Leads are actually very intricate medical devices in themselves. Some act strictly to pace and sense what the heart is doing. Some do that and also deliver defibrillation therapies. Some are designed to be placed on the outside of the heart and some on the inside like your leads. Some leads have a silicone outer insulation and some are polyurethane. This makes the lead more or less rigid and also more or less slippery.

Some doctors prefer the feel of one versus another during the implant procedure. Some leads are designed to attach directly to the heart tissue while others simply anchor themselves to the fibers attached to the heart wall. Some leads for the left ventricle essentially just sit in the Coronary Sinus and wedged themselves into place. There are many factors that can be considered with lead selection, just like device selection.

Q. The wireless models for Boston Scientific incorporate encrypted data, but Medtronic’s wireless devices do not and one model (Medtronic Maximo DR) was able to be hacked into during outside testing (download PDF of the study here). While it may be a long shot that anyone would do this, what is being done to address this issue?

A. The data on your Carelink transmissions (if you use a home monitor) is encrypted from the monitor to the network over the phone lines. It is not encrypted from the device to the monitor or from the device to the programmer. Medtronic is aware of the study that was done. This scenario is not likely to occur outside of a laboratory setting.

The person “taking over” the implanted device would have to know a person has a device and have intent to hack in. They would also have to be within a certain distance of the implanted device. Without giving an exact distance, unless a patient is sleeping, they will know the person is there and most certainly wonder what they are doing. With that said, I know this has generated discussions within Medtronic regarding changes to future devices. This is not something we had to think about years ago, but we do need to change as technology changes and patient safety is our number one responsibility and priority.

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