Article about Brugada Syndrome For Nursing Students Works

Leslie Foran Lee and Nancy Felmlee, staff development specialists in clinical education and research at Virtua Health, Mt. Laurel, New Jersey, provide an excellent overview of Brugada Syndrome in this article, published this past spring in Nursing 2010, a peer reviewed journal.

While the article covers the history of Brugada Syndrome and the distinctive features of the disease, it also addresses the practical knowledge that hands-on medical professionals must know.

For example, after a thorough section on the key elements in recognizing Brugada Syndrome, they suggest how to slightly adjust the leads on an ECG reading of a patient with symptoms that may point to Brugada Syndrome, so as "to capture a complete right bundle-branch block or type 1 ECG pattern".

A section entitled, "On The Alert" reminds readers that, now knowing about Brugada Syndrome and its distinctive features, they should be diligent about taking patient histories, probing about symptoms, and helping ensure that Brugada patients get the appropriate care and follow up.

A reassuring read for the Brugada Syndrome patient, or the professional health care provider.

Students Create Informative Presentation on Brugada Syndrome

Check out this video, less than 7 minutes long, in which two high school students, Alburuj Rahman and Yared Selemon, do a nice job describing the basics of Brugada Syndrome. Watch this video - their "Mastery Project for Biomedical Engineering of the Bodies Program about a cardiovascular disease."

I especially appreciated their detailed explanation of the polarization phases of the heart beat, and what happens differently when Brugada Syndrome is involved.

Nice job!

Have you ever watched an ICD at work in a real life situation?

Interesting video on YouTube of a Belgian soccer player, with an ICD, experiencing sudden cardiac death on the field.

This cardiologist blogs about it, and posts a follow up video featuring an interview with the 20-year-old footballer, who is just fine now.

NEW STUDY QUESTIONS ICD IN ASYMPTOMATIC BRUGADA SYNDROME CASES

A report posted on February 3 of this year, involving 1029 Brudaga Syndrome patients followed for nearly three years, suggests that perhaps the 2005 guidelines for treating asymptomatic patients might need to be revised.

While maintaining a tentative tone, the study indicates that only 0.5% of asymptomatic patients (no history of sudden cardiac death episodes or syncope) experienced any cardiac events during a 31 month period. Currently certain conditions such as sudden cardiac death among immediate relatives, or inducibile ventricular tachyarrhythmias during E.P. studies warrant treatment with an implantable defibrillator(ICD).

Future studies are recommended.

DISCOVERED A NEW (TO ME) WEBSITE

Here is a website of interest to Brugada Syndrome patients and, more specifically, their physicians.

"BrugadaDrugs.org has been initiated by the University of Amsterdam Academic Medical Center, department of Cardiology, to aid physicians who treat patients with Brugada Syndrome."

Check it out. It is worth forwarding to your cardiologist.

Boston Scientific has informed doctors of a potential problem with their Cognis or Teligen defibrillators. Some patients (15) have been delivered inappropriate shocks - a very small number of the 8,000 who might be affected.

I read about this in the morning newspaper. Further investigation led me to an AP news release dated March 27.

There is no mention of this release on Boston Scientific's own website. They have a media page of information and news releases. Their press release the previous day, March 26, gave the schedule of major announcements at the March 28-31 58th Annual Scientific Session of the American College of Cardiology, and their press release the following day, March 29, was entitled SYNTAX Analysis Finds Treatment With TAXUS® Express2™ Stents More Cost Effective Than Bypass Surgery in Many Patients With Complex Coronary Artery Disease.

Their News Release page states that "Boston Scientific Corporation is not obligated to update the press releases and information contained in this section of the Site."

Boston Scientific purchased Guidant in 2006, and Cognis and Teligen are the first defibrillators launched under its own name.

Boston Scientific, one of the leaders in the medical device field, might think about the impact of allowing AP to share their news that will create anxiety, and saving their own website just for their good news.

If you don't manage your own reputation, others will manage it for you.

Brugada Syndrome and Prostate Cancer

This attention-getting title is partially explained in an abstract on a blog that posts about arrhythmias. Males with Brugada Syndrome are at higher risk for prostate cancer, even when other elements are factored in (age, smoking, etc).

As always, use caution when reading any online information about anything. In this particular abstract, I do see at least one familiar name, Dr. Charles Antzelevitch, who is Director of Research at the Masonic Medical Research Laboratory. So I would predict that this is probably a solid study.

If you are concerned, contact the authors or researchers that are listed following the article.

Online Article about Brugada Syndrome

I like to search the web for new or interesting information about Brugada Syndrome.

Here is a recent article that gives a good overview of the disease. It appeared in an online blog named maintained by the Faculty of Medicine at Odlar University located in Baku, Azerbaijan.

One symptom that I had not known before has to do with disrupted sleeping. The article mentions nightmares and thrashing during the night in some Brugada Syndrome patients. I know the cardiac event happens most frequently when a person is at rest, but wonder what, if any, relationship there is between the disrupted sleep and cardiac arrest from Brugada Syndrome. In other words, is the actual syndrome associated with the nightmares or thrashing, or are those symptoms independent of the disease?

Health Insurance



Dave (on the right; his dad is on the left) is about to graduate from college this spring. He has decided to take a year off and then attend graduate school to study mathematics. During that time, he'll have a job that he loves, working in a cafe near campus. He may even work full time, and be able to cover all living expenses plus the student loans that will come due in a few months.

What he will lose is health insurance. He's currently covered under our (his parents') plan, but as soon as he graduates, that will end his eligibility.

Dave can't really afford to be without health insurance. He needs to be under the continuing care of his cardiologist, and to continue to receive his meds.

We're looking into options that our state offers for the "gap" 20-somethings that fall into this category. Our daughter simply went without health insurance for 16 months, until she enrolled in graduate school and was eligible for their coverage.

Health insurance has become prohibitively expensive, and we already pay the full cost of our own health insurance and simply can't afford to pay for a new policy to cover him as well.

Medtronic recall - for those of you who have Medtronic ICDs, please read about the lead they are recalling. Check with your doctor if you believe you may have the lead that is causing concern. Medtronic, as usual, is forthcoming about the recall and being proactive with information.

Of course this is something to investigate, but to put it into some perspective,"If somebody is at risk of sudden death and they have an event, and they don't have a defibrillator, their mortality is 95%," Lindsay told Dow Jones Newswires. There is at least a 99% chance, meantime, that defibrillators will function properly when called upon to help such patients, he said, as quoted in CNN Money.com yesterday.

My son and husband are doing very well. I haven't updated the blog in a while because they have not had any problems or events, and I really haven't learned much new about Brugada Syndrome. Occasionally I read an interesting blog, usually written by a medical student. But I haven't seen new research published that points to anything of major significance.

I was very saddened to learn that a beloved member of the Brugada family, their sister Dolors, died suddenly at the age of 50 of sudden cardiac death. It is a cruel irony that the very condition these men are dedicating their careers to study, sudden cardiac death, should take one of their own. My deepest sympathy goes out to them, especially Ramon, whom I have the privilege of knowing.

Several months ago I attended a dinner dance in my town to raise money for the American Heart Association and awareness for Women's Heart Health. It was a beautiful event! The ballroom theme was elegantly black and red; the dress was formal or semi-formal. Small tables and chairs were arranged here and there, and a fabulous band played in the background as people mingled. The highlight of the evening was a fashion show, and local celebrities paraded down the runway in their dressiest red and black. From tuxedos to elaborate costumes, it was all there! Everyone in the fashion show had a personal, intimate connection to heart disease.

The event was organized by my good friend, Gwen Webber-McLeod, who lost a young beautiful sister to heart disease just a few years ago. A compelling and dynamic speaker, Gwen gave a riveting tribute to her sister.

I just want to share a photo of one of the fashion plates' heads (above, he kindly allowed his chrome to be painted with the evening's theme logo). His name is Jim, and he has an implanted defibrillator.

This November I hope that I can persuade my son and husband to stroll down the runway in their snazziest suits.

Random news from here

Dave is settling into college for the spring semester and seems happy with most things, including the courses that he's taking. Only drawback he's found so far is the food fare for a vegan. He stopped eating all meat products about six months ago. At home here it's been a welcome challenge for him because we have several stores and restaurants that cater to vegan diets, and he enjoys cooking new recipes. But living in a dorm and using the food plan, he will have to adjust somewhat to their offerings, combined with trips out to the local markets.

I run a community leadership program and we just completed our opening retreat for this year's class. Late one night, after the sessions had ended, someone in the class showed the movie, "The Core" which is a 2003 thriller with Hilary Swank. It looked like lighthearted fare after a busy day, so I settled in to watch it, too. The first scene is about 32 people who all die at the same moment within a 20 block radius. The only thing they have in common: they all have pacemakers! This was a wacky movie, and very far-fetched, but it did grab my attention. Yikes!

Healthwise things are quiet these days with both my husband and son. Checkups have been routine. I continue to seek out information and news about Brugada Syndrome and ICDs.

Brugada Syndrome Studies

I like to scan the web for new articles about Brugada Syndrome. Here are a few:

This first study takes a closer look at the presence of these telltale waves on ECGs of Brugada patients. The purpose was to prospectively evaluate the spontaneous ECG changes between diagnostic and non-diagnostic ECG patterns in patients diagnosed with Brugada Syndrome.

They looked at over 300 ECGs of 43 diagnosed patients, and noticed that over time, some ECG were non-diagnostic, and then the waves reappeared. Only one patient showed consistent patterns of the coved-type ECG pattern. This has significant implications for determining relative risk, and correct phenotyping.

Here is another study. Now this link is to another blog. Not to discredit we bloggers, but please remember to consider the source. If an article I site or quote from interests you, please check out the primary source and don't be satisfied with comments on a blog. I'm not a health care professional. Just the mother and wife of two people with Brugada Syndrome! Anyway, the study in this article is interesting because it's a look at 220 Brugada patients with ICDs and the frequency of shock therapy, both inappropriate and appropriate. Seems as though inappropriate shocks happened 2.5 more frequently than appropriate ones. That is just terrible! Still, I don't think anyone wants to consider not having an ICD if you have a confirmed diagnosis.

Article on Brugada Syndrome in November's Discover Magazine

That's right. A physician who runs an Emergency Department tells the story of a healthy man with syncope being sent home because his tests are normal. Even though another doctor notices something unusual on the ECG, the patient is sent on his way.

It turns out he has Brugada Syndrome. Don't worry, the ending is good. And this short article give a brief, no-nonsense summary of the history of the disease along with the reasons that its diagnosis can be so difficult. It is rare - he cites the statistic of less than one half of one percent of people in the United States may have Brugada.

Still that number is too large to ignore, methinks.

In other news, I listened to a speech by Phil Romano last week. He was the keynote at a local annual dinner. He is a restauranteur, and developed Fudruckers, Macaroni Grill, and others. He's from this town. Anyway, he's a good speaker and storyteller. He's also a venture capitalist, and his interest is in medical research. One idea he funded and sold to Johnson & Johnson (for millions, I might add) was for a cardiac stent. Currently, he's invested in the development of a chip that can read glucose levels transdermally. It could fit inside a watch, perhaps, someday. I am grateful for the Phil Romanos in this world. I don't know where we'd be without them.

Brugada Syndrome and Atrial Flutter: Is There A Correlation?

I've always wondered about the relationship between atrial flutter or atrial fibrillation and Brugada Syndrome.

In fact you can read article after article about Brugada Syndrome and find nary a mention of atrial flutter.

Back in 1985 my husband went to the doctor for a routine check-up and was discovered to have atrial flutter. The cardiologist told him that some people spontaneously develop conditions and since he was otherwise healthy, the best thing would be to manage the flutter with digoxin.

Fast-forward to 2004 when our son was diagnosed with atrial fibrillation at age 16. He was cardioverted back to normal rhythm. The photo above was taken after he was shocked. The paddles left burns on his chest and back. He was anesthesized first, of course! The pediatric cardiologist was very interested in the family history. And they decided to manage my son's rhythm with digoxin as well.

Six months later both father and son had ICDs implanted for protection against sudden death after their Brugada Syndrome diagnoses. And my husband also was ablated to repair his atrial flutter.

Today my husband had his first appointment with his new cardiologist, Dr. Ramon Brugada. (Yes, the very same Dr.Brugada whose brothers identified the syndrome originally and who has authored so many studies on the disease.) After studying the ICD readings Dr. Brugada reported that my husband has been in atrial flutter off and on over the past six months, sometimes for ten consecutive days. For now, we are taking a wait-and-see approach, and if he has more incidences he will have to be ablated again.

So back home I began to search around to see if anyone has studied this connection between atrial flutter and BS. I found one article and plan to keep looking for others. This article identifies a higher incidence of atrial flutter or fibrillation in BS patients than the general population, but the most interesting part of the study is that they conclude that the most serious cases of Brugada Syndrome are the ones with atrial flutter. Not something that makes me feel good!

When my husband told me about his appointment at first I was pretty concerned about the flutter - I thought he was out of the woods at least regarding his atrium! But apparently you can develop new flutters even after being ablated. At least we have some explanations now for some weird sensations he's been having, sometimes after he's been traveling long distances.

Dr. Brugada also saw our son today, because of the familial connection, and took ECGs of both men. He is so knowledgeable and interesting it is wonderful to know that he's my husband's doctor.

I cannot relax.

My son and husband were diagnosed with Brugada Syndrome over a year ago. There is no cure. They both have been fitted with ICDs (implantable cardiac defibrillators). They see their physicians on a regular basis for check-ups, and are doing fine. They seem to have adjusted well to this diagnosis and follow-up treatment, which mainly consists of checking their health, and keeping their ICDs functioning and up-to-date.

Brugada Syndrome really has no symptoms. There is no outward sign of the disease. So, the drama of the diagnosis and ICD has settled into routine management of a serious, but not limiting, condition.

Still I cannot relax.

Why?

Because I have two children. My son is 18 and daughter, 23 (above, 1989) and they share identical genetic make-up from their parents. In a few years, they will begin families of their own. What about their babies? Will they be screened for Brugada Syndrome after they are born? What if there is still no treatment or cure? Will they, too, face a lifetime of re-checks and surgeries for their ICDs as their little bodies grow?

And, what if they are screened and the Brugada pattern does not appear on their EKGs? Does this mean that they don't have the Syndrome - and we can relax? Or does it mean that it simply hasn't show up yet? And if that's the case, how often then should they be screened? Should the family also be concerned about sudden infant death, which has been associated with Brugada? How is the risk different for infants of Brugada patients and their siblings who manifest the Brugada pattern, and those who do not?

No, I can't relax until there is more known about this disease and about how to treat it. I can't relax for my husband or my son or my future grandchildren, or the grandchildren of other Brugada patients and their families.

If you have Brugada Syndrome, you might consider participating in the genetics study. You can read about it at www.brugada.org. And of course, I hope those who can contribute financially to the foundation established by the Brugada family, will do so!

Brugada Syndrome is the subject of at least two books, one published last year.


The Brugada Syndrome: From Bench To Bedside , by Charles Antzelevitch (editor), Pedro (Ph.D.) Brugada (editor), Joseph (M.D.) Brugada (editor) and Ramon (M.D.) Brugada (editor) is currently available to purchase at all the major outlets. It is a bit dry reading for the mainstream audience, but I think family physicians, internists, E.R. staff and pediatricians should own it to use as a reference resource in their office. And Brugada Syndrome patients and their families might find the book interesting on a personal level.

Not a huge seller, Amazon currently ranks it #1,479,777 in book sales.

Dave had a check up at the cardiologist office today.

Everything went well even though the doctor discovered one "event" that happened last month. His ICD picked up a reading of acceleration and began to track the heart's activity. Upon investigation, they realized that this happened the day Dave was packing up his car to come home for Thanksgiving break, and probably took the stairs a couple of times instead of waiting for the elevator.

That's ten flights each time.

His heart rate was fine, he didn't even begin to approach tachycardia. The doctor speculated that the heartrate threshold programmed in the ICD was a bit too low for someone Dave's age and activity level, and raised it.

So, he's doing well, the ICD is working properly and Dave doesn't have to go back again until May. Good news all.

Brugada.org has a new forum for those with questions about Brugada Syndrome.

Check it out!

Nothing much new to report here. I've become aware of how much trouble my husband has sleeping since he had his ICD implanted a year ago. He's always slept on his left side, and he's 54 years old. Well his ICD is on the left side of his chest and so he often tosses and turns all night. When he does sleep successfully on his left side, he said that the site of the implant aches the following day.

Not sure there is really a solution to this problem, but anyway, it's too bad. Maybe we'll look into some sort of sleep aid like a special mattress to retrain his body to sleep on the right side.

Oh...did I mention that when he doesn't sleep well...I don't sleep well either??

Here's Dave's brand new tattoo. After some scheduling glitches, he finally got to the tattoo studio on the day before Thanksgiving.