Story URL: http://news.medill.northwestern.edu/chicago/news.aspx?id=123401
Story Retrieval Date: 7/24/2014 4:41:04 PM CST
Young Hearts for Life is a program that educates parents on how to conduct EKG screening, and then offers free cardiac testing for high school students to find out if they have heart diseases that they should be monitoring, and possibly treating.
The first year of college is a time of transition – but one Iowa State freshman playing in the hockey minor leagues faced a larger adjustment than most.
The 19-year-old nephew of Michael Custode, a firefighter from Arlington Heights, dreamed of playing in the National Hockey League or becoming a fireman like his uncle. That all changed when doctors told him he had a life-threatening heart disease and had to stop all strenuous exercise.
“Pretty much all his dreams and aspirations, career-wise, that he had hoped for, were taken away,” said Custode. “This diagnosis turned his life upside-down.”
He said his nephew’s mother (Custode's sister-in-law) died of a heart attack at 40 about 18 months ago. She had the same illness as her son: hypertrophic cardiomyopathy, a disease where muscles in the heart thicken, blocking the flow of blood through the body.
There are often no visible symptoms. But fatigue and chest pain are common due to an irregular heartbeat than can be detected and treated. It’s also responsible for one-third of sudden cardiac deaths in the United States.
After his sister-in-law’s heart attack, Custode said members of her immediate family got tested. He said his nephew hadn’t mentioned feeling any symptoms before, but the diagnosis came back positive. Now his nephew is waiting for doctors to implant a defibrillator in his heart next month and trying to find a new direction in life.
Custode’s nephew is far from alone. This disease occurs in about one in every 500 people. One percent of those cases end in sudden cardiac death.
Dr. Joseph Marek of west suburban Midwest Heart Specialists said more people should be aware of this condition and others that can lead to sudden cardiac death. He developed a program called Young Hearts for Life, which is in use by two foundations to provide free cardiac electrocardiogram screenings to students at approximately 10 high schools every year in Lake and DuPage counties. Electrocardiograms can detect symptoms such as irregular heartbeats, which may lead to sudden cardiac death.
A similar system is in place in 12 European countries but has not yet been implemented nationwide in the United States because of concerns about cost and accuracy. In America, physical exams and a family history are the currently accepted methods of screenings for heart diseases, Marek said.
Cardiologist Dr. John Beshai of the University of Chicago explained that in hypertrophic cardiomyopathy the actual heart muscle fibers are in disarray due to genetic abnormalities. This can disrupt electrical signals to the heart, resulting in an abnormal heart beat that can cause patients to pass out or die suddenly.
Genetic testing can also be used to test for hypertrophic cardiomyopathy. Beshai said he strongly supports this method of testing when combined with patient history. He said genetic testing has been offered commercially for several years and is fairly accurate.
"We can actually identify if patients have a gene that codes for the abnormality. When you combine the information from genetic testing with an ultrasound, and clinical history, patients at highest risk can be identified and appropriately managed," said Beshai.
But Marek’s program is focused on bringing affordable, broader screenings to the public. Several years ago, he said he felt something more should be done about what was happening, so Midwest Heart Specialists started offering echocardiograms, an ultrasound that picks up sound waves as they bounce off various parts of a patient’s heart. But echocardiograms were not cost-effective for screening.
The project was revisited in 2004, when Marek learned about the success of EKG screenings being offered in Italy for free to athletes, a program that started there in 1982. He began offering EKGs at area high schools.
Marek’s wife, Kathy, a cardiac nurse serves as volunteer coordinator for Midwest’s screening program. She said she first became involved because she thought it was a great cause.
“I can’t imagine anything worse than being a parent who has lost a child. If I can help be part of the process to help prevent that, I’m very happy to do it.”
About six months after Young Hearts for Life started, Marek heard about Mary Beth Schewitz of Lake Bluff, a woman who was starting another foundation seeking to do free screenings. She had recently lost her son to heart failure and felt that other young adults should be tested. She created the Max Schewitz Foundation in honor of her son Max, who died at age 20 while developing educational programs about reptiles for his business, Max and the Wild Things.
The Max Schewitz Foundation uses the Young Hearts for Life program but has purchased their own machines and recruits its own volunteers. The foundation has held five screenings in Lake County, including northern suburban Lake Forest High School on Wednesday.
In the Young Hearts for Life program, through both the Max Schewitz and Midwest Heart Foundations, a total of about 25,000 EKGs have been completed. The screenings identified a dozen students have needed procedures to treat life-threatening conditions.
Cardiologists said some people with hypertrophic cardiomyopathy live healthy lives barely affected by the illness and there is a continuum of treatment options designed to improve conditions of varying severity.
Treatments can include taking medications that reduce the size of enlarged heart muscle and increase blood flow. A more aggressive option is ablation surgery, which removes damaged heart muscle tissue that can block blood flow. The implant of a cardioverter defibrillator - that can deliver electrical shocks and reset heart rhythm to correct what might be fatal abnormalities - may be advised in some cases.
Wendy Conley-Cool, 28, received this device preemptively five years ago to treat hypertrophic cardiomyopathy. Before the device was implanted, she would have chest pain after large meals, a known symptom of the illness. But symptoms became more severe after the surgery, said Conley-Cool, who works in marketing.
“I just wish I had waited, but then again, if I had waited and didn’t get it, you never know what could have happened,” she said.
Child psychologist April Toronyi died of hypertrophic cardiomyopathy when she was 30 while waiting for a heart transplant. Doctors has told her she was next on the list.
She had previously received ablation surgery but that proved not to be a permanent solution, said her husband Tim Toronyi,who works in Chicago.
“The ablation surgery did work, but the heart was such a mess that it just started building back up in different areas, causing other problems,” said Tim Toronyi. “When she came out of the ablation, maybe I’d say within a month, there was a world of difference in how much more active she was and how much better she felt.”
But to help people find out if treatments such as those Toronyi and Conley-Cool received are needed, Marek’s program only requires a four-minute test.
Volunteers who operate the EKG machines during a screening receive training during a 90-minute session. In the first half, a cardiologist gives a lecture defining sudden cardiac death and explaining why it is important and how to perform an EKG by attaching electrodes and leads to a student’s chest, arms and legs. Then, volunteers practice on students.
On the actual screening day, each student enters a booth and volunteers place sticky electrodes over the chest, arms and legs. Leads are attached to these electrodes, which allow the EKG machine to record the electrical pattern of a heartbeat from multiple points. But at Lake Forest High School’s Wednesday screening, one student said school participation is far from widespread.
“I really don’t think a lot of people are doing it, at least not from my gym period,” said Jack Carpenter.
Lisa Salberg, co-founder of the Hypertrophic Cardiomyopathy Association in Hibernia, N.J., said her organization is not advocating EKG screenings as a surefire method of finding the disease.
Salberg said not enough programs emphasize that even if an EKG reading is normal, there still might be a possibility of hypertrophic cardiomyopathy.
She also said that it’s important for all involved to remember that EKGs don’t catch everything.
“If, in fact, the parents who are consenting to have their child participate in this study understand that the possibility still exists for hypertrophic cardiomyopathy even if the heart is normal, we’re okay with that, as long as they’re being informed,” Salberg said.
But Midwest Heart Specialists doctors said that while the EKG isn’t a perfect test, about 80 percent of hypertrophic cardiomyopathy cases can be detected with it. And it’s better than doing nothing.
After high school students are screened, the reading goes to Marek and his colleagues. They examine them and send the results to the student's home. When the cardiologists analyze the screening results, they aren’t looking for a specific blip in a student’s heart pattern, but at a more comprehensive level, they examine the rhythm as a whole.
“When I look at you, I know I am looking at you,” said Marek, who personally reads 90 percent of the EKGs performed under Young Hearts for Life. “I don’t have to say your ear is this shape, your hair is that color. I look at you and I know what you look like. With an EKG, it’s the same, we know a normal EKG when we look at it,” he said.