Loeys-Dietz syndrome: one family’s story

Learning to live with this genetic connective tissue disorder

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Dr. Rosemary Batanjski knows firsthand about Loeys-Dietz syndrome (LDS), a genetic disorder that affects the connective tissue in the body and often involves the aorta. She was diagnosed with the syndrome, along with many family members, including her own two children, her sister and two children, as well as her father (who died at age 43), aunt and cousin Nik (who passed away at age 31).

Dr. Batanjski’s grandmother also passed away in her late 40s, although a Loeys-Dietz diagnosis did not exist at the time. In fact, the syndrome was identified only 10 years ago. Until the discovery, many Loeys-Dietz patients were thought to have Marfan syndrome, a similar connective tissue disorder. Continue reading

U-M bicuspid aortic valve patient faces challenges head-on

Thelma Thompson proves to be "one tough woman"

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Photograph by Leisa Thompson

 

Thelma Thompson was never one to shy away from exercise. At 67, she was accustomed to playing 36 holes of golf in a single day. When she noticed she was tiring more easily, Thelma chalked it up to “age.” But she realized her diagnosis was much more serious than she suspected when she suffered a heart attack in 2013. Thelma was shocked to discover her coronary artery was 95 percent blocked. At the same time, she was diagnosed with a bicuspid aortic valve and an aneurysm of her thoracic ascending aorta.

Thelma underwent surgery for her blocked artery at her local hospital, and was then referred to the University of Michigan Frankel Cardiovascular Center in January 2015 for treatment of her bicuspid valve and aortic aneurysm. Continue reading

U-M patient counts blessings each Christmas

Catching up with U-M patient Don Heydens after treatment in 2007 for life-threatening aneurysm

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Each Christmas Eve, Don Heydens and his wife, Ellen, reflect on what could have been the last night of Don’s life. He’s been marking the anniversary of his descending thoracic aortic aneurysm for 10 years now and each time, he counts his blessings that he’s alive.

On Christmas Eve 2004, Don returned from a relative’s home and found he had plenty of gift-wrapping to do, keeping him up later than normal. For this, he is grateful. “I began to lose feeling in my hands and feet, then in my legs and arms,” he says. “If I had gone to bed, I may not have been aware of what was happening.” Don called his sister, a registered nurse, who understood the severity of his condition and advised him to call 911 immediately. Continue reading

You’ve been diagnosed with an enlarged aorta: Now what?

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If you’ve been diagnosed with an enlarged aorta, you likely have many questions about your condition: How big is too big? When should I be worried? What does “watchful waiting” mean? Are there any early warning signs before it bursts?

Most of the answers to these questions depend on a variety of factors, including your age and body size, medical history and the position and size of your aorta, among others.

University of Michigan Frankel Cardiovascular Center patient Bob Stephens found he had all of these questions and more when diagnosed with a total of five aortic enlargements.

“It’s awfully scary, but you don’t have a choice,” Bob says. “When I was first told about my condition, it worried me, but I knew the U-M team of doctors was watching me closely, especially my abdominal aortic aneurysm, which was large.” Bob admits that “watchful waiting” can be stressful, but “I knew I had the right people taking care of me.” Continue reading

5 ways smoking hurts your heart

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University of Michigan cardiologist Dr. G. Michael Deeb wants his patients to know something: Nicotine is toxic not only to the lungs but also to the heart. “When most patients think of the dangers of smoking, they think about the lungs,” says Dr. Deeb. “But cardiovascular disease is the number one killer in Michigan, and smoking is accelerating the problem.”

According to the American Heart Association, as many as 30 percent of all coronary heart disease deaths in the United States each year are attributable to cigarette smoking, and the more you smoke, the greater your risk. But even people who smoke fewer than five cigarettes a day can have early signs of cardiovascular disease. Continue reading

Caring for arteriovenous malformation (AVM) patient

Laurie Sell never gives up hope as she helps her husband work toward recovery

caregiver heart blogLaurie Sell credits faith and a sense of humor with keeping her and her husband pushing forward after Tom, in the prime of life, suffered an arteriovenous malformation or AVM — a burst blood vessel that caused massive bleeding in his cerebellum, robbing it of oxygen. An AVM is also referred to as a hemorrhagic stroke.

The active 51-year-old husband and father of two was quickly airlifted from his local hospital to the University of Michigan where doctors performed surgery. Tom spent the next 2½ months at U-M, unable to eat or swallow and breathing with the help of a ventilator.

When an AVM occurs, vessels typically burst at a weak area in their walls, often at a bulging spot called an aneurysm or a tangled web of abnormal vessels. AVMs can occur in different organs of the body, but brain AVMs are the most problematic, often causing stroke-like results. Continue reading