Survive Thrive & Lead

Dr. Donna Arnett, past president of the American Heart Association/American Stroke Association, has a couple of firsts to her credit: the first epidemiologist to be president of the organization and the first stroke survivor.

Dr. Donna Arnett

Dr.Donna Arnett, immediate past president of the American Heart Association/American Stroke Association, has a couple of firsts to her credit: the first epidemiologist to be president and the first stroke survivor.

A noted researcher and chairperson of the Department of Epidemiology at the University of Alabama at Birmingham School of Public Health, Dr. Arnett had a stroke in 1986 when she was only 27 years old. It was caused by a genetic clotting disorder that she did not know she had.

The Event

Just like every morning, she got up at 5:30 to let out her dog, Nikki. She felt odd, a little fuzzy, but chalked it up to the early hour. When she called Nikki back in, the words came out garbled, which she questioned, but went on to work. She was a clinical nurse at the time and knew the warning signs for stroke; she even thought that what was happening might be a stroke. Nonetheless, she dismissed the possibility because she was so young. There was no pain, and she could not imagine that there would be no pain involved in having a stroke.

At work the fuzzy feeling continued. She recalled, “I remember turning to my boss during the morning conference that happened at 7:30 a.m. every Friday and saying, ‘I think I’m having a stroke.’” He thought she was kidding.

As the morning wore on, symptoms kept piling up. By 9:30, she had started to drool; one side of her face was drooping; her speech was slurred; and she had weakness on her left side. “It’s an eerie feeling to have all these symptoms, knowing that they’re meeting all the criteria of a stroke, but not believing, because of my age, that it was happening to me,” Dr. Arnett said. By the time she got to the emergency room, she could no longer speak.

At the hospital, she had a CT scan, which didn’t show a stroke. Based on her symptoms, however, she was admitted to the hospital for several days. The CT scan was the standard of care in 1986, a decade before the clot-busting drug tPA was approved for treating acute ischemic stroke. An MRI three weeks later confirmed stroke signs. She received no treatment.

Her speech came back within two days, but she had lingering cognitive deficits. She had difficulty with math, and could not remember how to weigh patients on the balance-beam scale or work the exercise treadmill testing equipment, which was part of her job. In addition, she could not read a calendar. “I would say to my patient, ‘You need to come back in a week,’ and I didn’t know what a week was. I knew it had seven days, but I would have to put my finger on the calendar and count seven days.”

She quickly relearned her job functions, but the calendar was more of a challenge. “I guess reading a calendar and scheduling appointments involves more complex reasoning,” she said. “It literally took me months to work through that and be able to schedule again. And still to this day, I have to look. It’s hard for me to abstract out and remember what two weeks or three weeks is. I have to really look at a calendar.”

Within six months she had recovered completely, and she chalks that up to her age at the time.

The Cause

Three days before her stroke, Dr. Arnett had had a routine procedure. It went fine, but what she didn’t know was that she had a condition that left her prone to clotting after surgery. Clots had formed around the mitral valve in her heart. Over the course of that fateful Friday morning, some of those clots broke off and traveled to her brain’s temporal lobe, creating many small lesions. “I saw them on the MRI — white speckles that lit up my brain like brilliant stars lighting up the sky,” she said in a story for the AHA website.

Of course, considering the current scientific knowledge about stroke, Dr. Arnett was extremely fortunate. The clot-busting drug, tPA, had not yet been FDA-approved at the time of her stroke. tPA is a treatment that demands getting to the hospital as quickly as possible because it cannot be given more than 4.5 hours after stroke symptoms start. Back then, people weren’t as aware of the importance of calling 9-1-1 right away when they saw someone showing warning signs. 

“Now we know that it’s critical to act if you see someone you know — or even a stranger — showing signs of a stroke,” she said. Dr. Arnett found an expert who identified the cause for her clotting problem and prescribed warfarin, which she has been taking ever since.

An emotional deficit

There was another consequence to her stroke — depression. “It was not a fog because my brain wasn’t foggy, but more of a sadness that was almost chemical or biochemical, like a reaction in my brain to healing,” she said. “But I remember being very sad. I don’t know how much of that was part of the organic process of the brain healing and how much of it was just the sense that you feel of your own mortality when something as major as a stroke happens. It was at least a year before I felt really back to myself.”

She urges other survivors to be kind to themselves when they feel that sadness or depression because it is a natural reaction to stroke. “Don’t be afraid to talk to your doctor or minister or therapist about those feelings because they are real,” she said.

She urges caregivers to be patient with their survivors, especially if there is a speech disorder involved. More than 30 years later, she still recalls how frustrating it was to know what she wanted to say and not be able to say it. “Being unable to speak is an isolating and frightening place to be,” she said. “Patience is a must. Let your loved one heal in their own time.”

Medication Strategy

Because medication adherence is such an important issue for our readers, we asked Dr. Arnett what has helped her take her medication every day for more than 30 years.

“I always take my medication at the same time every day, and I associate it with another activity I do every morning, which is brush my teeth. So linking your regimen of pills to something you know you do every day can really help adherence. I also have the Monday-through-Sunday pillbox so that if I don’t remember if I took it, I can go back and make sure. If you have that thought, ‘Did I take my pills this morning?,’ you can go back and check.”

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