She shouldn’t be alive.
Wilodene Gist understands that. The way her heart functions, she should have been dead as a young woman. Dying young was common in her family — aunts, uncles, cousins, even her father all died mysteriously in their 20s or 30s.
Gist was in her 70s before she was diagnosed with Long QT Syndrome, a genetic defect that quickens the pace of the heart until a person passes out. Left untreated, it can deteriorate and ultimately cause death.
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Now 90 years old, she realizes how lucky she’s been.
“I lived for a long time before I even knew what was wrong,” she said. “The good Lord was with me. I don’t know how I made it this long.”
Gist and her daughter, Franklin resident Jackie Renfrow, hope to use their own situation and family tragedies to educate people about the dangers of genetic heart defects like Long QT. They themselves were only diagnosed after Renfrow’s children died after passing out.
Jimmy Brackett died in 2000 from heart failure caused by Long QT Syndrome. Crissy Brackett died in 2002.
The condition can be managed, if doctors discover it in time. So the two want people to know that even the smallest sign of trouble should motivate people to see a doctor.
“It’s so tragic that so many people have died from this. You don’t want to mess around. Go get it checked,” Renfrow said.
Long QT causes about 3,000 to 4,000 sudden deaths in children and young adults in the U.S. each year. According to the National Heart, Lung and Blood Institute of the more than half of the people who have untreated, inherited types of the disease die within 10 years.
The danger with Long QT Syndrome is that is can be so hard to identify. Symptoms such as fainting and high anxiety can be attributed to different causes, and rarely show up until late childhood or early adulthood.
For Gist, her first episodes occurred when she was 10 years old. She and her family lived on a farm in rural Kentucky in the 1930s. The strange condition of losing their breath or fainting was a well known affliction to the family.
Her father, William Sears, would have spells of breathlessness, as well as bouts of anxiety, which has since been proven to be associated with Long QT Syndrome.
In 1932, Sears died in his sleep. He was 28 years old.
Besides her father, uncles, cousins and other relatives had died in a similar fashion. Though there was no way to diagnose Long QT at the time, their deaths fit into what doctors now know about the disease.
Starting about age 10, she would feel herself blacking out and losing consciousness, but would often be able to steady herself and sit up.
One day, she was standing by her window. The next thing she remembers, she was on the floor with her grandmother screaming over her.
“I don’t know how long I was out. That’s the first one I remember,” she said.
As Gist grew older, she found that the blackouts and unconsciousness came on sporadically. People initially accused her of making things up.
Not until she was in her early 20s, as she started having children, did the blackouts get worse. Any time she tried to go to sleep, she’d have a seizure or a spell. She would scream and pass out at random times.
Being startled or surprised was a sure cause to bring on a seizure.
“I used to wrap the phone up at night, because the ringing noise would bring an attack on,” she said.
Doctors tried to treat her in a variety of ways. They believed that it was epilepsy. At one point, they gave her blood transfusions, hoping that would cure her of the unexplained malady.
But Gist learned to work around the episodes. She raised four children and tried to live life as best she could. She worked for 27 years before retiring.
“It never really stopped me. If I had a seizure, I’d just call in sick,” she said.
One of her doctors tried alternative methods of controlling the seizures. He would give her a shot of vitamin B12, which keeps the body’s nerve and blood cells healthy and helps make DNA.
Those sessions seemed to have an effect, Gist said. She was much more calm after receiving the shots.
Gist was 72 before doctors pinpointed what was wrong with her. One morning, she was overwhelmed by a sense of anxiety that she couldn’t shake. She asked a friend to come over and take her to the hospital, where she was admitted.
Three weeks after, her doctors finally had an answer for her: Long QT.
“Mom always said her heart beat fast. We all thought it was nerves, we thought we had incredibly bad nerves,” Renfrow said. “But the doctors said she had Long QT Syndrome, which is known for striking and killing young people, and of course, that’s when it all clicked.”
With a cause to their long health nightmare finally identified, Gist and Renfrow searched for ways to manage the disease.
Beta blockers reduce their blood pressure, and defibrillators are in their home in case their hearts stop beating. Monitors in their homes go off if their heartbeats become off-kilter.
“How she lived to 90, we don’t know,” Renfrow said.
On Dec. 8, Gist celebrated her 90th birthday. The family gathered with a cake and presents, while she wore a special sash and crown the next day during lunch at the Willard.
Her birthday was also feted by the SADS Foundation, which focused on sudden arrhythmia death syndrome such as Long QT. They organization ran a feature about her on their website.
The celebration underscores the tragedies in Gist’s family and in many other families where unexpected deaths have occurred. By sharing her story, Gist hopes that people will pay better attention to health issues impacting them and seek out answers.
“Why should I have lived to be 72 when all of these young people were dying?” Gist said.
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What is it: A genetic defect that impacts the heart’s electrical activity. It can cause sudden, uncontrollable, dangerous problems with heart rate or rhythm in response to exercise or stress.
How prevalent is it: Experts think that about 1 in 7,000 people has Long QT, though no one knows for sure because the condition often goes undiagnosed. Long QT causes about 3,000 to 4,000 sudden deaths in children and young adults each year in the U.S.
Symptoms: Unexplained fainting, as well as unexplained near-drowning and unexplained cardiac arrest.
Ways to live with Long QT: Lifestyle changes and medicines can help people prevent complications and live longer. Those include:
- Avoiding strenuous physical activity or startling noises.
- Adding more potassium to your diet, as your doctor advises.
- Taking heart medicines called beta blockers that help prevent sudden cardiac arrest.
- Having an implanted medical device, such as a pacemaker or implantable cardioverter defibrillator, to control abnormal heart rhythms.
Information: nhlbi.nih.gov/health-topics/long-qt-syndrome
— National Heart, Lung and Blood Institute
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