And It's About Time There Was Some Support For Cushing's!
Cushing's didn't rob woman of her fertility
Photo by Scott Neville / The Free Lance-Star
Jayne Kerns holds her 5-year-old daughter, Catherine, and 2-month-old son, Brian, at their home in Spotsylvania. Kerns, who was diagnosed with Cushing's disease two years ago, became pregnant despite her illness, which usually makes women infertile.
By MARCIA ARMSTRONG
The Free Lance-Star
Date published: 3/9/2004
THERE WAS A moment in 1999 when Jayne Kerns just knew that something was wrong with her body.
The Spotsylvania County resident was tired and irritable. Her muscles hurt. Her hair was falling out.
The silvery stretch marks acquired while pregnant with her daughter Catherine turned into angry, purple streaks. Kerns wasn't losing the pregnancy weight, either. In fact, the pounds were still piling on.
"I was walking every day, eating right, doing the 'Best Odds' diet," said Kerns, 40. "But, it wasn't helping. I just didn't feel right."
One doctor said Kerns' complaints were not unusual for a postpartum body. When another told her to exercise more and eat less, she kept a diary of the fat, carbohydrate and caloric content of everything she ate and began walking a mile three times a day.
But, a year later, Kerns was even heavier and her health was getting worse.
The slightest bumps caused her skin to bruise. Hair began to grow on her face and arms. Her eyesight was plagued by double vision, tunnel vision and spots. She had trouble concentrating and was beset with short-term memory loss. Her blood pressure skyrocketed to stroke level. Her menses stopped.
Doctors tested for lupus, diabetes and fibromyalgia, but the results were negative. One physician gave up on a diagnosis, telling Kerns he didn't have time to listen to her roster of complaints. He referred her to a psychiatrist for a prescription for antidepressants. Another told her to see a nutritionist.
By then, Kerns' muscles hurt so badly it was hard for her to hold Catherine or let her climb onto her lap. She couldn't get down on the floor to play blocks with her daughter or push her on the swing set. Bedtime became a struggle.
"I'd go upstairs and she'd run downstairs, and there was no way I could grab her and carry her back up," Kerns said.
Kerns' appearance took on that of a much older woman, even though she was only in her mid-30s. She had a hump in her back. Her thinning hair was turning gray. People who didn't know her thought she was Catherine's grandmother.
Then, in May 2000, a physician's assistant told Kerns her symptoms matched those of Cushing's disease, a hormonal disorder caused by the overproduction of cortisol, the "fight or flight" hormone needed in times of stress.
The diagnosis was a long shot, as the disease is rare, affecting only 10 to 15 people out of 1 million each year, according to the National Institutes of Health.
But, tests revealed that Kerns' cortisol levels were 25 times higher than normal.
The physician's assistant was right. Kerns had Cushing's.
A tumor on Kerns' pituitary gland was causing her adrenal glands to produce the overabundance of cortisol, but the mass was so small doctors couldn't find it.
Kerns had four options.
Doctors could remove her pituitary, taking the obscure tumor with it. Or, they could zap the gland with gamma-knife radiation. The third choice was to put Kerns on medication that would lessen cortisol production. And last, she could have her adrenal glands removed.
With any of the choices, she was unlikely to ever have another baby.
"Usually, people who have Cushing's are infertile because the disease alters the normal endocrine milieu of the body and interferes with ovulation," said Dr. Fay Redwine, a perinatologist with Richmond-based Central Virginia Perinatal Associates.
In fact, it is so rare for a woman with Cushing's disease to get pregnant that Redwine said she expects to see only two or three such cases during her medical career.
Kerns took the cortisol-suppressing medication until it began to destroy her liver. Then, she had her adrenal glands removed.
Immediately after the surgery, Kerns' eyesight cleared. Her blood pressure dropped to normal levels. And, three months after the operation, something else changed, too.
Kerns became pregnant.
"That was a surprise, a big surprise," she said. "I was happy to know that I was still fertile."
The pregnancy lasted only 10 weeks before ending in miscarriage. But, 15 months later, Kerns was pregnant again.
"The first thing I felt was total elation, then total fear of losing the baby," she said.
Her anxiety was warranted, Redwine said, because the fetus of a mother with Cushing's is at much greater risk of intrauterine fetal death and pre-term birth.
But, it was during this pregnancy that Kerns began to feel almost normal again.
Her muscles quit aching. Her moods leveled out.
"My body somehow said, 'We're going to have this baby, so we have to be healthy,'" she said.
Kerns' obstetrician, Dr. William Hamilton, increased the dosage of Kerns' hydrocortisone pills to cover the stress pregnancy put on her body. Redwine monitored the baby's growth and movements.
And, on Dec. 15, 2003, Brian Matthew Kerns was born, full-term and healthy.
"He is our miracle baby," Kerns said.
Cushing's has taken a permanent toll on Kerns' life.
The purple stretch marks will never go away. Weight will always be a problem.
Kerns must have a magnetic resonance imaging scan every six months as doctors keep looking for her pituitary tumor.
Kerns regrets that she was so sick when Catherine was an infant and toddler that she couldn't devote herself to mothering. And, it's hard for Kerns to keep from crying when Catherine, now 4, doesn't recognize her in the pre-surgery pictures in the family photo albums.
Even so, life is still very, very good.
Kerns spends her days cuddling her son and playing with her daughter. She's getting stronger. She feels much better.
She's thankful that the only effect the disease had on her relationship with her husband, Robin, was to make it stronger.
"Some men can't handle it," Kerns said. "I've read stories online about women who are getting a diagnosis and a divorce. But, Robin stood by me through everything: the surgery, doctor's appointments, all the questions.
"He has kissed my stretch marks and said 'No matter what happens, you are still a beautiful person.'"
But, for all it's taken from Kerns, Cushing's has given her something back: the courage to speak out.
She recently contacted Gov. Mark Warner's office to enlist his support of a national day for Cushing's awareness.
And last September, she approached a woman in the grocery store who she thought looked like a mirror image of herself: the same moon face, the same upper-body obesity, the same hairy arms.
"Excuse me," she said to the woman. "I have to tell you my story."
"I was a little taken aback," said Laura Zastrow, who lives in Locust Grove. "I'd never heard of Cushing's."
Zastrow, 34, told Kerns she'd been looking for a diagnosis for her weight gain, mood swings and stretch marks for four years.
Kerns referred Zastrow to an Internet Cushing's support group that features a lengthy list of Cushing's symptoms.
"I couldn't believe it," Zastrow said. "It was like me, all the symptoms, everything."
Tests showed that Zastrow has a tumor on her pituitary. But, unlike Kerns' tumor, doctors know exactly where it is. She will have it removed this spring.
Zastrow calls Kerns her guardian angel.
"If she hadn't said anything," Zastrow said, "I'd still be wondering what in the world is wrong with me."
For more information about Cushing's disease, visit the Web site cushings-help.com.
To reach MARCIA ARMSTRONG: 540/374-5000, ext. 5697 firstname.lastname@example.org
Jayne Kerns is a member of the Cushing's Help and Support Message Boards.
Jayne has seen several potential Cushies and spoken to them. Many have contacted their doctors and turned out to have Cushing's Syndrome. She was also instrumental in setting up the first Cushing's Awareness Day and continues to provide Cushing's Awareness tables at local health fairs.
One of the patients Jayne urged to check out Cushing's is Laura Zastrow. In the article about Laura, all the credit is given to Jayne.
Jayne answered questions in an online Voice Chat January 31, 2008 at 6:30 PM eastern. Archives are available.
Jayne and Robin also hosted a Special Cushing's Awareness Day live chat April 8, 2008. Archives are available.