Melaine Zeigler isn’t supposed to be here.
As a child, she was the sick girl and she continued to be the sick girl as a young, married woman in her 20s. At 28, she was pregnant and still sick, confined to a hospital bed for the last 18 weeks of her pregnancy to avoid preterm labor. Her son was born healthy, but Melaine stayed unwell. Her in-laws often had to swoop in and take care of her toddler because she was chronically ill.
Then she contracted pneumonia seven times in one year.
Doctor appointments? She had hundreds through the years. One physician chalked up her poor health to the fact that she had a preschooler at home. Yet other women, including the doctor’s own wife, also had a preschooler but not the stream of illnesses that required antibiotics and hospital stays. In her chart, the doctor wrote: “Patient thinks something might be wrong with her immune system.”
The fog started to clear after Mayo Clinic reviewed her blood work. It was 1998 and Zeigler was 32. The first set of results left the clinic puzzled.
“They said, ‘You would not be alive if these were accurate results. You must come back in and have these repeated.’”
Zeigler redid the tests and all the results came back the same. Except for the pregnancy test, which had flipped from negative to positive.
As doctors zeroed in on a diagnosis of chronic variable immunodeficiency (CVID), they were blunt about the outlook. One sat down next to her on her first day of immunoglobulin treatment and said the goal was to give her five years of life. With five years, she could give birth to her unborn baby and stay alive long enough to see him go to kindergarten.
“It really felt like a death sentence,” Zeigler said.
Her early years of treatment were also a struggle. She remembers crying at the sixth needle needed to do an intravenous (IV) infusion. And she recalls the heavy burden her illness laid upon her and her young family.
“I was a very negative person. I call it ‘Big Bad Mama.’ That was my alter ego that would come out and she yelled a lot. She was very growly,” Zeigler said. “When we’re sick, fighting to survive, it takes a lot of energy.”
Back then, Zeigler went from “dying to surviving,” but hadn’t graduated to “thriving,” where she is now at age 52. In time, she was well enough to practice yoga and 13 years ago became an instructor.
“If I didn’t tell you I had CVID, you wouldn’t know,” she recently told CSL Behring employees during a visit to its manufacturing site in Kankakee, Illinois.
A new subcutaneous therapy Zeigler began in 2002 turned out to be the right one for her. Today, she needs an antibiotic to fight an infection about once a year, not unlike someone with a typical immune system. Her sons are grown up. Stad is a Ph.D. student and Hayden is a college sophomore. Melaine lived to see it all. Now, she and her husband Scott, a pharmacist, are making plans for the future.
“We get to live a full life. We’re having date night. We’re learning to live as empty nesters,” she said. “We are finding us again. We are remembering even though life with chronic illness can be challenging, it is worth the journey together.”
She encourages her fellow patients to “find out what wellness - in the midst of all the messiness - looks like for you and your family.”
Who could have guessed that so many years after her dire diagnosis, Zeigler would travel to Switzerland to meet scientists and talk about her illness? And no one could have predicted that the baby she was carrying, when she was so sick, would grow up to pursue a doctorate in immunology and autoimmunity at Albert Einstein Medical College. That son, Stad, went along with Ziegler earlier this year when she traveled to CSL Behring’s manufacturing location in Bern, Switzerland. There, she met with scientists so they could learn more about what it’s like to be a patient.
“Fear doesn’t define me anymore,” Zeigler said. “Hope does.”
We asked Melaine to tell us what the most interesting thing was about her. Her answer, which you will find below, was a little unexpected, yet perfectly fitting for someone who has endured so many storms.
Age of diagnosis:
32, while pregnant with our second son.
I’m proudest of:
Being a wife for 32 years, a mother of two amazing adult sons and a Voice2Voice patient advocate.
Goal I’m striving toward now:
Living in the moment with joy, as well as planning for a full life with a future of exciting adventures yet discovered.
Best advice anyone ever gave me:
Take the Next Right Step. Move forward and remember to look around at all the beauty life has to offer instead of getting bogged down in the daily management of chronic disease.
Something I learned the hard way:
How to manage living with chronic illness, without it defining my character and consuming my life.
My idea of the perfect day:
Being at the ocean with my family, watching the waves and feeling the warm sand between my toes, while sipping a tasty margarita with the sunset in view.
My most prized possession:
Scrapbooks of our kids growing up. They’re filled with photos of our entire family showing memories of love, life well-lived with blank pages of adventures yet to come. I started these books when the boys were babies as I wanted them to know how much they were wanted and loved and I didn't know if I would be around to tell them.
Something most people don’t know/understand about yoga:
It is a wonderful way to connect the mind, body and spirit together as a form of exercise to improved health. Yoga is never mastered, it is a practice. Each time you unroll the mat is a new experience.
Something most people don’t know/understand about CVID:
There are more than 350 known types of genetic diseases associated with a breakdown of function in the immune system. Treatment is often with immunoglobulin replacement therapy made from donated plasma. These are life-saving medicines. More people need to know that donating plasma saves lives for our patients and saves families as we can live full lives with treatment.
Most common question people ask about my illness:
"You look so healthy, what could be wrong with you?" "How did you catch your illness?" "Do your kids have what you have?" "Is it contagious?"
My advice to anyone who’s living with CVID:
1. Get educated about your disease.
2. Get connected with valuable resources from CSL Behring and the Immune Deficiency Foundation and discover you are not alone.
3. Become your own best advocate and a valuable member of your healthcare team.
4. Allow hope to grow and live each day to the fullest.
5. Choose joy and let love win every time.
6. Smile as much as possible as it creates inner peace.
The most interesting thing about me is:
I really enjoy looking for sea glass and like to make art from it. Someone else's broken bottles are my treasures after the water, sand and wind polish off all the rough edges. I have made jewelry and picture frames from the beautiful colored sea glass I find.