More than 30 years after being diagnosed with Type 1 diabetes, Jan Berry has a new lease on life.
Indeed, Berry has a bright future after receiving a pancreas and kidney transplant through the Alabama Organ Center in Birmingham. Four years ago, she was in total kidney failure, but that is in the past.
With a smile that lights up a room, Berry has a laugh to match. Listening to her erupt in bubbly laughter, Berry’s happiness is infectious: Others laugh aloud with Jan Berry. As Berry puts it, “You’ve just entered the ‘Janiverse.’”
Despite facing death several times during her four decades, she maintains a positive outlook.
“I look back now, and know my early approach to life and my attitude helped me make it through,” she said. “I love that my Janiverse keeps expanding. The gift of life gave me the opportunity to expand my world and to contribute again.”
Fighting the good fight, with faith and joy
While she was waiting for a kidney transplant, Berry didn’t dream that she’d also receive a pancreas. Berry’s new, healthy pancreas ended her struggle with Type 1 diabetes, though she still has some lingering effects.
“I was diagnosed when I was 8,” Berry said. “They said that a virus attacked my pancreas and shut it down, so my pancreas no longer produced insulin. From that day forward, I was dependent on insulin injections to stay alive. Keeping spare medical supplies with me at all times for my shots was part of my routine.”
Her life revolved around finger-sticks, testing blood sugar levels, giving herself insulin shots, careful monitoring of her diet – and complications. Despite her dedicated efforts, Berry had many difficulties managing her disease.
“Type 1 diabetes is chronic – you are compromised with this disease,” she said. “It’s a daily battle. No matter how hard I tried, I had problems. That’s why it’s so important to be compliant with what you’re supposed to do.”
In eighth grade, during a family trip to Walt Disney World, Berry became extremely ill. Although she took care of herself and adhered to a strict health regiment, Berry went into severe diabetic ketoacidosis, which occurs when blood sugars have been too high for too long, causing a buildup of acids in the blood. Doctors could never give the reason for this complication, but this is an example of the struggles Type 1 diabetes can cause.
“I kept throwing up and throwing up,” Berry remembered. “Imagine my parents having to fly up here in a hurry with a sick child. I was in a coma for a week at Children’s Hospital.”
Despite the challenges of dealing with illness at that young age, Berry wouldn’t let diabetes hold her back. Her parents never made her feel that she couldn’t do things. She performed in dance recitals, took part in theatre and was active throughout her school years.
“When I would find a contest to enter, I’d ask my parents for forgiveness, rather than permission,” she said, with a grin. “I always thought, ‘Why can’t it be me, if I work hard enough?’”
Life seemed to sail along. But in her late 20s, for unknown reasons, Berry contracted a severe infection in her right foot.
As Berry got older, complications from the disease became more difficult, including severe neuropathy of her feet and legs, wounds that would not heal and infections that spread into her bone, requiring intense antibiotic treatments for months, requiring a picc line.
“They don’t know where the infection came from, but I’m so grateful the treatment worked,” she said. “If it hadn’t been successful, I would have lost my foot,” Berry said.
But more problems loomed. In her 30s. After suffering years with diabetic retinopathy, requiring many laser eye surgeries to manage the damage to blood vessels in her eyes, Berry was shocked to learn that she would require a major eye surgery, a vitrectomy , to remove the gel-like fluid behind her left retina.
“UAB’s Callahan Eye Hospital saved my eye,” Berry said.
After those health scares, Berry’s endocrinologist announced that she was in total renal failure.
“He said that I needed a transplant yesterday,” Berry said. “That was the news that knocked me off my feet. I was 37 – I was in shock. It was difficult to grasp when I knew I had worked my entire life to manage my diabetes.”
A nephrologist evaluated Berry and she was added to the organ transplant list at UAB. She was a good candidate for a kidney and pancreas transplant. Berry went for evaluations at Emory University Hospital in Atlanta and Vanderbilt University Medical Center in Nashville, and was placed on transplant lists at both facilities.
Her health situation was so dire that, when an evaluator asked Berry, “How are you standing here?”, she could only answer, “By the grace of God.”
“It was a true time of testing for me: My Dad passed away, I had major eye surgery and I had kidney failure,” Berry said. “Those were very dark times. Sometimes before I went to sleep at night, I’d pray, ‘Just let me wake up.’ I was that sick.
“I look back, and I know now that my faith and family, along with my approach to life and my attitude were what got me through,” Berry said. “I went back to that mentality from when I was growing up: ‘Why can’t it be me to get that call?’ That was my attitude while I was waiting for my transplant.”
Because dialysis is invasive, Berry’s nephrologist worked to postpone the treatment for as long as possible.
“He told me, ‘When I tell you it’s time to go on dialysis, it’s time,’” she said. Her nephrologist scheduled the vascular surgery necessary to receive dialysis.
In the nick of time – May 18, 2011 – Berry got the call for her transplant. It was a lucky break that Berry, who has a rare blood type, was matched in just over a year.
Through the years, Berry has sent letters to the family of her organ donor, with the organ center serving as liaison.
“I’ve never heard from the family, but I want them to know how much their loved one’s donation has meant to me and my family,” she said.
The Alabama Organ Center makes donation possible
Ann Rayburn, director of Education and Referral Services for the Alabama Organ Center, noted that patients may wait 3 to 7 years for a kidney transplant, with about 3,000 Alabamians on the list.
“We want more people to consider being organ donors,” Rayburn said. “We have one of the longest waiting lists in the country. We really encourage people to have family discussions about organ donation.” To become a donor, register with the Alabama Organ Center online; send the completed form to the center; or sign up when renewing an Alabama driver’s license.
Because most organ donations are from people who die after an accident or other sudden event, prior discussions about organ donation provide comfort to the donor’s family, Rayburn said. Organs must be donated immediately after the heart stops.
“All of this makes it even more important to be registered,” said Rayburn, who in 2016 donated a kidney to a longtime friend who had renal failure.
“The transplant hospital has very strict criteria to ensure someone will stay healthy after being a living donor,” she said. “The process is easy, and it’s so worthwhile to the person whose life you save.”
New health, new husband, new life
Today, Berry is living her happiest, healthiest life possible. She is thrilled to share her story with people awaiting transplants, and works with the Alabama Organ Center in that endeavor.
“It has been a miracle,” Berry said, beaming. “I’m cured of an incurable disease. I started my own business a few months ago. On the anniversary of my transplant date – May 18 – I got married.” Her husband, Jason – J.B., for short – has been a friend since Berry was 10.
Glowing with joy, Berry said the Janiverse is exactly as it should be.
“Next month, it will be 6 years since this miraculous event occurred,” Berry said. “All the administrators, the clinicians and the doctors at the Alabama Organ Center are so special, it’s their work that leaves a legacy for donors and their families. I am honored to be an advocate.
“I know that God’s hand has been on me through all of this,” she said. “When the Alabama Organ Center saved my life, they not only impacted me, they impacted my community, my church, my friends and my family. I am beyond thankful for what they have done for me. It takes courage for the Alabama Organ Center to do what they do. They allowed me to live again.”