Dr. Alex Kula is a resident at Seattle Children’s. As a young adult, Kula was the recipient of a life-saving living liver transplant.
As a resident at Seattle Children’s, Dr. Alex Kula brings a unique perspective to patient care: his own history as a youth with a serious illness.
Here Alex shares how his uncle gave the ultimate gift, and why the experience drives him to help sick children live healthy and fulfilling lives.
I was 15 years old and a normal teenager: living in Phoenix, hanging out with my friends at school and running with the cross-country team.
Then a mysterious autoimmune storm interrupted the normalcy of my life. It left me with type 1 diabetes, ulcerative colitis and an inflamed liver. Blood tests later revealed primary sclerosing cholangitis (PSC), a disease of the bile ducts, as the cause of my liver inflammation.
Prior to this, I had never really been sick — which was fortunate, considering how much I hated to go to the doctor. However, I quickly came to appreciate the complexity and wonder of medicine. Read full post »
Wade Washington underwent a kidney transplant at Seattle Children’s in 2013 and is now a student at the University of Washington with career aspirations of working in healthcare.
Growing up, 19-year-old Wade Washington knew he’d one day need a kidney transplant. The question was never if, but when.
“I never really knew what normal was,” said Washington. “I was born with chronic kidney disease, and so it was what I was used to.”
As a child, Washington’s condition was manageable, but as he grew up his condition worsened. As Washington hit puberty, his kidneys began to fail.
“Wade was born with renal dysplasia, a congenital malformation of his kidneys,” said Dr. Andre Dick, surgical director of the Kidney Transplant Program at Seattle Children’s. “Once he entered puberty, his kidneys couldn’t meet his body’s metabolic demand. We knew he’d need a transplant.” Read full post »
Elliott Kaczmarek, 3, poses with his mother, Nicole, and father, Jonathan.
This April, in recognition of Donate Life Month, On the Pulse shares the story of how a life-altering diagnosis put one family on a philanthropic journey to help others in need.
When Elliott Kaczmarek was 10 months old he came down with what his parents thought was a stomach bug.
“He wasn’t feeling well, but we didn’t think much of it at first,” said Jonathan Kaczmarek, Elliott’s father.
Just in case, the Kaczmarek’s called Elliott’s pediatrician. Initially, there was no cause for alarm. He had a mild fever and threw up a few times, and so their biggest worry at the time was dehydration.
“After a few days he started getting better,” said Nicole Kaczmarek. “Then his condition changed. He turned green and pale and was lethargic. It was then we knew he needed to go the urgent care.” Read full post »
A year ago, On the Pulse shared the harrowing story of 8-month-old Lincoln Seay. Lincoln was born with heterotaxy syndrome, a severe birth defect that caused his heart to develop on the opposite side of his body. In order to survive, he needed a heart transplant.
In November of last year, Lincoln was placed on the transplant list, but as each day passed, his condition continued to worsen and doctors questioned if he would make it to transplant.
“We had a list of patients and he was the one we were most concerned about,” said Dr. Michael McMullan, surgical director of heart transplantation at Seattle Children’s. Read full post »
Kristin Jarvis Adams (back right) found different forms of support when her son Andrew (bottom right) was diagnosed with autism, and then years later when he battled a rare immune disorder. Also pictured are her husband, Jon, and daughter, Hannah.
The proverb that suggests it takes a village to raise a child can be easily adapted for parents facing the various challenges that come with having a child with special needs and circumstances. Parents sometimes need the support of a village. Author Kristin Jarvis Adams shared her experiences with On the Pulse in finding her village when her son, Andrew, was diagnosed with autism and years later, when he was treated and overcame a rare immune disorder at Seattle Children’s and Seattle Cancer Care Alliance. Adams, who is a member of the Autism Center Guild at Seattle Children’s, tells her family’s story in her book The Chicken Who Saved Us: The Remarkable Story of Andrew and Frightful.
For 10 years my husband and I had been making trips to and from Seattle Children’s with our autistic son, Andrew, who suffered from an unheard of progressive inflammatory disease. Andrew had been in the hospital for months, his body riddled with gaping ulcers, his organs compromised by chronic inflammation. Now we were in the middle of chemotherapy and radiation treatments that were preparing him for an experimental bone marrow transplant. It was our last hope.
Read full post »
Olivia was born with a rare disease of the liver.
Patricia Alva knew, even before her baby girl was born, that something was wrong. When she was pregnant, doctors detected a cyst on the baby’s stomach during an ultrasound.
“It was heartbreaking,” said Alva.
After she was born, doctors diagnosed baby Olivia with biliary atresia, a rare disease of the liver. It occurs when a baby’s bile ducts do not form normally. It occurs in about 1 in every 15,000 babies. Read full post »
Belinda Hudson would do anything for her 18-year-old son, Nigel Dalton. So when he needed a kidney, she didn’t hesitate to offer one of her own.
Unfortunately, she wasn’t a match.
“I always thought I’d be able to give him mine,” said Hudson. “I’m his mom. I couldn’t believe I wasn’t a match. I felt so helpless.”
She was, however, a perfect match for someone else, a complete stranger. So again, without hesitation, she offered her kidney, and in return her son found a match as well.
And so, through the National Kidney Registry, a chain of six people and three kidneys was formed, all linked together by the gift of life. Read full post »
Kaden Hollis, now 11, received a lifesaving liver transplant when he was nearly 2 years old.
In honor of Donate Life Month, On the Pulse shares an inspiring story of a mother and her son that symbolizes the true act of ‘paying it forward’. Kaden Hollis was only 1 years old when he underwent a lifesaving liver transplant. Throughout Kaden’s journey, his mother Cindie knew that although the gift of life her son received could never be paid back, it could be paid forward — which is what she did when a friend was in desperate need.
Kaden Hollis was just 3 months old when his mother, Cindie Hollis, began noticing signs that indicated her baby was not well.
The whites of his eyes were turning yellow, which quickly spread throughout his entire body. He had a constant itch that resulted in awful cuts all over his delicate skin from the scratching. It was evident that Kaden had a severe case of jaundice. After numerous doctor visits and careful monitoring of his condition over the next several months, Kaden’s health was not improving. To find the answer to what was causing her son’s worrisome condition Hollis went to Seattle Children’s Hospital when he was 13 months old.
Read full post »
Trevor was born with rare disease called maple syrup urine disease. Seattle Childrens transplant program is one of six centers in the country to offer transplantation for children with MSUD.
Only a week after giving birth to twins, a girl and a boy, in July of 2008, Annette Cole’s world was turned upside down. Something was wrong with her baby boy, Trevor Clemons. In his first couple weeks of life he was lethargic, irritable and couldn’t keep any food down. She was overwhelmed with fear as doctors delivered the difficult news.
The diagnosis felt as unreal as the name of the disease sounded: maple syrup urine disease (MSUD).
“We couldn’t believe it,” said Cole. “When we first found out about the disease, we had never heard of it before. We didn’t know what to expect. We didn’t know anything.” Read full post »
At only 8 months old, Lincoln Seay, has spent the majority of his short life inside the walls of hospitals. This week, however, marks the start of a new chapter: he is finally going home, or at least he’s one step closer to his home back in Alaska.
Only 21 days after receiving a life-saving heart transplant at Seattle Children’s Hospital, Lincoln was discharged from the hospital with a new heart and a new lease on life.
“We’re so excited,” said Rob Seay, Lincoln’s father. “As a family it’s been a big celebration since we were discharged. We’re finally all under one roof again. It’s a tremendous blessing.” Read full post »