NEW ORLEANS (AP) - It has been more than a year since Collin Berg, a 14-year-old De LaSalle High School freshman, received a new kidney from his mother, and he said he has more energy than ever before.
Born with a rare genetic disorder called Autosomal Recessive Polycystic Kidney disease (ARPKD), Berg said that he couldn’t go outside before because the sun made him tired. His parents knew that eventually, he would need a transplant.
“Collin is now a different kid, full of life,” said Karen Berg, mother and a registered nurse who works in outpatient surgery for Ochsner Hospital. “Before the transplant, he was so sick and so tired all the time. He would throw up and had headaches. It was overwhelming.”
On Jan. 31, 2017, Berg and his mother, Karen, underwent surgery. Doctors removed one of Karen’s kidneys and transplanted it into her son.
Karen recalled that Collin was born premature at 32 weeks by an emergency C-section because she had no amniotic fluid.
“Collin spent the first 3.5 weeks of his life in the NICU, but wasn’t diagnosed until he was 6 months old with autosomal recessive polycystic kidney disease. ARPKD is a rare disease that affects 1 in 20,000 children worldwide. My husband and I are both carriers of the gene and little did we know, we had a 1:4 chance of having a child with PKD.”
Throughout his younger years, Berg was given dozens of medications and multiple surgeries to help relieve and maintain functioning of his enlarged kidneys and other vital organs.
“Collin’s native kidneys are the size of footballs,” said Karen, recognized as the first living donor of a kidney at Tulane Lakeside Hospital. “His liver and spleen are also enlarged. Over the next 12 years or so, we managed his high blood pressure with oral medications.
“Collin has always been a champ about taking his meds. I can remember giving him his liquid meds when he was just an infant, even giving them to him while he was asleep. He would just open his mouth and take his liquid medication and continue on sleeping. Still to this day, when it’s time for his meds, he is on it without hesitation.”
Alongside his mother, Collin was the first recipient of a kidney from a living donor at Tulane Lakeside Hospital in Metairie. Upon completion of the surgery, Karen remembers the agony of waiting to hear if the kidney transplant was successful.
“The transplant seemed to go well, however, once they got him settled in the PICU, they could not detect any blood flow to the kidney so he was rushed back to the OR to open up the graft to allow blood flow to the newly transplanted kidney,” Karen said.
“We were told the following day that the kidney took a big hit and that the kidney would more than likely need to be removed because of the lack of blood supply. The kidney appeared black. We prayed. Collin underwent dialysis three times in the hospital while we waited for the kidney to wake up.”
During this stressful time, Collin underwent several surgeries in an attempt to close his muscles in his abdomen. However, Karen indicated that the abdominal muscles were left open in order for the kidney to heal in place.
“Over the course of the next week, Collin had at least 3-4 more surgeries to attempt to close his muscles in his abdomen, however this could not be done without cutting off the blood supply to the newly transplanted kidney, so his abdominal muscles were left open. He had his abdominal muscles closed (about a 10 cm hernia) in March 2018. He has been physically limited because of this and I think that is the hardest part for Collin.”
Although he may have a few health restrictions, Collin has been active in filming the practices and games of the varsity football team at De LaSalle High School.
“At De La Salle, I can’t play sports, but I still want to be a part of a team,” said Berg. “I film for the varsity football team, take the bus and go to the church with the team. I just want to do something and be a part of sports.”
Collin also participates every year in the New Orleans Kidney Walk, since he was about 5 years old.
“I have been doing the Walk almost every year that I can remember,” said Berg.”I have met a couple of people like me.”
This year, the National Kidney Foundation of Louisiana’s 17th annual New Orleans Kidney Walk will be taking place on Nov. 11 at Audubon Park’s Newman Bandstand Shelter No. 10. Karen serves as a lead for the National Kidney Committee and continues to support the New Orleans Kidney Walk.
Today, Karen is happy to report that his blood work is normal for the first time since birth.
“I feel blessed,” said Karen, a lifelong resident of Jefferson parish. “I had minimal downtime after the surgery. I still feel like I have two kidneys. I have not changed my lifestyle at all.
“Collin is the true hero in all of this. He has been through so much and continues to have such a positive attitude despite all of the medicine, all of the lab sticks, all of the testing, all of the discomfort. I feel like I did what any parent would do. But, it was our faith that has carried us through this.”
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Information from: The Times-Picayune, http://www.nola.com
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