To Donate Click Here Former Anaconda resident Kathy, nee Malone, Battany’s youngest son, 15-year-old Erik says he will celebrate two birthdays from now on – the day he was born on and April 13 – the day he got a heart transplant.
“He just takes everything in stride,” Kathy said Thursday during a telephone interview from the Children’s Hospital in Aurora, Colo. “He is the strongest person I know.”
Erik was an active 12-year-old who loved to play basketball and go swimming when he came down with what his parents thought was a cold at the end of fifth grade. “He was really sick and had a fever, so I took him to the doctor,” said Kathy, who lives in Erie, Colo. with her husband, Tom. “He also had a lump and pain in his groin area.” The doctor treated is as an infection and gave him an antibiotic, but when he didn’t get any better, they returned to the doctor’s office.
“He was really tired all the time, but we thought it was an infection,” Kathy said. “They did an ultrasound on the lymph node in his groin and said it had to come out immediately.” A biopsy indicated Erik had Castleman’s disease, which is a rare disorder that involves an overgrowth (proliferation) of cells in the body's disease-fighting network (lymphatic system). Also known as giant lymph node hyperplasia and angiofollicular lymph node hyperplasia, Castleman’s disease can occur in a localized (unicentric) or widespread (multicentric) form, according to the Mayo Clinic’s website at wwww.mayoclinic.org. Erik has the widespread form of the disease. “It’s an 80-year-old man’s disease,” Kathy said. “They thought something must be wrong with the biopsy, so they sent it to the leading pathologist in New Mexico to be checked. It came back again as Castleman’s disease. There are very few children’s cases. But Erik is my 1 percent kid – no matter how unlikely something is, it will happen to Erik.”
Castleman’s is treated like lymphoma because it can become cancerous and deadly. Erik underwent several surgeries to remove his lymph nodes and underwent eight months of chemotherapy before completing treatment in November 2013.
Although the doctors had indicated the chemo could damage his heart, they said it was highly unlikely and if it did, it would show up 30 or 40 years down the road, Kathy said. “The treatment took a lot out of Erik – he was down to 70 pounds and was tired and short of breath all the time,” she said. “I came home from work on a Friday and he told me he didn’t finish his online school work because he couldn’t breathe enough to concentrate.”
Kathy immediately took him to the hospital where they determined he was in heart failure. “I was shocked, but I knew something was bad when six doctors came in the room to talk to us,” Kathy said. “Like I said, he’s my 1 percent kid.”
Erik stayed in the hospital for more than a month where he underwent open-heart surgery to have a left ventricular assist device (L-VAD) installed in his left ventricle.
“It’s a little turbine to help the blood flow inside the heart,” Kathy said. “He had a battery pack that he wore in a fanny pack. It was scary because I had to learn how to replace the controller within four minutes.”
Erik also could not go anywhere there was not a 24-hour, seven days a week power source and a backup generator.
“He had to be plugged into a wall at night,” she said. “But he was a star through it all – he rode the city bus 45 minutes to school in the morning and 45 minutes back home to do his online school in the afternoon.” The Boulder High School sophomore got an infection and the L-VAD had to be removed last October.
“We was septic with a blood infection,” Kathy said. “So he had to have open heart surgery to remove the VAD, then his kidneys started to fail. But with medication he semi-recovered through November and the holidays.”
However, in February they found out Erik’s heart failure had advanced to the point that he would have to undergo a transplant if he wanted to live.
“They told us they needed to list him immediately, but that it had to be Erik’s choice,” Kathy said. “The doctor explained it to Erik and he said ‘OK, I’ve always been open to a heart transplant.’ He didn’t even hesitate.”
One month and two days later on April 12, Kathy got the call that a heart was available. “I was at work on Sunday at 4 p.m.,” she said. “We had to be at the hospital within the hour.” Luckily, her immediate family was all in town to celebrate Easter a week late because Erik had been hospitalized over the holiday.
“I knew when I got up that morning and was getting food ready that we were not going to have dinner that night,” Kathy said. “I just knew.”
Erik was at the hospital by 5 p.m. and was taken into surgery at 2 a.m. the next day. Eight hours later, he was out of surgery with a new heart beating in his chest.
“The doctors said his chest was open and his heart was ready to come out before the new heart got there,” Kathy said. “It’s overwhelming because he was failing every day before he got the heart. We are so grateful to the donor and their family.”
While Erik is feeling better with his new heart, he immediately got double pneumonia. “They told us there could be some complications,” Kathy said. “And of course, being my 1 percent kid, he got pneumonia.”
After several days of intravenous antibiotics, Erik’s lung functions are looking better and he is hoping to be out of the hospital within the week.
“Erik is the strongest person I know in life – he just takes it and goes with it and keeps fighting,” she said. “If he can get off the oxygen and on to oral medicine, he will be able to go home.” Meanwhile, Erik is looking forward to being out of the hospital to celebrate his 16th birthday in May.
“He told me that from now on he’ll celebrate two birthdays, so I guess that’s what we’ll do with him,” said Kathy, who has two other children, 17-year-old Veronica and 22-year-old Billy. A Go-Fund-Me account has been set up to help Erik and his family with expenses not covered by insurance at To Donate Click Here.
Kathie R. Miller Leader Editor