An emotional phone call came a day too late for Hope Kienle.
Hope, a 14-year-old at North Hall Middle School, has been on a pre-transplant waiting list for months. She’s set for a multivisceral operation that will give her a new liver, stomach, colon, pancreas and small bowel.
On a Tuesday in January, a call came in to Hope’s mother Amy Kienle about a potential donor match.
But the day before, Hope had been diagnosed with pneumonia, meaning they would have to decline the match.
“That one call changes your life,” she said. “This is the year that my life is going to be on hold.”
At 64 days old, Hope was diagnosed with biliary atresia and portal hypertension in 2003. The liver creates bile, a liquid that breaks down fats and carries waste through the rest of the body for excretion.
Amy Kienle, who is CEO of the Georgia Mountains YMCA, said Hope seemed fine at birth before she was examined at a baby wellness checkup. Hope underwent a liver transplant the next year.
A year and a half ago, however, Hope said she started feeling abdominal pain that made it difficult to breathe or eat.
“It was like being stabbed in the gut,” she said.
A dozen doctors from around the area couldn’t see anything wrong with her, Amy Kienle said, most summing it up as some sort of “stomach bug.”
“We went to probably 10 different doctor’s appointments between here and even her transplant clinic down in Atlanta at Children’s Hospital,” Amy Kienle said.
After an ultrasound, the doctors determined she did not have blood flow to her lower region. Hope underwent another seven surgeries in an effort to reopen all of the clotting in her vein.
“It’s basically a bypass through her liver to try and continue to get that blood to flow,” Amy Kienle said.
About a year ago, internal bleeding caused Hope to start passing out.
“I almost passed out in chorus at school,” Hope said, turning around and grabbing her friend’s shoulder.
Doctors at MedStar Georgetown University Hospital in Washington, D.C. have recommended the “life-saving transplant,” according to the Children’s Organ Transplant Association, which Amy Kienle said is expected to cost $100,000 above insurance coverage.
“They will also remove her spleen, which she has named Bob,” Amy Kienle said.
“Bag of blood,” Hope said.
The spleen has company with her liver named “Figaro,” which was named by her pediatrician.
“I don’t name all of them,” Hope said. “Just the special ones.”
Only four centers in the country do this type of transplant, Amy Kienle said. She and the family expect to be in Washington, D.C., for four to six months.
“Because the small bowel is involved, the follow-up and immediate post-transplant care is critical,” Amy Kienle said.
For an additional six months, she can’t be around people because of a weakened immune system.
“It’s a very emotional situation for us,” Amy Kienle said. “On top of the very emotional part, there’s the logistical part, which includes the financial burden of this. It’s overwhelming.”
Hope’s father Rob Kienle is North Forsyth High School girls lacrosse team coach. The team held a “Night of Hope” during the game, a fundraiser gathering more than $2,500. The money went to the Children’s Organ Transplant Association, which creates an account accessible by the Kienle family for transplant-related expenses.
Giggling with her friends and fiddling with her smartphone, Hope said she’s someone who “always likes to make people happy.” But the situation for her is “scary” and said she has anxiety.
“The waiting is kind of anxious and emotional,” Amy Kienle said.
More than anything, Hope said she wants to play contact sports, which doctors advise against.
The transplant also means being away from school and friends for a year as she recuperates.
“I’m pretty sure they don’t quite understand what’s happening, but they’re probably sad that I’ll be gone,” Hope said.
Amy Kienle praised the North Hall Middle School staff for being supportive with the family preparing for medical stays.
“They said they’d work with her remotely,” she said. “They’d make sure all the work’s online so she has access to that when she’s feeling up to it.”
In school, Hope said she has enjoyed anatomy and biology, and is considering a career in medicine.
“I know way more than I ever wanted to know about the liver,” Amy Kienle said.
Those wishing to help can send checks or money orders made to the Children’s Organ Transplant Association, with the subject line “In Honor of Team Hope K.” The mailing address is 2501 West COTA Drive, Bloomington, IN 47403.
Credit card donations are also accepted at COTAforTeamHopeK.com.
Amy Kienle also encourages members of the community to consider becoming an organ donor.