She didn’t want to look.
Lori Hinkle knew that a double lung transplant was the only way her son, Nick, was going to live. He had been diagnosed with cystic fibrosis, which would eventually rob him of the ability to breathe. They had been planning on a transplant for years.
But after the surgery had been complete, she was shocked to see him.
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“It was really hard. I lost it once I went in after the first time we got to see him, because he was hooked up to all of these machines and tubes. There was all this stuff in him,” Lori Hinkle said.
Recovery from the transplant was arduous for Nick; his body had to essentially learn to breathe all over again. But today, he’s healthy and complication-free.
Now the Hinkle family is preparing to go through the situation all over again. Three years after Nick Hinkle received a double lung transplant due to cystic fibrosis, his younger brother Dalton faces the same situation. The 15-year-old is preparing to be placed on the lung transplant list as the disease has progressively impacted his breathing.
Sitting together in their parents’ Southport home, Nick and Dalton talk about their situation matter-of-factly. Both describe themselves as laid-back, never getting too worked up about things, even with the situation ahead.
They talked about their hobbies. Nick Hinkle, who is in his second year at the University of Indianapolis, loves to read, listen to music and play video games. Dalton Hinkle, a sophomore at Southport High School, is also big into music, with a passion for discovering new songs, bands and styles to listen to.
“I try to listen to anything new. There’s something new I try out,” he said.
But the impending need for a transplant is ever-present for the family. Medications are laid out on the counter. Medical equipment to monitor Dalton’s health are pushed to the side.
He had just been released from Riley Hospital for Children at Indiana University Health in mid-November after suffering a severe lung infection. Those occurrences would only get more frequent as his lungs grew weaker.
The family had lived through the same thing with Nick. He was diagnosed with cystic fibrosis when he was 2 1/2 years old. The family was shocked when they learned of the diagnosis; even though cystic fibrosis is a genetic condition, no one in their family had ever been diagnosed with it.
The disease causes the body to produce a thick mucus in his lungs and other organs, which trapped bacteria and caused persistent infections over time.
Nick Hinkle was constantly being hospitalized for infections. His breathing always felt strained, and actions as simple as moving around the house was difficult.
Doctors told the Hinkle family that eventually, the disease would have caused total respiratory failure.
“Over time, their lung function decreased, and got to the point where they needed to get new lungs in order to breathe,” Lori Hinkle said.
The prospect of a lung transplant was intimidating. But because doctors were constantly keeping track of Nick’s health and knew the progression cystic fibrosis would take, they could prepare the Hinkles well before the situation became dire.
The family started having discussions with transplant physicians and social workers for years before Nick was actually placed on the transplant list.
“They put me through a series of tests to see how well I was functioning, and then that got me on the list,” he said.
Once he was placed on the list in early 2015, the family prepared for a long wait to find a match. Surprisingly, transplant officials contacted the Hinkles less than four weeks after going on the list, informing them they had two viable lungs.
“They told us to expect one to two years. It just happened to be the right scenario,” Lori Hinkle said.
The transplant surgery was scheduled for March 2015 at Riley Hospital for Children. The situation was overwhelming, with doctors providing a deluge of information about what the operation would be like, how he’d feel afterwards and how this would impact him for the rest of his life.
But while he paid attention to what his doctors told him, Nick Hinkle tried to go into it with a clear mind.
“I wanted to go in with as limited a view point as I could. I wanted to experience it and get my own view on it,” he said.
The surgery was a success, even if Nick Hinkle took months to recover. Infections developed that forced the family to return to the hospital. Eventually, though, his new lungs were strong enough to function properly. Since that time, his health has drastically improved.
He had forgotten what it felt like to take a deep breath.
For Dalton Hinkle, seeing his brother go through the transplant process was like seeing into the future. Knowing that he had cystic fibrosis, he would in time need new lungs as well.
While that prospect was frightening, it also helped him prepare for the inevitable.
“Seeing him go through it, it’s been a little more casual,” he said. “I saw him go through it, and to me, he didn’t seem that worried. So I’m not that worried about it either.”
Armed with that knowledge, the family is making arrangements.
Dalton Hinkle is not on the transplant list yet; he needs to go through a battery of tests gauging his health and how severe his need is before that happens. He also will need a series of immunizations to boost his immune system.
He is going through pulmonary rehab, where he works his lungs to get as strong as possible. He rides a stationary bicycle and runs on a treadmill for one hour multiple times each week.
The family expects to go on the transplant list by the end of the year or early 2019, Lori Hinkle said.
As much as the physical preparations are ongoing, the family is also working to be ready financially. Organ transplants can cost more than $800,000.
During Nick Hinkle’s transplant, the family had qualified for supplemental security income, a Social Security program for disabled adults and children with limited income.
But as Ron and Lori Hinkle’s income has improved, they ability to access that program is in doubt, Lori Hinkle said. The family has partnered with the Children’s Organ Transplant Association to raise about $50,000 for Dalton’s transplant.
The Children’s Organ Transplant Association, or COTA, is a nonprofit organization based in Bloomington that works to ensure children and young adults have the funding they need to get life-saving organ transplants.
Funds raised will help not only pay for Dalton’s care, but for costs related to the transplant, such as the family’s transportation to and from Riley Hospital for Children, as well as for income Lori Hinkle loses while caring for him.
“It’s 100 percent for the transplant and transplant-related expenses. You don’t think about how much money you’re going to spend being at the hospital — meals there, driving there. It’s more than just the care itself,” said Amanda Hill, coordinator of the family’s fundraising campaign through COTA.
They have started a page on Facebook, COTA for Team Hinkle, to raise awareness of fundraising efforts. A webpage, cota.org/campaigns/COTAforTeamHinkle, was established so people could make contributions.
They have paper icons available to purchase at local businesses. Collection boxes have also been set up throughout the southside.
A dine-to-donate night was held at CiCi’s Pizza on Giving Tuesday, and another this week at Moe’s in Greenwood. Another fundraiser is scheduled for Thursday.
“We’ve been meeting regularly, getting ideas and figuring out the best way to do this,” Hill said.
The fundraising effort is in its infancy. But the Hinkle family are encouraged about the way that people have already contributed to their cause.
“It’s hard to be on the receiving end of these things sometimes. But it feels good that people are willing to step up and help,” Lori Hinkle said.
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The Hinkle family of Southport, working with the Children’s Organ Transplant Association, are raising money to help offset medical and associated costs stemming from the double lung transplant needed by Dalton Hinkle, 15.
To contribute to the cause, go to cota.org/campaigns/COTAforTeamHinkle. Information can also be found at facebook.com/COTAforTeamHinkle.
Donation boxes have been set up around the southside at the following locations:
- Marathon Gas, 1345 W. Southport Road No. 1, Indianapolis
- Robby’s Pub, 1345 W. Southport Road, Indianapolis
- Phillips 66, 8202 Morgantown Road, Indianapolis
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COTA for Team Hinkle fundraiser
When: 4 to 8 p.m. Thursday
Where: Panera Bread, 5335 E. Southport Road, Indianapolis
What: Show the flyer, found at facebook.com/COTAforTeamHinkle, to have a portion of the proceeds from your meal donated to the Hinkle family as they prepare for a double lung transplant for 15-year-old Dalton Hinkle.
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