When Andrew Heider was born in 1985, doctors quickly diagnosed him with cystic fibrosis, a life-threatening genetic disease.
It was a time when cystic fibrosis patients were considered lucky to make it past adolescence. The disease produces thick, sticky mucus that clogs the lungs and causes infections or causes problems in other organs.
Nearly 29 years later, Andrew is still here. He has ridden BMX bikes and played baseball, traveled to London and proposed to his wife along the Thames under a New Year’s Eve sky. He graduated from college and has been a working man, most recently in real estate.
Cystic fibrosis is just one thing he does.
Still, he can imagine the fear parents must feel when they hold their new baby and get the diagnosis. He doesn’t want them to think the disease is all their child will ever be.
“I want to show that you can be an adult and you can still live a life,” he said.
This summer, Andrew underwent a double lung transplant. It’s not a cure, but it is a way to keep going, to try to be a part of a wave of cystic fibrosis patients living into their 40s and beyond as treatments improve.
“I want to see the change and be part of it. I’ve been part of it. A kid born now with cystic fibrosis – their chances of living their life normally are so much better now than in 1985,” he said.
Andrew, 28, and his wife, Amber, 29, are quick to make jokes when they can about what they casually call “CF.” She writes a blog, “To CF With Love,” that details the ins and outs of life with the disease – her husband’s need to eat all the time, the bathroom humor and the doctor appointments and hospital visits they happily frame as adventures.
Andrew cracks up when he reads it, even when he knows what’s going to happen next.
But sometimes, inevitably, the frightening, serious undercurrents become the main storyline.
A delicate conversation
Earlier this year, as Andrew’s lung function dipped lower and lower, doctors told them it was time for the delicate conversation they had long hoped to avoid: the need for a lung transplant.
The conversation was a threatening one, not just because of the risks any transplant carries but because it meant things were getting worse for him.
“If you have to have a transplant, that means you’re dying. And I don’t want to think about that,” Amber said.
The conversation wasn’t urgent at first, but when Andrew’s health continued to deteriorate, he quickly ended up at the top of North Carolina’s lung transplant list.
The sudden change left the Heiders confused, filled with the sense of doom they aspire to rise above. They both recall a night they spent apart – him in the hospital, her in their North Raleigh home – imagining the worst.
But the next morning, before they could begin talking, they both turned it around for each other. They made the promises most people don’t expect to make to their 20-something partner.
“We have to go into this how we’ve always done it, together , ” he remembers saying.
“Maybe this is a way for us to change our mode of thinking and realize this is a way for you to live longer and happier and healthier , ” she remembers realizing.
Then, they waited. Andrew did arm curls with Gatorade bottles while he sat in a hospital bed. Amber organized everything, the way she always does. They played cards and made friends with the nurses.
Finally, Andrew had his transplant, a surgery that set off a string of complications that kept him in the hospital for weeks. When he started bleeding internally after surgery, his blood pressure dropped and he suffered a small stroke that left him with a case of expressive aphasia.
Next, a bowel obstruction kept them anxiously awaiting word from his doctors about whether he would have to undergo yet another surgery.
At last, though, the all-clear came. They’re home now, getting used to a regimen of new measurements and medications. Andrew’s mother fills the gaps in caregiving when Amber heads to work.
Even just a few weeks removed from it all, they can laugh at the way Andrew savored his first bites of Jell-o when he finally could eat again.
Or the text message he sent his wife on the day it became clear no bowel surgery would be necessary: “poop.”
Their tenderness toward one another, their caring natures and their joy are what their friends and siblings treasure. A group of them are fundraising in honor of Andrew through the Children’s Organ Transplant Association. The association also helps adults who need transplants because of certain genetic diseases.
Their next fundraiser is Saturday at Kings in downtown Raleigh. Appropriately, it’s a comedy night.
Sara Sigmon, who leads the fundraising group, said she’s lucky to count the couple as friends.
“I continue to be impressed and overwhelmed with how they have handled this with such grace and maturity,” she said.
The Heiders were reluctant to raise money. Andrew is eligible for disability and Medicare, and they’re hoping Medicaid benefits also will come through to help them meet all of their expenses.
They like that if it turns out they don’t need the money to fill the gap in their insurance coverage, they’ll be able to tell COTA to help another patient instead.
As Andrew heals, there’s a lot to consider. The next year is critical as they wait to see that his body doesn’t reject his new lungs, and doctors also will watch to ensure cystic fibrosis doesn’t find its way into them. Andrew’s still sick with the disease in his sinuses and pancreas.
Andrew said that now that he’s post-transplant, he wants to continue to help others with cystic fibrosis – to talk to children and teenagers about the importance of sticking with their treatments, push for research and development that could bring even better treatments and, as always, be an example of what’s possible.
A few weeks ago, after describing the tribulations of the summer, he said he doesn’t need to climb a mountain or run a marathon.
He just wants to travel with Amber, hang out with their friends and family and watch how the lives of his three younger brothers unfold.
“I’m not thinking bucket list kinds of things. I’m just thinking –”
When he trailed off, his wife quickly offered the word he was looking for: “Living.”
Andrew beamed. “Living.”