Through tears, Christin Gigstad thanked the crowd that gathered under the shelter at River Bend Park on July 12 — severe thunderstorms in the area had not kept anyone away.
“This last year has been the worst storm of our lives, so it can’t be any worse than what we’ve had to go through,” Christin said.
One year ago, Christin and her husband, Paul, were vacationing in Brainerd with their 13-year-old son Carson and 16-year-old daughter Delaney, when Carson fell ill.
He was experiencing headaches, stomachaches and loss of energy and they decided to take him to the emergency room to see a doctor. Carson’s bloodwork revealed that something was seriously wrong and he was airlifted to Children’s Hospitals and Clinics of Minnesota in Minneapolis.
At Children’s, it was determined that Carson was in complete heart failure. He was transferred to Mayo Clinic in Rochester, where he became the youngest patient to have a pump put in his heart. Before even waking up from the procedure, a donor match had been found for Carson to receive a heart transplant.
By early morning the next day, Carson had a new heart.
A year of change
“It happened so quickly,” Christin said. Carson’s condition — dilated cardiomyopathy — came as a complete shock. In the moments before his transplant, his heart had enlarged to four times the normal size. After the transplant, Christin remembers being told they wouldn’t be able to leave Rochester for three months. A 90-day stay is standard for transplant recipients.
“I remember thinking, how are we going to do this,” she said.
In the days following Carson’s transplant, Christin remembers meeting Scott and Pam Garwood while walking down the hall of Saint Marys Hospital. She doesn’t remember exactly how the conversation started, but soon discovered that the Garwoods lived nearby in Prior Lake and that their then 15-year-old son, Roman, was awaiting a heart transplant.
While the Gigstad’s circumstances were unforeseeable, the Garwoods had been on the journey since Roman was diagnosed with a heart defect when he was just eight hours old. Due to a condition known as protein-loss enteropathy, Roman was just 72 pounds when he arrived at Mayo Clinic for his transplant.
On Aug. 11, 2017, a week after Roman’s 16th birthday and after six months on the transplant list, he received a new heart.
Roman’s parents said he is known by the medical team for his openness, even when his transplant started being discussed in 2016.
“He was breaking it down to the simple,” Pam said. “New heart, I’ll feel better, okay yeah, let’s go for it.”
“No, it was new heart, go back to school, get a car,” Roman joked.
Scott said that Roman — and other young people facing serious illness — learn responsibility when faced with an experience such as a transplant. He said that Roman knows how to be a patient and advocate for himself, but things such as learning to drive are a little too fast for mom and dad.
The two families resided together in Ronald McDonald House while Roman and Carson were in inpatient recovery following their transplant.
“It’s been really nice to be able to talk to Pam and just have that connection,” Christin said.
Pam said that while their sons face completely different medical issues, the families are able to support each other in understanding the daily stress that the conditions bring. Carson and Roman see many of the same doctors and nurses and both families navigate the choices that need to be made surrounding constant innovations to treatment.
Scott said developing trust with the medical team caring for their son is an invaluable shoulder to lean on.
“If you didn’t have that, you’d be lost,” he said.
Anti-rejection medication that suppresses the immune system is another road that the families travel together. They share concerns about germs and diet restrictions while also trying to find a new normal for their families post-transplant.
At the gathering, Christin asked friends and family to write something they’ve learned from their journey through the past year on a notecard. Christin is working on a book after finding a passion for writing through posting updates to Carson’s CaringBridge website.
The first part of Christin’s book will recount the first month of their journey and dealing with the shock. The second part, she said, is about settling into their new lifestyle following the transplant surgery. The third part is about the Gigstad family dealing with the after effects of the trauma and their efforts to regroup as a family.
Christin said she didn’t expect how differently each family member would process the grief and trauma. She said they are still working through understanding the complexities of how they can support each other collectively.
“We had to learn to be a family again,” Paul said.
“But a different family,” Christin replied. “We were not the same people. We were outside, but not inside.”
Throughout all the hardships, both families agree that the experience has led them to see the goodness in the world and meet the people that go above and beyond to help.
Scott said that extended family spent countless hours with Roman in recovery — many traveling from Iowa to be with him. Now, as Roman’s gained new strength, they feel thankful for the the ways their family grew closer during those months in the hospital.
“Never in my life did I expect this would happen but never in my life did I expect the kindness that would come from other people,” Christin said through tears at the celebration.
Much of that kindness has been unexpected — such as a $100 gas gift card left anonymously for Delaney or coming home to a mowed lawn.
“There’s so much goodness in the world,” Paul said. “I had no idea.”
For both families, the hospitals and relationships they’ve formed through the transplant journey are an integrated part of life.
Scott remembers taking pictures of their room at the Ronald McDonald House before leaving to head home.
“It becomes a part of you,” he said.
The next chapter
Both Carson and Roman are expected to need another heart transplant in the next 10 to 15 years. This is the standard range for transplant recipients their age, but something that their families say comes as a shock to most people, themselves included.
“You think it’s a cure, but it’s really just tiding you over to the next one,” Paul said. “There’s still a lot to go through.”
Carson finished school at Eagle Ridge Middle School in Savage and will be a freshman at Burnsville High School this fall. He said he is looking forward to taking art and woodworking classes. Currently, he makes fountain pens — something he learned during visits from his church pastor during recovery.
Carson and Paul will be heading to the Boundary Waters at the end of the month with Boy Scouts Troop 226.
Roman will be heading to Camp Odayin — a summer camp for kids with heart disease — for the fifth time. Christin said Carson’s one year follow-up appointments conflicted with camp for Carson this summer, but he plans to go in the future.
Roman had to leave Shakopee schools in 2016 and is enrolled in online school now. He hopes to attend Shakopee High School for his senior year.
While driving home from Carson’s celebration, the Garwoods spotted a double rainbow in the sky.
Pam posted a reminder on CaringBridge to always look for rainbows after a storm.
For the Gigstads and the Garwoods that evening, there were two.