Christin and Paul Gigstad with their son, Carson, showing a 3-D print of his original heart, given as a gift by Mayo Clinic on the first anniversary of Carson’s heart transplant.
In July 2017, at the age of 13, Carson Gigstad of Savage, MN, went from what his parents assumed was a perfectly healthy life to a heart transplant … in 11 days.
It was toward the end of a family vacation in Brainerd, MN, when Carson complained of a headache and stomachache, and that it hurt to breathe. He said, “I want to go to the doctor—right now.” Not a usual request from a teen-age boy.
Christin and her husband, Paul, thought they were in store for a quick trip to urgent care and maybe a prescription. But after examining Carson, the doctor asked, “Have you been told Carson has an enlarged heart?” The Gigstads were dumbfounded. With no time to process, their son was flown by helicopter to Children’s Minnesota. And two days later, to Mayo Clinic in Rochester, MN.
“Had the doctor not acted so quickly, I am 100 percent convinced Carson would not be here today,” Christin said.
Diagnosed with dilated cardiomyopathy, Carson was in full heart failure—and may have been for quite some time. The medical team in the cardiac intensive care unit suspected the condition to be genetic, so Christin, Paul and sister Delaney, then 16, went through testing.
Then the second blow: Paul was in heart failure, too, although less catastrophic.
Christin said that even in the moment, she felt a sense of clarity. She said, “It was like, ‘OK, we’ll deal with it. There is nothing I can do at this point to change it. We’re in the right place, with the right docs. They could have both died. Instead, they are both here today.'”
While Paul could be treated with medication, Carson was about to become the youngest patient at Mayo Clinic to have a temporary pump put into his heart. And it was while he was coming out of anesthesia after the procedure that the Gigstads learned a donor heart had become available for Carson.
By the next day, a new heart was beating in his chest.
Let Our Hearts Beat Again
Two years since the summer the Gigstads can never forget, Carson is a happy and proud member of Boy Scout Troop 226, which completed 12 days of hiking in New Mexico. His health is stable, and he takes in stride the ongoing medication-adjustment and monitoring that have become part of his routine.
And while Paul may someday need a heart transplant, his health is also stable today. (He went on the Boy Scout adventure, too.)
In thinking about her family, Christin said she can relate to the Danny Gokey song, “Tell Your Heart to Beat Again.” She wrote in Carson’s CaringBridge Journal, “Maybe this song is telling all of our family members to let our hearts beat again. Maybe we all need to find our way forward, and to figure out how to live life to the fullest, each and every day.”
Sleeping With One Eye Open
Figuring out how to live life to the fullest has been a different journey for each member of the Gigstad family.
Christin said Carson and Delaney just want to move on after the transplant, which is OK. “But my husband and I will never be able to fully do that,” she said. And Paul’s own heart condition has him reflecting on mortality maybe more than other fathers of teen-agers.
Someone once said to Christin: “You must sleep with one eye open every night.”
It made the hair on the back of her neck stand up. It is so true. She said, “Some nights I’m better than others. We’ll have really good days or weeks, and I sleep better. But then something happens—complications or a virus— and I think, ‘Oh, no, here we go.'”
But things have come a long way since 2017. “When we first came home from Mayo, I walked around like a zombie,” Christin said. “Now we’re in a new normal. It’s a place that feels similar, but it’s different.”
Writing as Therapy
To get to this place of new-normal, Christin said she has had to grieve for her family’s old way of life. CaringBridge has been helpful in that process.
“It has been my own therapy to write,” Christin said. “It has allowed me to say, ‘I am grieving, and this is hard.’ My hope through writing is for my own healing, and also for others to heal. I want people to realize it is OK to say, “This really sucks.”
Christin said she feels better after she writes. Her therapist sees that, too. “My therapist can tell whether I’ve written or not,” she said. “I’m in a different state of mind than if I haven’t written.”
She said that she has come to realize you can’t rush the process of grief: “You can’t say, ‘OK, your grief is done now.’ Everyone has to do that in their own way.”
Life After Transplant
Carson’s heart transplant has drawn the Gigstad family closer. “Family is first,” Christin said. “It has become clear to me that you don’t always get a re-do in life.”
With that in mind, Christin takes care of her family AND herself. She sees a therapist, and has amassed a list of things that help her cope: a walk, giving back, massage, dinner with a friend.
“We have a family calendar, and I put these things right on there,” she said. “I feel better when I do some things for myself. Even if I feel guilty, I’ve learned that sticking to it is the right thing to do.”
The Gigstads also have a renewed commitment to doing family activities together, like hiking, game nights and other things chosen on a rotating basis, to avoid squabbles.
‘I Look at Life Differently’
“Life is moving along,” Christin said. “But we appreciate how things can change in an instant. Sometimes I go to the grocery store, look around, and think to myself, ‘I wonder what these other people are going through?'”
She is currently writing a book to help others going through health crises, and she continues to process where life has taken her family.
“I look at life so differently now,” Christin said. “I value the minutes and days and conversations and sibling fights differently. My kids were recently arguing about something, and I was smiling. That annoyed my daughter! But I told her, ‘I love that you’re fighting, because you’re both here to fight. That’s a beautiful thing.'”