MINNEAPOLIS — For more than a month now, Lori Koch has relied on the love and support of a team of family members and medical staff at M Health University of Minnesota Hospital to help her through a holiday season plagued by heart failure.
"She has been here since before Thanksgiving," said Koch's daughter, Caitlin Hennen. "But Christmas did come early."
On December 13 Koch finally received the life-changing gift she had been hoping and praying for.
"Right after she got that call, she called me at 12:04 a.m.," Hennen said. "She said we have a heart... I was immediately in tears."
Koch's older sister, Tracie Vandenburgh, cried tears of joy as well, just as she had done nine years prior.
"I remember when I got my call," said Vandenburgh, who received her own heart transplant on August 7th, 2014. "My first thought was of the other family because you never forget how you got your chance at life."
Before that moment, Vandenburgh had spent a lot of her life wondering how long her heart - and life - might last.
"Our father died at 46," she said. "His parents died young also. My dad's brothers all had heart issues and most of them died at a young age as well. So when I turned 40 I wanted a full cardiac workup and I had a hard time finding a doctor to take me seriously, because I didn't have any issues and I didn't appear sick."
The response of her doctors shifted several years later, during a cardiac stress test.
"The door to the room flew open," Vandenburgh said. "They hit the red stop button, they made me sit down and they said, 'Are you all right?' I said, 'Yes, I'm fine.' They said, 'No you're not.'"
Vandenburgh says doctors discovered that her heartbeat was so erratic that she needed an implantable defibrillator. Then, in 2014, she grew so sick that she was admitted to M Health Fairview University of Minnesota Hospital, where she remained until receiving her transplant three months later.
"I think it's incredibly important that Tracie advocated for herself, knowing her family history," said Dr. Forum Kamdar, a transplant cardiologist for M Health Fairview.
Dr. Kamdar is part of the M Health team that performed both Tracie and Lori's transplants.
"They were at the same hospital, same team, nine years apart," Hennen said.
And in the time between those surgeries, the team also investigated what led to their family history.
"A lot of patients when they get diagnosed with heart failure, are misclassified," said Meg Fraser, a transplant nurse practitioner for M Health Fairview. "We see a lot of patients who are told their heart condition is due to their pregnancy, or their high blood pressure, or something else, when it's really genetic."
After undergoing genetic counseling, the sisters learned that they had inherited a gene mutation called LMNA from their father.
"This mutation, specifically, causes a very significant type of heart failure," Dr. Kamdar said. "Early screening is very important to be able to catch changes in heart function or abnormal rhythms at an early stage."
Since then, the rest of the family has undergone testing and early screening as well.
"It is hard because it is genetic and my children have been tested, and I do have a daughter who has the marker," Vandenburgh said. "She will most likely, somewhere in her lifetime, need a heart transplant... and that is terrifying."
But if that day comes, Vandenburgh knows her daughter will be in good hands.
Koch knows it too.
"Do you have anything you want to say?" Hennen asked her mother during a recent visit to the ICU.
"That it's the best program ever," Koch said. "I'm very lucky."
Lucky for the care, the support, and the early Christmas gift from a stranger.
"If it weren't for them my kids wouldn't have a grandma," Hennen said. "I wouldn't have my mom."
"It's the ultimate gift," Vandenburgh said.
On Thursday, Hennen says her Mom was able to move out of the ICU and into a room where she could finally reconnect with some of her grandkids. She won't be discharged any time soon but says it will be a very Merry Christmas.
Family gatherings during the holidays provide an opportunity to discuss important health-related wishes and to share important family medical histories that could save lives. Here are three resources if you’re interested in discussing three key topics.
How to talk about organ donation wishes with family:
How to begin discussing – and compiling – a helpful family medical history:
How to learn more about genetic counseling:
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