Life with 1 lung: Scarlett’s Estermyer shares story of son’s transplant

By Casey Hans
AAPSNews Service

Looking at teacher assistant Lori Estermyer, you wouldn’t know that she functions with just one lung, and why.

Lori Estermyer
Lori Estermyer, a teacher assistant at Scarlett Middle School, who lives life with one lung following a transplant for her son, Nathen.

Her daily routine at Scarlett Middle School involves working with a student who has a disability, taking her throughout the building for class, visits to the media center and lunch.

She stays upbeat and has faith that God guides her life.

Like everyone else, she goes to work each day, spends quality time with her family and muddles and slogs through the winter weather.

But, occasionally, the winter cold causes Estermyer to get short of breath. She attributes some of it to getting older and some to having just one lung. It’s just something she lives with. “It’s like having a bad back,” she says.

In the fall of 1995, Estermyer and her husband, Richard, each donated one lung to their 12-year-old son, Nathen, who had cystic fibrosis. Nathen lived only a short time after the transplant, dying in January 1996 but the Estermyers and their other two grown children and extended families carry on with their memories.

As organ donors, memories for the couple are nestled next deep in their chests, next to their hearts.

“Once we got the transplant, we thought the worst was over,” she said. But, Nathen developed two different strains of cytomegalovirus, or CMV infection, that caused complications.

For years after Nathen’s death, the couple did advocacy work for transplants. Lori Estermyer taught a unit on organ donation for sixth-grade health units in area schools and spoke with groups about transplants and organ donations.

For the past five years, the couple hasn’t done as much advocacy, because, as she explains, “life goes on and it was time to pass that work onto others. It was great. It was the final healing process for us.”

Where Richard Estermyer got his full lung capacity back after the lung donation, Lori did not. But that does not deter her from enjoying a life full of friends, family and promise.

Son Nikolis, daughter-in-law Tosha and grandchildren Haley, 10, Noah, 5 and Wyatt, 3 all live in the same house with the couple in Ypsilanti Township. They decided it made sense financially to buy a house and all move in together as a family, she said. Grown daughter Bethany lives in Washington State where she attends nursing school.

Nathen’s journey enveloped the family, as they lived with his disease throughout his early life, to the time he was put on the transplant list and the subsequent fundraising and surgery.

The surgery was done at the University of North Carolina Hospitals, one of the few centers in the country to do pediatric lung transplants.  Nathen’s surgery made news at the time and was the second surgery of its kind to be conducted on a child, she said. Many community groups assisted raising money for the family and their travel and living expenses, as they adjusted to a two-state mode of living.

When it was first determined he needed the transplant, the estimated cost of the surgery  – experimental at the time – was $150,000 to 300,000 but with complications, that rose to $646,000. The family paid only $400 thanks to their insurance company’s eventual approval, she said.

Estermyer remains upbeat, often with a smile on her face, sharing her thoughts and memories with others. Others who have lost young family members and want her advice occasionally approach her.

For them, she says that time can be a healer, but that it is a process and a path they must travel. There is no shortcut.

Estermyer is, and has always been, an animal lover, especially dogs – something that can be attested to by visiting her house. The family now has Daisy, a two-year-old golden Retriever, a 12-year-old Cocker Spaniel named Tyler and cats Ella and Kara.

But the memory of three special dogs remains with the family, all with ties to son and brother Nathen. Shiloh, a mixed-breed shelter dog owned by the family and Willie, a golden Retriever owned by another family and who visited Nathen in the hospital, are both now gone.

Because of Nathen’s love for Willie, after his death the family brought home Denver, another golden Retriever named after the Nathen’s favorite singer, John Denver. Denver the dog passed last year at age 13 and a John Denver song verse, as well as a carving of a golden Retriever, can be found on Nathen’s headstone in Belleville.

“The life expectancy for cystic fibrosis is now in the (age of) 30s,” she explained. “We knew he would die in our lifetime. But we had 10 really, really good years with Nathen.”


Lori Estermyer

Occupation: Teacher assistant at Scarlett Middle School in Pittsfield Township.
Residence: Ypsilanti Township
Family: Married 33 years to Richard; son Nikolis, 30 (he and his family live with them); daughter Bethany, 26, attends nursing school in Washington state; and Nathen who had cystic fibrosis and died in 1996 (and would have been 27); three grandchildren.
Community service: Worked for many years with pet therapy dogs in area schools and apartments and taught dog safety class for the Humane Society, advocated for the transplant movement and did fundraising surrounding her son’s needed lung transplant.
Hobbies: Loves to be outside, enjoys her pets and walking in the outdoors. “I spend a lot of time doing that,” she says.

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