Woman waits for lungs, welcomes transplant program
By Sue Thoms
The Grand Rapids Press
GRAND RAPIDS, Mich. (AP) — All that’s left is the waiting.
In her quest for new lungs, Anya Maciulewski has left behind family and friends in Walker and moved to Pittsburgh, where she waits for a transplant that she hopes will let her breathe easy once again.
The 27-year-old woman and her mother, Nancee, faced plenty of uncertainty in the transition, as they looked for housing and fought to keep Anya’s lungs functioning in the hot, humid weather.
But from the day they packed the oxygen tank in the car and made the trip east, the Maciulewskis say they have been overwhelmed by blessings — including free lodging and good health.
“I have never felt so much at peace as I am now,” Nancee said. “We just feel really blessed to be here.”
As she waits for a double-lung transplant, Anya was happy to hear that patients might soon be able to undergo lung transplants in Grand Rapids. Spectrum Health’s transplant program, expected to begin this fall, will make a big difference for patients and their families in West Michigan, she said.
“I think it will be a great opportunity for them not to have to travel so far — especially for their family,” she said. “It gets to be a long haul after a while.”
Anya’s wait for a transplant at the University of Pittsburgh Medical Center could be six months to two years, the transplant team says. Because donor lungs could become available at any time, Anya must be within a four-hour drive of the hospital.
To make the move, Nancee quit her housecleaning job, and the pair had to leave behind Anya’s dad, Tom Maciulewski, and her brother and sister, as well as friends and their church.
“If they were able to do what she needed right there (at Spectrum), that would be tremendous,” Nancee said.
“We would be eight miles away instead of eight hours. That says it all.”
Because of Anya’s health complications, Nancee said they would likely be at Pittsburgh’s high-volume transplant center even if there were a local transplant program. The two Michigan lung transplant centers — at the University of Michigan and Henry Ford Hospital in Detroit — were unable to take on her case.
Anya’s lung damage is likely linked to cancer treatments she had as a child, her mother said. She was diagnosed with a brain tumor at age 2, and the cancer recurred when she was 11 and then again at age 12.
Because she stopped growing in third grade and stands 4-foot-11, Maciulewski needs small donor lungs.
Despite the uncertainty and the disruption to their lives, Anya and Nancee say they have been overwhelmed with blessings as they settle into their new home.
“God has been great in all of this,” Anya said. “We’ve found pastors and made new friends here.”
Finding an apartment was difficult at first. Because of her severely limited lungs, Anya requires a first-floor apartment with no steps — not even steps leading up to the door. That was a challenge to find in hilly Pittsburgh. They stayed in a hotel unit with a kitchenette for 10 weeks as they house-hunted.
One day, they got word that a man was willing to offer them quarters in the walkout basement of his home in Green Tree, four miles west of downtown Pittsburgh. Their host, a 33-year-old financial planner, learned of the Maciulewskis’ dilemma through an extended network of friends of friends. His parents had offered lodging to the families of transplant patients when he was a child, and he remembered how much it helped them.
The basement has two bedrooms and a sliding glass door that opens to a big, flat backyard. Anya’s dad brought a grill, so they can cook meals outside. Their host checks on them every day and occasionally eats meals with them, Nancee said.
The Maciulewskis pay no rent, though they help pay for utilities. Friends are raising money through a fund set up by the National Foundation for Transplants to help cover their expenses.
“I love it where we are now,” Anya said. “When it’s a good day, I can go outside and enjoy the weather.”
Pittsburgh, like Grand Rapids, has endured a spate of hot humid weather, which is not good for Anya’s lungs. But she has remained healthy enough to avoid any hospital visits. She checks in with a transplant coordinator every week or two. So far, she has not heard any word about a potential donor organ.
She and her mother pass the time playing games (Farkle Dice Game is a nightly ritual), watching videos and driving around to see the city and countryside.
“I just have to keep my hopes up,” Anya said. “You never know how long it can take.”
