Written by Elizabeth Swaringen for UNC Health Care
CHAPEL HILL, NC — Gwen Tyson yearns to climb on her bicycle and again pedal her usual 14 miles at daybreak.
That ride will be pure joy for the 58-year-old mortgage banker from Kitty Hawk, N.C., compared to the bumpy roller-coaster adventure that has included two bone marrow transplants, too-many-to-count blood transfusions and platelet infusions, and more patience than Job ever imagined.
Since 1985, Tyson has lived with myelofibrosis, an uncommon but serious bone marrow disorder of unknown cause that slowly disrupts the body’s normal blood cell production. Over time, the marrow makes too many cells and eventually gets replaced by fibrous tissue, rendering the marrow environment inhospitable for normal blood cells to grow. The liver and spleen attempt to help, only to become fibrotic and enlarged themselves. Ten to 15 percent of myelofibrosis patients develop leukemia.
“I was living an active life and didn’t think much about the disease,” Gwen said. “Then, I was having pain from an enlarged spleen, and I started getting too tired to ride my bike. Although I had been under the care of a hematologist, my bike-riding partner, Tess Judge, insisted that I seek care at UNC Hospitals. She knew their reputation and about the strong collaboration between UNC Lineberger Comprehensive Cancer Center and our local Outer Banks Hospital.”
Gwen and her husband, Marty, 62, came to UNC Hospitals in February for evaluation and hope. The recommended treatment was a bone marrow transplant, and Gwen’s sister, Linda Warren of Carolina Beach, was the near-perfect match.
Gwen underwent chemotherapy to prepare her body for the new bone marrow which was transplanted March 1. The new cells didn’t like their new home. Complications ensued, but Gwen and her team never gave up hope and focused on a second transplant. Again, with Linda as donor, new cells were transplanted April 21. Slowly, Gwen’s blood counts are rising.
“Myelofibrosis is not an easy disease to treat with transplant, even though that is the best recommended course of treatment,” said Thomas C. Shea, MD, professor of medicine at the UNC School of Medicine, director of the bone marrow transplant program and associate director for outreach programs at UNC Lineberger.
“The problem is trying to figure out when to intervene with a transplant,” Shea said.
“In Gwen’s case, she had not developed leukemia which was good, but she did not have very healthy marrow for the new cells to work in. The second transplant gave her a second chance for better recovery of her blood counts. It’s a very slow process, but it appears she is turning the corner.”
When the Tysons came to UNC Hospitals in February they stayed at SECU Family House, a 40-bedroom hospital hospitality house minutes from UNC Hospitals. Family House provides comfortable, convenient and affordable housing for seriously ill adult patients and their family member caregivers.
Gwen was released to Family House for the mandatory 100-day post-transplant stay. Marty, who had stayed by Gwen’s side and slept on the pull-out couch in her hospital room, joined her there.
“The first time we stayed at Family House I was a skeptic and had decided that dorm living was not for me,” Marty said. “But my impression totally changed very quickly, and I remain impressed by what goes on there. The support from staff, volunteers and fellow residents is incredible. Everyone there is extraordinary.”
“He loves to cook and talk so the kitchen was just the place for him,” Gwen said of her husband of 39 years. “Family House is a wonderful resource, and I even met someone else with myelofibrosis there.”
Now, the Tysons stay one night at Family House when they come to UNC Hospitals for Gwen’s monthly follow-up appointments. As needed, Gwen is able to receive blood transfusions and platelets at Outer Banks Hospital.
“We enjoy an active collaboration with the Outer Banks Hospital, and it’s a relationship that has really blossomed in the last 18 to 20 months,” Shea said. “Patients benefit from the best of both worlds. For Gwen, her care is jointly managed by Dr. Paul Armistead here and Dr. Jose Acostamadiedo in Kitty Hawk. Now that her condition is stable and her numbers are on an upward trend, I envision her spending more time in Kitty Hawk and less time in Chapel Hill, which is the goal.”
For Marty and Gwen, the care is seamless.
“It’s hand-in-glove how the respective teams at each hospital work together and how the teams from each hospital work together,” Marty said. “And we’ve always felt that everyone was giving 110 percent. Even when Gwen had complications and the numbers weren’t looking good, we knew everyone was doing all they could.”
“The tribute here really goes to Gwen and Marty,” Shea said. “Their patience, perseverance and persistence have made the difference.”
Media contact: Tom Hughes, (919) 966-6047, firstname.lastname@example.org