Fight for life
Local woman suffers from rare bone marrow disease
Deb Freseman is playing a high stakes game of poker, or more appropriately in her case, a hand of euchre. The stakes are nothing less than her long-term health, even her life.
Deb isn’t really a gambler. She’s an emergency room nurse in her early 40s with a pretty smile and a mild Southern accent that can be traced to North Carolina.
Deb suffers from a rare bone marrow disease called myelofibrosis. The disease is gradually converting her bone marrow into fibrous scar tissue, interfering with its ability to manufacture blood cells.
Deb found out six years ago, just before she turned 37, that she had the rare disease.
“The doctors told me their best guess at that time was that my life expectancy (without a bone marrow transplant) would be about five years, and we’re six years down the road now,” she said.
So why hasn’t Deb had a bone marrow transplant? The gamble Deb is taking lies in the answer to that question. The survival rate in bone marrow transplants necessitated by myelofibrosis is between 60 percent and 70 percent. Deb has to weigh the good lifestyle she currently enjoys against the downside the 30 percent to 40 percent chance that she might not survive the transplant.
The complexity of the decision Deb faces is ratcheted up exponentially by the fact that a search of a worldwide database of registered marrow donors kicks out only two suitable matches for Deb. Then there is the fact that the disease has entered the advanced stages and the prognosis for her survival is now one to four years without a transplant.
“We checked the international registry and there are two potential donors out of 5 million people,” said Deb’s husband, David.
“And one of them lives in Ireland,” Deb added.
That means the chance there is a donor match in Northwest Colorado is very slim. But the Fresemans, together with local blood drive organizer Terry Sherrill, are pushing ahead with a plan to host a local drive to register willing bone marrow donors. The drive will tentatively be held Dec. 8 at Yampa Valley Medical Center. They aren’t conducting the drive solely in hopes that they’ll find a match for Deb, although that would be a welcome miracle, but in hopes of helping any patients who are looking for a marrow donor.
The level of match for bone marrow transplants must be greater than that for organ transplants heart and liver, for example. The best chance for a successful match is within one’s own family. About 30 percent of patients have a family member, most often a sibling, who is suitably matched and able to donate marrow.
Deb has the great fortune to have a sister, but her sister has multiple sclerosis, an immune system disorder that means she would probably be used as a donor only as a last resort.
The chances of any two unrelated individuals matching varies widely with the frequency that person’s antigens are fond in the general population. Antigens are proteins that, when injected into a body, stimulate the production of antibodies that fight and reject the foreign antigens.
Unfortunately, Deb’s antigens are proving to be very rare.
Deb has made some changes in her life since she was first confronted with her own mortality six years ago. She removed herself from an abusive earlier marriage life had suddenly become way to precious to waste it on a bad relationship. She met David and moved to Steamboat Springs for the quality of life and to continue her career as an emergency room nurse at Yampa Valley Medical Center. And she fulfilled a dream by serving as a flight nurse on an emergency medical evacuation aircraft based in Steamboat Springs for a year.
That dream ended when her spleen became enlarged as a result of her bone marrow disease and she was medically grounded.
Just as important to Deb is the way she lives her daily life.
“I want to approach each day as if I’d been give a purpose or a meaning for that day. I want to be able to feel that this day was given to me for a reason, that I was able to help myself and maybe someone else,” Deb said.
Her husband is optimistic Deb will get a bone marrow transplant and their lives together will go on as before. Most successful bone marrow transplant recipients regain a normal life span.
“Deb is a great euchre player,” David smiled.
To reach Tom Ross call 871-4210
or e-mail email@example.com
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