Local woman gets good news about bone marrow transplant
Steamboat Springs — Deb Freseman is scheduled to receive the gift of life at a Seattle Hospital next month. But she won’t know who her benefactor is for at least another year.
Freseman, 44, suffers from a rare bone marrow disease called myelofibrosis. Her doctors have told her she’s already living on borrowed time. Without the transplant, the prognosis is that she would live only another one to four years. Now, an unknown donor identified by the National Marrow Donor Program has come forward.
“It’s kind of overwhelming,” Freseman said this week on the eve of a trip to North Carolina to visit family. “It’s a feeling of so much gratitude. It takes a phenomenal person to do this. I’m very excited and very scared, both.”
The bone marrow bank will withhold personal information about both Freseman and the donor from one another for 12 months after the transplant has been deemed successful.
That step is taken to protect both parties from the intense emotional outpouring that is often associated with these cases.
Freseman’s fear of the transplant stems from the knowledge that in the case of patients whose treatment is necessitated by myelofibrosis, 30 percent to 40 percent of bone marrow transplant patients do not survive the procedure. The danger is not inherent in the procedure itself; it is not unlike a blood transfusion.
The downside is contained in the possibility that the transplant will not take hold in Freseman’s body or that the new marrow will attack her organs.
Freseman learned six years ago, just before she turned 37, that she had the disease, which is gradually converting her bone marrow into fibrous scar tissue. That change is interfering with her body’s ability to manufacture blood cells.
“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.
Because her quality of life has been relatively good, Freseman opted to postpone a marrow transplant.
The disease, and the high risk involved in the cure, put her in the delicate position of weighing the good life she enjoys today, with the reality of her own mortality. But the situation is more complicated than that.
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.
Freseman’s sister has multiple sclerosis, an immune system disorder that means she would probably only be used as a donor as a last resort.
The chances that any two unrelated individuals will achieve a match vary widely with the frequency that the individual’s antigens are found 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.
Freseman’s antigens have proven to be very rare.
“We checked the international registry and there are two potential donors out of 5 million people,” Deb’s husband, David, said in January.
The donor that has now been identified is a perfect match for her antigens, she said.
Deb and Dave will leave Steamboat for Seattle on Oct. 19 and she has her first appointment at the Seattle Cancer Care Alliance three days later. A week after her arrival, Deb will undergo chemotherapy and total body irradiation. The purpose is to kill her remaining bone marrow and her immune system with it. Her own immune system must be eliminated to allow a new one, generated by the new bone marrow, to take hold. The transplant is scheduled to take place Nov. 14 or 15.
If all goes well, she will remain in the hospital for 30 days to guard against infection. After that, the Fresemans will live in an apartment close to the hospital for another 70 days.
Sept. 11, 2002, was an emotional day in the Freseman household. It was a day of national mourning. It was David’s birthday. And it was a day that signified Deb’s rebirth. She got the call around noon informing her that a donor match had been found and promptly called her husband at work with the news.
“I feel so very blessed,” Deb said. “It is the gift of life. I can look forward to so many things in life now.”
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