Blood Marrow Donor Promotes Giving (A Lot) Until It Hurts (A Little)

By Nancy K. Crevier

“I just want to get the word out,” said Caitlin Weber. The word — or words, rather — are “bone marrow donor registration” and it is a cause that is dear to the 2004 Newtown High School graduate and current medical student at Albany Medical College in New York.

Caitlin has been registered as a bone marrow donor since the spring of 2005 when William and Mary College in Virginia, where she did her undergraduate work, held its annual spring drive to encourage students to register. It coincided with a time in her life when that issue was particularly relevant to her.

“I was hearing a lot about it at home, because my aunt had recently been diagnosed with leukemia, and needed a bone marrow transplant,” Caitlin recalled. Signing up to join the 9.5 million other members of the National Marrow Donor Program (16.5 million worldwide) was a no-brainer for her, she said, “And it is really easy to do. It is just a swab inside the cheek.” Bone marrow donor registrants are also considered for the nonsurgical PBSC (peripheral blood stem cell) donation process, which extracts cells from the circulating blood, for transfusion into a recipient.

The swab indicates tissue type, and markers on the cells are then used to indicate a match between donors and bone marrow recipients. Despite the millions of registered donors, a match is difficult to find. According to the Be The Match (formerly the National Marrow Donor Program) website, www.marrow.org, only one in 540 donors becomes a match. Seventy percent of patients do not have a family member who is a match.

Numerous diseases can be effectively treated through bone marrow or cord blood transplants, including leukemias and lymphomas; multiple myeloma and plasma cell disorders; severe aplastic anemia; inherited immune system disorders including severe combined immunodeficiency and Wiskott-Aldrich syndrome; hemoglobinopathies; inherited metabolic disorders; myelodysplastic and myeloproliferative disorders; and histiocytic disorders.

After registering, Caitlin was actively involved in getting the word out to other students on campus, and in her senior year at William and Mary served as campus education chairperson for the bone marrow registration drive.

This past November, after seven years with the registry, Caitlin received the call for which she had waited. The program believed she was a match for someone in need of healthy bone marrow.

“When I registered, I really hoped I would be matched,” said Caitlin, “but I realized the odds were against it happening.”

The November call was the second time Caitlin had been contacted by the program. One year earlier, it had seemed she would be donating, but the match did not happen.

This time, it appeared the match was much closer. “The match is hardly ever 100 percent,” said Caitlin, “so they just try to get as close a match to the markers as they can between donor and recipient.” She was asked to do blood work to verify the match, and in December, a second phone call disclosed that she was the closest match to date. More testing and examinations quickly followed, and Caitlin donated a unit of her own blood for the surgical procedure that was originally scheduled for early January.

“Then, for some reason, the patient wasn’t ready, and the date was pushed back two weeks,” said Caitlin.

On Sunday, January 22, Be The Match flew Caitlin and her mother, Kim Weber, from Albany to Washington, D.C., where the procedure took place at Georgetown University Hospital.

“The procedure can take place at any hospital that does it often, and Washington was the most convenient for us,” said Caitlin. Donors are not responsible for the costs incurred in donating. The program paid airfare, a hotel for one night, hospital and surgery costs, and any medications required for recovery, said Caitlin.

“We had really good support from the program, all the way through,” Caitlin said. “They answered all of my questions, and were so helpful.”

Just months away from becoming a doctor herself, Caitlin was on the other side of the fence while at Georgetown.

“I had never stayed overnight in a hospital as a patient, and I had never had surgery or general anesthesia,” she said. “I was a little nervous. It was a good learning experience for me and gave me a huge appreciation for what the nurses and staff does for patients,” she admitted.

Besides letting people know how simple it is to register to become a bone marrow donor, Caitlin said that she wanted potential donors to know that the procedure is not terribly painful or disruptive. As it is surgery, there is a slight threat of infection.

The approximately two-hour procedure involves large needles inserted into the back of the hipbone, in two places, to withdraw about one liter of bone marrow.

“When I woke up, I had a little backache and I was tired. I did have some dizziness and felt lightheaded when I stood up, but that passed,” Caitlin said. After one night in the hospital, she was released.

“I had some pain that required pain medication for a few days,” she said, “but I missed only two days of school. My school was very understanding and supportive.”

The fatigue she felt following the procedure was the worst for her. Always a bit anemic, she had had to boost her hemoglobin with iron supplements for the donation, but fell below her desirable numbers postsurgery. “And I couldn’t drive for a few days, because of the medication I was taking. That was hard for me,” Caitlin said.

“I would say I felt 100 percent again within a week. Everybody is different, of course, in how they respond,” she said. Typically, according to Be The Match, bone marrow and blood cell donors experience a complete recovery of presurgery levels of marrow and cells in four to six weeks.

Caitlin knows that her recipient is a 55-year-old woman with a plasma cell disorder, who probably lives in the United States. Other than that, she does not know anything about the woman who has received her bone marrow.

“A year from now, if we both agree, we can have contact through letters. I would like to hear from her. I’ve thought about her a lot and would like to meet her, and know how she is doing,” said Caitlin.

Ten thousand patients need a marrow transplant to improve their chances of survival. Only half receive one. To find out more about becoming a bone marrow donor or to donate to support the program, visit www.marrow.org or call 800-MARROW-2 (800-627-7692).

“Don’t be afraid to become a donor,” Caitlin stressed. “What little pain there is, is very manageable. I want people to know how easy it is to get into the registry and how much of a benefit to a patient [donating] can be, whether it cures the recipient or only gives them some extra years. I think the amount of pain and any time away from school or work,” she said, “is worth what it can do for someone.”