A: Donors never pay for donating, and are never paid to donate. All medical costs for the donation procedure are covered by the National Marrow Donor Program (NMDP), which operates the Be The Match Registry, or by the patient’s medical insurance, as are travel expenses and other non-medical costs. The only costs to the donor might be time taken off from work.
A: Doctors look for a donor who matches their patient’s tissue type, specifically their human leukocyte antigen (HLA) tissue type. HLAs are proteins — or markers — found on most cells in your body. Your immune system uses these markers to recognize which cells belong in your body and which do not. The closer the match between the patient’s HLA markers and yours, the better for the patient.
A: On average, about one in 540 U.S. Be The Match Registry members will go on to donate bone marrow or peripheral blood stem cells (PBSC) to a patient. Because of the vast variation in tissue types, we can’t predict an individual registry member’s chance of donating to a patient. If you have a relatively common tissue type, you might be one of many who could match a searching patient. If you have an uncommon tissue type, you may never match a patient, or you might be the only one out of more than 10.5 million registry members who can save a person’s life. Every person who joins the registry gives patients more hope of finding the match they need. The most important thing you can do as a registry member is to stay informed and committed so that if you’re selected as the best donor, you’re ready to move forward.
A: Becoming a donor requires a time commitment. Before you donate, there are several steps to make sure you are the best donor for the patient. These steps include an information session to provide resources to help you make your decision, as well as appointments for additional blood tests and a physical exam. The time needed for the actual donation depends on the donation procedure.
On average, the entire process can take 30 to 40 hours, including travel time, over 4 to 6 weeks. Marrow and PBSC donation require about the same total time commitment.
A: Marrow donation is done under general or regional anesthesia so the donor experiences no pain during the collection procedure.
Discomfort and side effects vary from person to person. Most marrow donors experience some side effects after donation. Common side effects of marrow donation include:
Some donors said the experience was more painful than they expected; others said it was less painful. Some donors describe the pain as similar to achy hip bones or falling on their buttocks. Others say it feels more like a strained muscle in the back. The ache may last a few days to several weeks.
A: We want to assure donor safety, but no medical procedure is risk-free. The majority of donors from the Be The Match Registry feel completely recovered within a few weeks. A small percentage (1.3%) of donors experience a serious complication due to anesthesia or damage to bone, nerve or muscle in their hip region.
The risk of side effects of anesthesia during marrow donation is similar to that during other surgical procedures. Serious side effects of anesthesia are rare. Common side effects of general anesthesia include sore throat (caused by the breathing tube) or mild nausea and vomiting. Common side effects of regional anesthesia are a decrease in blood pressure and a headache after the procedure.
We take all the necessary precautions to ensure the safety and well-being of the donor. To learn more, see Safeguarding Donors and Patients.
A: Donors may experience headaches or bone and muscle pain, similar to a cold or the flu, for several days before collection. These are side effects of the filgrastim injections that disappear shortly after donation. Other common side effects are nausea, trouble sleeping and tiredness. Less than one percent (0.6%) of donors experience serious side effects from filgrastim.
The PBSC donation procedure can also have side effects. Some donors experience tingling around the mouth, fingers and toes and mild muscle cramps. This is caused by the anti-coagulant (blood thinner) used in the apheresis procedure. These symptoms are easily treated with calcium replacement or by slowing down the procedure. Other common side effects include bruising at the needle site, chills and a decrease in the blood platelet count.
A: Yes, however, fewer than 1% of PBSC donors experience a serious side effect from the donation process.
PBSC donation may require placement of a central line if you do not have suitable arm veins. A central venous line is a sterile tube that is inserted into one of the larger veins — the femoral vein, internal jugular vein or subclavian vein. Based on our experience, 19% of women and 3% of men require central line placement. The risk of serious complications from use of a central line is small. A central line will be placed only with your consent after you have received information about the possible risks.
Another potential risk is associated with filgrastim injections. Though filgrastim is commonly used to treat cancer patients, the use of filgrastim in healthy donors is fairly new. Therefore, no data are yet available about the long-term safety. We began using filgrastim to aid in transplants in the 1990s. Since then, no donors from the registry have reported any long-term complications from filgrastim injections.
A: Some transplant centers may provide up to three updates within the first year after transplant. However, some transplant centers do not provide updates.
During the first year after transplant, some centers allow anonymous communication between you and your recipient. To learn more, see the guidelines for anonymous contact and play the What Can I Send? game for examples of the guidelines in action.
Some centers allow direct contact between donors and recipients one or more years after the transplant, if both you and your recipient consent. Some centers do not allow you to have contact with your recipient at any time.