Talking about your decision to donate

• I joined the NMDP Registry^SM, the world's most diverse listing of volunteer blood stem cell donors, which provides patients with access to more than 42 million potential donors in the world.
• NMDP^SM matches volunteer donors like me with thousands of patients with blood cancers or disorders like leukemia, lymphoma and sickle cell disease.
• For many of those patients, a blood stem cell transplant from an unrelated donor may be their best or only hope of a cure.

Conversation tip: Talk about where and why you joined the registry in the first place. Did a friend’s child need a transplant? Did you hear about the strong need for donors from diverse racial and ethnic backgrounds? This might help people understand your motivation for wanting to donate.

• I made a commitment when I joined the registry and pledged to donate to any searching patient. I want to follow through with that commitment. I can help give a patient a second chance at life and hopefully more time with their family.
• 75% of patients don’t have a fully matched, available donor in their family and depend on NMDP to find a donor. I’d want someone to help us if we were in the same situation.
• While every search through NMDP provides patients with access to more than 42 million potential donors in the world, there are still patients who can’t find their match. They’re waiting for their donor to join—that could be me.

• Talk about why you want to help this patient and how much it means to you. The best answer to this question is your personal motivation for donating.
• You might be asked for more information about the patient. It’s ok to tell people what you know about the patient and that identities are kept confidential to protect both the donor and the patient.

There are two methods of donation: peripheral blood stem cell (PBSC) and bone marrow. The patient’s doctor chooses the donation method that is best for the patient.

PBSC donation is a nonsurgical procedure that takes place at a blood center or outpatient hospital facility that’s experienced and participates in PBSC collections for NMDP.

• For five days leading up to donation, I’ll be given injections of a drug called filgrastim (or an FDA-approved similar) to increase the number of blood stem cells in my bloodstream.
• During a process called apheresis, my blood will be removed through a needle in one arm and passed through a machine that separates out the blood stem cells. The remaining blood is returned to me through the other arm.
• This method is similar to the one used for plasma donation. However, PBSC donation typically takes longer than a plasma donation. If I donate in one day, it could take up to eight hours. If I donate over the course of two days, it will take four to six hours each day.
• After donation, my collected cells are transported to the patient’s location for transplant.

• I’ll receive general anesthesia and feel no pain during the donation.
• Doctors use a needle to withdraw liquid marrow from both sides of the back of my pelvic bone.
• The marrow replaces itself completely within four to six weeks.
• After donation, my collected cells are transported to the patient’s location for transplant.

• To be able to donate enough peripheral blood stem cells (PBSC) for a transplant, more of my cells need to be moved out of my marrow and into my bloodstream. One way to do this is by receiving injections of filgrastim (or an FDA-approved similar) for five days leading up to donation. Filgrastim stimulates the bone marrow to make more blood-forming cells.
• Fewer than 1 percent of donors experience serious side effects, and no long-term risks have been found to date. (See the “Health concerns” section of this Q&A for more information.)
• Filgrastim is commonly used to treat cancer patients to boost their blood cell counts.

Conversation tip: If people are interested in learning more about the use of filgrastim, your NMDP representative is a good resource for more information.

• First, patients undergo chemotherapy and sometimes radiation to destroy their diseased marrow. Then, the donor’s healthy blood-forming cells are given to the patient, where they can begin to function and multiply.
• For a patient’s body to accept these healthy cells, the patient needs a donor who is a close match based on their human leukocyte antigen (HLA) type. HLAs are genes that code for proteins found on most cells in your body.

• There are two methods of donation: Peripheral blood stem cell (PBSC) donation is an outpatient procedure that takes place at a blood center or hospital; bone marrow donation is done in a hospital operating room and anesthesia is used. Both ways of donating are designed to be as comfortable and safe for me as possible.
• I’ve learned that there can be uncomfortable but short-lived side effects of donating PBSC. Due to taking a drug called filgrastim for 5 days leading up to donation, PBSC donors may have headaches, joint or muscle aches, or fatigue. PBSC donors are typically back to their normal routine within a few days.
• I’ve learned that those donating marrow receive general anesthesia, so they feel no pain during donation. Marrow donors can expect to feel some soreness in their lower back for 1 to 2 weeks afterward. Most marrow donors are back to their normal activities in 1 to 7 days.

Conversation tip: Encourage others to read our donor stories. These first-person accounts will help eliminate the myths your support network may have about the donation procedure.

• NMDP was founded in 1987 and has since impacted more than 140,000 lives. NMDP facilitated 7,180 transplants in 2023 and is a leader in blood stem cell transplantation.
• Since 1986, Congress has entrusted NMDP to operate the C. W. Bill Young Cell Transplantation program, the federal program that funds the national blood and marrow registry of the United States.
• NMDP is the hub of a global network that connects 422 leading centers worldwide, including donor centers, collection centers, transplant centers, cooperative registries and cord blood banks. They have standards designed to ensure that patients and donors receive high quality care and that government requirements are met.

Conversation tip: Suggest people visit the What We Do section of our website so they can learn more about NMDP.

• No. People join the registry and donate because they want to help others in need, regardless of compensation.

• I may have to take some time off. The time commitment for the donation process is generally 20-30 hours spread out over a 4-to-6-week period. I’ll have to participate in an information session, go to appointments for blood tests and complete a physical exam. These activities ensure that donation is safe for me and the patient.
• The appointments leading up to and the actual donation may change due to the patient’s condition. If the patient needs more treatment before their transplant, my donation could be postponed. If the patient is responding well to other treatments, he or she may decide not to move forward with transplant and my donation could be cancelled.
• Some states and employers will cover wages for time away from work for donation. I’m going to talk with my boss and look at the statutes for our state.
• NMDP covers all costs related to donation, including time off for missed work.

Conversation tip: Speak with your NMDP representative about your schedule. They can help you develop a plan that you can share with your support network to put them at ease. They can also help you find resources that may be helpful to you.

• In general, the overall time commitment for both peripheral blood stem cell (PBSC) and bone marrow donation is the same.
• If I’m asked to donate PBSC, there’s more of a time commitment before the donation due to time spent at appointments to receive my medication injections.
• If I’m asked to donate marrow, I’ll need more recovery time after donation.

• I may be asked to travel for the donation or any of the steps of the donation process. In 2023, 60% of donors traveled more than 300 miles. NMDP will coordinate the travel arrangements and cover any travel expenses.
• Travel is based on the needs and timeline of the patient and donor.
• To ensure that the procedure is safe for donors, NMDP only works with hospitals and facilities that are experienced in collecting marrow or PBSC, so if there isn’t a facility near us, I’ll probably need to travel.
• I won’t be traveling to the patient’s location for donation. My cells are transported to the patient’s hospital right after my donation.

Conversation tip: If you need to travel and you have children, your support network may be concerned about childcare. Ask your NMDP representative for more information about available childcare resources.

• All medical costs for the donation procedure are covered by NMDP or by the patient's medical insurance, as are travel expenses and other nonmedical costs. The only cost to me might be time taken off from work.
• NMDP will cover child and pet care for any time I’m away for donation.

• Not at all. NMDP will give me a Medical Services Coverage Card to cover all my donation-related appointments. NMDP will be billed directly.

• I’m encouraged to bring one companion to the donation. NMDP covers both my expenses and theirs. The role of my companion is to support me before, during and immediately following donation.

Conversation tip: There are many factors to consider when choosing who to bring with you to the donation. While you might like to have your spouse or partner accompany you, it might be more helpful if they stay home to take care of the household while you’re away. Another family member or friend might be a more appropriate donation companion in some situations. If needed, talk with your spouse or partner about the pros and cons of going with you to the donation. If you’re interested in having your children go with you to the donation, check with your NMDP representative.

• NMDP takes all the necessary precautions to ensure the safety and well-being of their donors. They have a safety committee, called the Donor and Patient Safety Monitoring Committee, that ensures safe and effective processes and procedures are used in donation.
• There are many steps involved in the donation process to ensure donating is safe for me. These steps include completing a health history questionnaire, a physical exam and blood tests.

• Donation won’t impact my ability to have children.
• If I choose to proceed with the donation process, I’ll need to put our pregnancy plans on hold.
• If I become pregnant during any stage of the process, I won’t be allowed to donate.
• It’s recommended that I consult with my personal doctor after donation and before becoming pregnant. If I decide not to see my doctor, waiting to become pregnant until my next menstrual cycle after the last dose of filgrastim is recommended.

Conversation tip: Breastfeeding will be interrupted by donation. New moms should talk with their NMDP representative for more information.

• Donation doesn’t impact my ability to have children.

• If I donate PBSCs, I may experience symptoms such as, but not limited to, headaches or bone or muscle aches for several days before donation. These are side effects from the filgrastim injections and go away shortly after the donation.
• Common side effects of PBSC donation include bruising at the needle site, numbness or tingling, and chills. These will go away shortly after the donation is completed.

• If I donate marrow, I can expect to feel some soreness in my lower back for a few days after donation or longer. Almost all marrow donors experience some pain, fatigue and stiffness following the donation. My marrow will return to normal levels within a few weeks.
• The majority of donors from the NMDP Registry feel completely recovered within a few weeks. A very small percentage (just under 1%) of donors experience a serious complication due to anesthesia or damage to bone, nerve or muscle in their hip region.
• Some donors said the experience was more painful than they expected, others said it was less painful.

• Recovery times vary depending on the individual and the type of donation. Most people who donate bone marrow can return to work, school and other activities within 1 to 7 days; the median time to full recovery is 20 days. The median time to full recovery for peripheral blood stem cell (PBSC) donation is 1 week (7 days).
• My NMDP representative will follow up with me until I report a full recovery.

Conversation tip: It’s likely you’ll need help with your daily chores while you’re recovering. Talk with your support network about your daily tasks and determine how they’ll be accomplished. It might be helpful to ask another family member or friend to help around the house until you can resume normal activity.

• You can support my decision to move forward in the process and be proud of my decision. I’ve researched the process and am educated about the side effects and risks. I’m willing to help this patient in need.
• Donation requires several appointments and a time commitment. I might need your help in a lot of different ways like rides to appointments or help taking care of my kids, pets or home. I may also want someone to talk with since this can be an emotional experience. You can be my advocate throughout the process by being there to help comfort me if I’m nervous, scared, excited or in some pain.
• There may be days leading up to donation or after donation when I don’t feel well. You can help take care of me and monitor my health. We can review the donation materials together so we’re both prepared for the side effects I may encounter.
• I’ll need your emotional support. I might be feeling emotional as I go through this process, and I may learn information about the health of the patient that may be hard for me.
• As I recover from donation, I might not be able to do all my normal household chores for a while. I may need help from friends and family.
• You can spread the word about donation. For people with life-threatening blood cancers like leukemia and lymphoma or other diseases, a cure exists. Help make sure every patient gets the blood stem cell transplant they need by making a contribution or joining the registry.

• I’ll have a NMDP representative with me during the entire donation journey. They’re professionals trained to advocate for, screen and educate potential donors about the donation process.
• NMDP has a Donor Advocacy team that represents the rights of all NMDP donors.
• You. Help me come up with questions to ask about the donation process. I’d like your support throughout the donation experience.

• You can spread the word about donation. For people with life-threatening blood cancers like leukemia and lymphoma or other diseases, a cure exists. Help make sure every patient gets the transplant they need by making a contribution or joining the registry.
• You can also host a recruitment drive to encourage others to sign up.

• Because donating blood stem cells is different from donating an organ, many people can donate and remain true to their religious and cultural beliefs. If those beliefs are important to you, let’s set up a meeting with our religious leader to discuss my unique opportunity to save a life.

• If I’m asked to donate, I may have to miss some classes or request extensions for my coursework. The time commitment for the donation process is generally 20-30 hours over a 4-to-6-week period, so it’s likely that there may be some schedule conflicts.
• As part of the donation process, I‘ll have to participate in an information session, appointments for blood tests and complete a physical exam. All these activities ensure that donation is safe for me and the patient.

• Before talking to your instructors, research your school and instructors’ policies for missed classes and review your course syllabus for key dates (i.e., presentations or exams).
• If you participate in work study, international study or have scholarships, check with your advisor to see whether absences impact eligibility for continued involvement in these programs.
• Suggest to your instructors potential solutions to meet key deadlines. This could include submitting coursework electronically, turning in work early or taking exams in advance.

• The time commitment for donation may spread out over several weeks, depending on a number of factors including travel for me, the patient’s condition and more. As a result, I may need some flexibility in my class schedule.
• The appointments leading up to and the actual donation may change due to the condition of the patient. If the patient needs more treatment before their transplant, my donation could be postponed. If the patient is responding well to other treatments, he or she may decide not to move forward with transplant and my donation could be cancelled.

• Yes, I can authorize my NMDP representative to speak with you. However, please know that they will not be able to provide specific details about my case due to confidentiality. Additionally, you can visit nmdp.org for comprehensive information about the donation process and time commitment asked of donors.

Conversation tip: It’s your choice to authorize your NMDP representative to speak with your instructors. This step may help address additional concerns and strengthen support for your decision.

• Recovery times for the peripheral blood stem cell (PBSC) and bone marrow procedures are different, so it ultimately depends on what I’m asked to donate.
• If I donate PBSC, I should be able to return to class, work and any normal activities in 1 to 2 days. However, the median time to full recovery is 1 week (7 days).
• If I donate marrow, I should be able to return to class, work and any normal activities within 1 to 7 days. It’s recommended that I plan to take a few days off from school, perhaps more if I need to be involved in activities that are physically demanding. The median time to full recovery for a marrow donation is 20 days.

There are limitations on exercise and physical activity that extend beyond the donation itself and will impact my ability to train, practice or participate in athletics. These limitations vary depending on what I’m asked to donate, PBSC or bone marrow.

• Avoid strenuous activity for the rest of the day after donation
• Avoid heavy lifting or pulling for 7 days
• Avoid contact sports during the days leading up to donation while I receive the medication injections and for 7 days after donation

• Through week one, it’s recommended that I avoid heavy lifting, bending or exercise; avoid lifting more than 10 lbs; and allow time between periods of heavy activity throughout the day.
• Through week two, it’s recommended that I avoid strenuous activity such as jogging or running.
• Through week four, it’s recommended that I avoid contact sports.

Conversation tip: Athletics coaches are just as concerned about your attendance and well-being as your instructors, so remember to share this information with them. Ultimately, your choice to donate will impact your ability to participate in athletics training and competition longer than it will affect your ability to attend class.

There are many ways that our school and students can get involved, including:

• Bringing NMDP Chapters to our school. Visit BeTheMatchOnCampus.org to join a grassroots effort of students around the country working to raise funds, educate and build the NMDP Registry on their campuses. Chapter participation builds leadership skills, resumes and more.
• Host a registry recruitment event on campus.
• Encourage students to join the movement and help spread word of the NMDP mission through their social networks. Help tell my donation story to students and the campus community through our school newspaper and other channels

The discussion of paid time off (PTO) versus leave without pay will be unique to each donor depending on your job, your direct supervisor and the policies of your organization. In place of talking points, the following tips will equip you to prepare for this important conversation.

• Before you discuss this topic with your direct supervisor, check your employee policy about leave for medical reasons. Some states have legislation requiring employers to give workers time off for donation without using sick time or vacation. Find out if your state has donor leave protection.
• If your organization doesn’t have a paid donor leave policy, your supervisor might ask you to take PTO or vacation time for appointments and the actual donation. If you don’t have paid time off as part of your employment, your supervisor might expect you to take leave without pay. If this becomes a significant barrier to your donation, please contact your NMDP representative to discuss resources that may be available to you.

• Recovery times for the peripheral blood stem cells (PBSC) and bone marrow procedures are different, so it ultimately depends on what I’m asked to donate.
• If I donate PBSC, I should be able to return to work and any other activities in 1 to 2 days, depending on my job responsibilities. However, the median time to full recovery is 1 week (7 days).
• If I donate marrow, I should be able to return to work, school and any normal activities within 1 to 7 days. If possible, it’s recommended that I work a half day upon returning to work and increase my schedule as I’m able. If my job involves physical labor or heavy lifting, more recovery time may be necessary. The median time to full recovery for a marrow donation is 20 days.

• Wait 24 hours before operating heavy machinery, climbing ladders or working from heights
• Wait 3 days before piloting a plane or working as flight crew; however, it’s ok to fly as a passenger

• Avoid heavy lifting, bending or exercise, as well as lifting more than 10 lbs. during the first week
• Allow time between periods of heavy activity throughout the day during the first week

• Yes, I can authorize my NMDP representative to speak with you. However, please know that they won’t be able to provide specific details about my case due to confidentiality. Additionally, you can visit nmdp.org for comprehensive information about the donation process and time commitment asked of donors.

Conversation tip: It’s your choice to authorize your NMDP representative to speak with your direct supervisor. This step may help address additional concerns and strengthen support for your decision

• Hosting a donor drive at our office to encourage friends and other supporters to join the registry
• Giving a financial gift and getting information on how our organization can support NMDP through monetary contributions and workplace giving programs
• Volunteering for NMDP and getting information about how employees can volunteer with them
• Helping tell my donation story as a way to encourage others to join the NMDP Registry and show how our organization supports employees’ personal causes.

• No, I’m not sick. I’m helping someone who is really sick so they might get better.
• Someone’s blood-making cells aren’t working right and they need new ones. A doctor is going to help me give some of my blood-making cells to them, and my body will make new ones.
• It’s nothing to be afraid of—I’ve been given the opportunity to do something good for someone who really needs help. There are a lot of opportunities to do good things for people. Can you think of some ways you can help other people?

• I signed up to help anyone who needs new blood-making cells. Someone got sick, and their doctor is checking to see if I’m the best person to help them.
• I don’t know why they’re sick. Nobody knows why some people get sick and others don’t. The important thing is to help those that are sick get better.

Conversation tip: It’s ok to tell your children the information you know about the patient, like their age or gender. They may also be curious to learn more about the patient's disease or the transplant process.

• Children: You have to be 18 years old to donate. When you’re 18, you can decide if you want to sign up to be a donor.
• Teens: You need to be 18 to donate because you must legally be able to decide for yourself. For now, you can join the pre-registry, and NMDP will get in touch when you turn 18. I’d love to help you with that.

• There are only certain clinics and hospitals that are experienced in donation. I need to go to one of those places so that I’m taken care of really well.
• This trip is for me to give someone something that they need so they can get better. Once I’ve donated, I’ll come home. I can have one person go with me, and that person needs to be an adult.

Conversation tip: If you’re interested in having your child(ren) go with you to the donation, check with your NMDP representative regarding guidelines and recommendations.

• Peripheral blood stem cell (PBSC) donation: My doctor is going to give me shots so I can make a lot more blood-making cells for the patient. These shots are going to make me feel like I have the flu. I might be tired and achy for a few days before donating, but I’ll feel better a few days after the donation.
• Bone marrow donation: Just like lots of other surgeries, I might be sore and tired after I come home from the hospital. I’ll be walking pretty slowly for a few days and won’t be able to lift some things, but I’ll be back to normal in a few weeks.

• Yes, my blood-making cells will return to normal levels, just like when people donate blood.

• I may not feel well for a few days before or after I donate. It would be very nice if you if you could help me with chores around the house while I’m getting better.