• Donation: The Full Story

    Everything you need to know about bone marrow and peripheral blood stem cell donation

  • Step 1: Registration

    The donation process begins at the Registry, our national pool of potential, unrelated donors. To join, you must complete a kit, including a consent form and cheek swabs. Once registered, you remain available to be matched to donors until you reach age 61, or ask to be removed.

    Please don't join more than once as this creates duplicates in the registry. Even if you leave the military, you will still be available to be matched to donors within the national registry.

    To join through our program, you must meet 3 criteria:

    (Not affiliated with the U.S. Department of Defense? You may still register through a civilian Donor Center, such as Be The Match.)

    What is the #1 question asked of our recruitment staff?

    Is all of this paperwork really necessary to register? Yes! Here is why...

    • Educational materials:  Do not register until you thoroughly understand about donation and the commitment you are making. 
    • Consent form:  Read this carefully before signing. If you have questions, please contact our office at 1-800-627-7693 or [email protected] 
    • Identifying and contact info:  It is critical that we are able to find you quickly should you be matched to a patient. Please provide all of the requested information, including your date of birth and Social Security Number (important for locating you, even after you have moved repeatedly and changed phone numbers).  If you do not include this information, we will not process your kit.
    • Health information:  Please complete this section as honestly as possible. Certain medical conditions and illnesses are incompatible with donation. If your health status precludes you becoming a donor, we will send you notice.  
    • Buccal (cheek) swabs:  Follow this instructions included in your kit for completing your cheek swabs. You will swab each quadrant of your mouth, between your cheek and gums, using the included cotton swabs. 
    • Envelope:  Believe it or not, but that manila envelope is an important part of the kit. Please add the date, your last name, and your date of birth to the front block.
  • Step 2: HLA Typing

    Donors and patients are matched based on the Human Leukocyte Antigen (HLA) type.

    Secrets from the HLA typing lab:

    • Registration kits are amazingly shelf-stable. If they stay dry and at room temperature, they can last for many weeks or even months. This allows our volunteer recruitment assistants to ship kits from all over the world without fear of spoilage.
    • When your kit arrives at our lab, the first thing we do is assign your donor identification number. This allows us to list your HLA type on the registry without revealing your personal, identifying information. 
    • Next, the HLA typing process:  We examine 6 different genes [12 loci]: A, B, C, DRB1, DQB1, and DPB1. Your DNA is extracted from the swabs, amplified, several molecular tests are applied. The data is then analyzed to determine your HLA type:  Lasers take "pictures" of the results, which are then interpreted by a computer program to map out the base pair sequence.
    • Your consent form is reviewed and - if it meets the qualifying criteria - scanned into our proprietary database. 
    • It may take several weeks for all of these steps and for you to be available to match to patients in need of transplant. You should receive a "welcome" email and/or text message letting you know when the process is complete.  
  • Step 3: Donor-Patient Matching

    Just in America, each year, more than 17,000 individuals are diagnosed with a disease that requires a bone marrow transplant (HRSA.gov, 2018). Ideally, donors and patients match at all of their HLA loci (10 of 10 match), plus by blood type, health status, and a few other factors. In the real world, patients must often take what they can get. And we mean that literally. Donor availability - can or will the donor give cells right now - is a factor that cannot be understated. Here is the situation by the numbers... (courtesy of NMDP).

    Committed donors matter.

     

    Please do not enroll as a bone marrow donor unless:

    a. You are willing to actually donate

    b. You will donate to anyone anywhere

     

    It is better to never join than to back out once you are matched to a patient.

    Aren't they cute? The groom was the donor. The officiant was his patient. This is what success looks like.

  • Step 4: Donation

    Buckle up, friends, because this is where it gets real.

    It all begins with a phone call.

    And an email message.

    Or maybe a text message.

    Then, in a few days, a letter.

    And then we'll call your mom.

    Or your Command.

    We do what it takes to find you.

    It's not harassment.

    It is persistence.

    Once you are matched a patient, we keep trying find you until you tell us that you cannot or will not proceed.

    Why?

    Because patients' lives hang in the balance.

    Your assigned Coordinator will be your guide, advocate, and concierge for the donation process.

    Your Coordinator will begin by confirming your identify, providing you some basic information, and asking about your schedule. Then, you will complete a health history questionnaire. This is usually done over the phone and takes about 20 minutes. Because you will be answering some pretty personal questions, you should find a quiet spot to have this conversation. Do you work on a submarine or somewhere else without "quiet spots"? Let us know and we'll find an alternative.

    We'll also send you some paperwork. Each step of the process has associated consent forms. Be sure to read everything and ask lots of questions. Your assigned Coordinator wants you to be well-informed and comfortable.

    Some donors are then asked to go to a local laboratory for a blood draw. We'll work around your schedule and make all of the arrangements. You just need to show up.

    If everything looks good at this point, then we'll ask you to have a physical exam.

    Your exam might be at a local provider, or we may ask you to travel to a suitable medical facility.

    If you travel, then we will make all of the arrangements and pay all of the medical and travel-related expenses.

    Donation should cost you nothing but time and cells. (While most of the large expenses are paid directly by our program, we typically reimburse donors for out-of-pocket expenses such as meals, luggage fees, or parking. If this will be an issue, please let your Coordinator know in advance and we can make accommodations.)

    At the physical exam, you will be asked to provide blood samples. We run a number of infectious disease tests. And we often send samples to the patient's medical team so that they can also run tests.

    Once all of your medical and blood test results are available, physicians will review everything and make sure that there is no unusual risk for your donation (either to you or the patient). If everything is okay, you will be given clearance to donate.

    Why do I have to hurry - and then wait?

    No one has a bone marrow transplant just for fun. This is a risky, expensive, difficult, and time-consuming process for any patient. And then there is the timing: Patients have to be sufficiently sick to need a transplant, but must also be healthy enough to survive the process. Balancing need and resources can be tough, especially when a patient's health is changing day-by-day. We make every effort to keep donors informed, but there are a lot of layers in the process.

    Our program runs a Donor Center; we work with donors and coordinate donations. You actually give your cells at an Apheresis Center (PBSC) or Collection Center (marrow).

    Patients receive treatment at a Transplant Center.

    In between these two sides is the National Marrow Donor Program. It acts like a porous barrier, transmitting some information between the two sides. This allows patients and donors to remain anonymous from each other. It also slows down some processes because of all of the back-and-forth.

    Donation usually takes about 30 hours total, but this is stretched out over several days. How to handle leave?

    Civilian Employers

    Our Coordinators are happy to provide education to your employer, but we cannot force anyone to provide paid leave.

    Leave policy for civilian employees vary greatly depending upon your employer and state of residence. Some states have laws requiring employers to provide paid donor leave. Be The Match keeps a list of current laws, as well as employers that provide donor leave. If you anticipate problems with your employer, speak with your Coordinator.

    Military Commands

    If you provide your CO's contact information, we will send a memo requesting time off. We have copies of the public law, directives from the Assistant Secretary of Defense outlining our program, and DoD instructions for leave that can accompany this memo. Many COs will happily support bone marrow donation. Some do not. If a Command does not support donation, there is nothing we can do to force a change of heart and we must abide this decision.

    The national program covers all donation-related medical and travel expenses.

    If you need to travel for your physical exam or donation, your Coordinator will work with you to make necessary arrangements. This can include child care, pet care, or other non-standard accommodations. We typically cover airfare or mileage (if you choose to drive), hotel expenses, and a set per diem for meals. A companion is typically only covered for your donation trip. We do not cover luxury travel (ex: first class seats), sightseeing expenses, alcohol, and incidental expenses (ex: internet, movies). Speak with your Coordinator and read this resource before traveling.

    Donation itself takes place by one of two methods:

    Traditional Bone Marrow Donation

    This is probably what you think of when you imagine "bone marrow donation". You will be admitted to a hospital and given anesthesia. While face-down, a strong needle is used to extract the requested marrow cells directly from your hips. You will have tiny punctures at your iliac crest (near the back pocket of your jeans). The procedure usually takes less than two hours. If you provided an autologous unit of blood previously, it will be returned to you before you are discharged. You generally spend one night in the hospital. Should you be released the same day, you will not be allowed to drive yourself. Risks include allergic reaction to anesthesia, bleeding, mechanical injury, and infection at IV or surgical sites.

    Which one is used depends upon:

     

    1. Patient needs. While the cells removed are essentially the same, there are slight differences that make a big difference to the patient and his/her treatment. The patient's disease type, age, and health status may all be considered by doctors before a particular method is requested.

     

    2. Donor safety. Certain health conditions make one method preferable. For example, if you have history of concussions, you would be at increased risk from filgrastim (so, no PBSC). If you have chronic back or hip pain, perhaps marrow donation is not for you. This is why completing your health history exam as honestly as possible is important.

    In either case:

    • You donate no more than 5% of your hematopoietic stem cells (though you give some blood cells too).
    • Patients' reactions to either procedure vary wildly. Some feel lousy, some feel fine. Nearly everyone recovers completely within a month. 
    • Your marrow will replenish in a few weeks.

    Peripheral Blood Stem Cell Donation

    This newer method collects the same marrow cells, but in a completely different way. You will receive five days of injections of filgrastim, which causes your bones to release their marrow cells into your bloodstream. On the 5th day, you will go to an apheresis center, where needles will be placed in your veins. Your blood will run through an apheresis machine, which separates out the desired cells, and returns the rest of your blood to your body. The procedure takes 4-8 hours, during which you are awake but need to be still. You can talk with your companion, eat, or watch movies. Risks include allergic reaction to the filgrastim, infection at any needle insertion point, and rare but serious side-effects of filgrastim.

  • Step 5: Afterwards

    Ok. Cells have been donated. Now what?

    Your cells take a trip.

    You Recover

    Quick caveat: This information is intended to paint a general picture of what to expect after donation. It is not medical advice. Medical centers vary in their discharge instructions. Follow your doctor's directions.

     

    Marrow donors:

    The morning after your donation, take a shower and remove the pressure bandage. It is extremely sticky; some call its removal the worst part of the process. Expect your surgical sites to be sore and stiff; keep them clean and covered (antibiotic ointment and Band-aids). You can (and should) walk a bit and gently move around, but avoid strenuous activity (lifting more than 20 lbs.) or movements (running, squatting), or standing for prolonged periods for at least 2 weeks. Avoid submerging your surgical sites in water for 2 weeks (baths, pools, etc.) While recovering, you may feel very tired. Try to eat a healthy diet with foods high in iron (meat, eggs, dark leafy greens) and get plenty of rest. Recovery can take several weeks.

     

    PBSC donors:

    Filgrastim's side effects (bone pain, headaches) may continue for a week after donation, but many donors feel better in a few days. Continue to avoid aspirin, ibuprofen, NSAIDs, or anything else that interferes with blood clotting for 2 days after donation. For the same reason, avoid shaving or flossing for 24 hours. You may be dizzy or light-headed post-donation; no operating heavy machinery or climbing ladders for 24 hours. Keep your needle sites clean, dry, and covered for 24 hours. You may resume activity within a few days, per your physician's instructions. Rest, eat a healthy diet, and drink plenty of non-alcoholic beverages.

     

    A small percentage of donors do not recover as quickly or completely as the average donor. Specialized or prolonged care for symptoms related to your donation will be covered by the National Marrow Donor Program. After donation, your physician should give you a list of rare but serious side-effects. If you suspect you are having a health event, immediately seek medical attention, and contact your Coordinator.

    Your Patient (Hopefully) Recovers

    As we mentioned before, no one has a bone marrow transplant just for fun. Traditionally, this is a patient's last or only option.

     

    Your patient will have already gone through many of the steps that you went through - blood tests, physical exam, consent forms. Several days before your donation, your patient began his/her preparative regimen, treatment with chemotherapy or radiation. The "prep" destroys the patient's own diseased immune system, to make room for your new, functioning cells. During this prep phase, the patient is very fragile and cannot leave the hospital. If the patient got sick or didn't receive new cells, he/she would likely die.

    As soon as they arrive at the hospital, your donated cells are infused through a central line into the patient.

    Within the first 30 days, we hope to see the new cells settle into the patient's bones and begin to build a new immune system (engraft). The patient may spend months in the hospital, avoiding infection and hoping that their disease is gone. Doctors will also be looking for signs of graft-versus-host-disease, a common but potentially serious side effect of transplant.

    Patients may spend many or all of their first 100 days in the hospital. This is a critical time and not every patient survives. Those that do will be discharged, but with a number of restrictions. Slowly life may return to something that resembles normalcy.

    More Paperwork!

    Reimbursement

    While your medical, airfare, and hotel expenses were likely all pre-paid, you may have had certain out-of-pocket reimburseable expenses. If this was the case, you will need to complete a reimbursement form (available from your Coordinator) and provide original, itemized receipts. Please follow the written instructions carefully. Incorrectly completed forms may result in delayed or decreased reimbursement. Checks will be mailed by the National Marrow Donor Program.

     

    Follow-up Care

    Your Coordinator will contact you following donation to make sure that you returned home safely and are recovering nicely. You will be contacted periodically until you report a full recovery.

     

    Patient Updates

    While many donors are curious about how their patients are doing, Transplant Centers typically only provide patient survivorship information at the 9 month mark. Feel free to call us at this point and we will share what we know.

     

    Donor-Patient Contact

    Your Coordinator should counsel you on what you may expect with regards to donor-patient contact. Remember: (a) You do not have to have any contact with your patient. (b) Your patient may not want to have contact with you. (c) Rules regarding contact vary depending upon where your patient lives. Some international registries never allow donor-patient contact.

    For U.S. patients: Anonymous contact is allowable between donor and patient during the first year following transplant. So, you can send a letter or email message, but it cannot include any personal or identifying information. Similarly, a patient may send a note, but it must be sent through NMDP, which will screen it for prohibited information. After the one year mark, if both patient and donor wish, they may complete release forms and exchange contact information. Once this occurs, we have no control over the frequency or quality of contact.

  • Take It Full Circle

    Our organization relies heavily on volunteers to help us grow the registry. Help us help others!

    Do you work with members of the Department of Defense? Then you are perfectly positioned to help.

    Small, easy steps such as putting up a poster or sending out an email raises awareness about the bone marrow program and the need for new registrants.

    Willing to do more? Host a drive or open a walk-in registration site! We provide all of the information and supplies you need, free of charge.

    To learn more, fill out the form below or contact our Recruitment department at [email protected]

    or 1-800-627-7693.

    Get in Touch with Eddy!