You have been identified as a possible donor for a patient who seeks a marrow or peripheral blood stem cell (PBSC) transplant. When you joined the Be The Match Registry, you agreed to consider donating cells from your marrow or blood to possibly help any patient in the world who may benefit from a transplant. You gave a blood or tissue sample when you joined. That sample was tested to determine your tissue type, and the test results were listed on the Be The Match Registry
Now, a doctor searching the registry has identified you as a possible match for a patient who seeks a transplant.
If you agree to donate, blood-forming cells collected from your marrow or bloodstream (which are PBSCs) will be transplanted into the patient to replace his or her marrow. A marrow or PBSC transplant can often help patients with leukemia, lymphoma, sickle cell disease and other life-threatening diseases live longer, healthier lives.
A transplant requires carefully matching the tissue type of the donor and the patient. Because tissue type is inherited, a patient’s brother or sister usually has the best chance of matching. If a match cannot be found within the patient’s family, the search is started to find an unrelated donor, like you. For more information about becoming a donor, reference pages 9-19 of the donor work up book.
Peripheral blood stem cell (PBSC) donation is one way to collect blood-forming cells for transplant. The same blood-forming cells (sometimes called blood stem cells) found in marrow are also found in the circulating (peripheral) blood. The donation will take place in a hospital or apheresis center with experience collecting PBSCs for Be The Match.
In order to be able to donate enough PBSCs for a transplant, more of the cells need to be moved out of the marrow and into the bloodstream. One proven way to move cells from the marrow into the bloodstream is by taking filgrastim (Neupogen®), a drug given by injection each day for five days before the PBSC donation. Filgrastim is commonly used to treat cancer patients to boost their blood cell counts.
Donating PBSCs is done through a standard process called apheresis. During apheresis, a needle will be placed into each of your arms.
Blood will be removed from a vein in one arm and passed through tubing into a blood cell separator machine. The blood is spun at high speed and the cells separate into layers.
The machine collects PBSCs, some platelets and some white blood cells. Plasma and red blood cells are returned to your body through the other arm while the PBSC are put into a collection bag. All the tubing used in the machine is sterile and used only once for your donation.
For more information about PBSC Donation, reference pages 23-29 of the donor work up book.
Marrow donation is a surgical procedure that takes place in a hospital operating room. You will be given either general or regional anesthesia to block the pain. Typically, the hospital stay is from early morning to late afternoon, or occasionally overnight for observation. The donation will take place in a hospital that is experienced and participates in marrow collections for Be The Match.
In most cases, the hospital will schedule a same-day admission and discharge for your marrow donation procedure. Some hospitals routinely plan for an overnight hospital stay. Your donor center representative will guide you through the process and will be available the day of your marrow donation. If you have a specific concern about your hospital stay—your symptoms, your comfort, your privacy or some other issue—tell the hospital staff. They want to make your marrow donation procedure as comfortable as possible. Also, please be aware that delays may occur.
During the marrow donation, you will be lying on your stomach. While the donation varies slightly from hospital to hospital, generally, the doctors make several small incisions through the skin over the back of the pelvic bones.
The incisions are less than one-fourth inch long and do not require stitches. The doctor will insert a special hollow needle through these incisions over the rear of the pelvic bone. A syringe is attached to the needle to draw out the marrow.
The amount of marrow donated is only a fraction of the body’s total marrow. The amount donated does not weaken your own immune system. The marrow naturally replaces itself within a few weeks.
For more information about Marrow Donation, reference pages 33-38 of the donor work up book.
You may experience headaches, or bone or muscle aches for several days before donation. These are side effects of the filgrastim injections that you will receive to increase the number of PBSCs in your bloodstream. These side effects disappear shortly after the donation. It is also common to experience some pain and bruising at the injection sites.
“They told me I was going to get some shots, and I got the shots over five days. I don’t like needles, so it wasn’t very fun— but it also wasn’t so bad. And the worst of it, for me, was that I had some aches and pains some nights. Other than that, I got to sit down for five hours during the donation and just relax. It was something I like to do anyway."
—Derek, PBSC donor
It is normal to experience some pain, bruising and stiffness during the first week after donation. You may feel more tired than usual and run a low-grade fever the first week. Some clear or pink fluid drainage can be expected. It is common to experience small, hard lumps in the incision area. These lumps could last a few weeks.
For more information about what happens after donation, reference pages 41-52 of the donor work up book.
“I was under anesthesia and not awake during the procedure. I was in the hospital at 5 a.m. and out by 11 a.m. For about a week and a half I was a little sore, like I had fallen down. And time-wise, it was nothing—especially compared to other things I’ve done, like being on the high school swim team with the grueling training before and after school.”
—Samantha, marrow donor
Step 1: Patient's doctor asks for a preliminary search of the registry
In a preliminary search, the patient’s human leukocyte antigen (HLA) tissue type is compared to the HLA types of millions of Be The Match Registry members like you. HLA are proteins—or markers—found on most cells in the body. The immune system uses these markers to recognize which cells belong in the body and which do not. A close HLA match between patient and donor is the most important factor in selecting a donor for a patient.
Step 2: Patient's doctor reviews the preliminary search results
The doctor receives a list of potential donors and cord blood units that may be a match for the patient. These early results may show many or few potential matches. Further testing is needed to find out which, if any, of the potential donors or cord blood units are the closest possible match for the patient.
Step 3: If the patient is not already at a transplant center, his or her doctor will refer the patient to one
At the transplant center, the transplant team will evaluate the patient’s health, disease stage and other factors to decide if transplant is a good treatment option for the patient. Many patients have significant travel to their transplant center due to the need for specialized transplant care. Some patients and their caregivers even need to relocate for the duration of their transplant so they are closer to their transplant center.
Step 4: Patient’s transplant center asks for additional testing of one or more potential donors
Further testing is needed to find out whether potential donors or cord blood units listed on the preliminary search results are suitable matches for the patient. A transplant center may test several potential donors or cord blood units to find the closest match for the patient. If a potential donor appears to be a good match, he or she must be contacted to be sure he or she is healthy, willing and able to donate.
Step 5: Transplant doctor selects a suitable donor
You are at this step. The transplant doctor has selected you as a potential donor for the patient. If you agree to donate, you will undergo tests to ensure that you do not have an infection or disease that could be passed on to the patient through the transplant. The tests also make sure donating will not be too risky for you.
For more information about the patient experience, reference pages 55-61 of the donor work up book.
Step up to save a life
When you joined the Be The Match Registry®, operated by the National Marrow Donor Program®, you learned that one day you might be called to donate to a patient who could benefit from a transplant.
We deeply appreciate the time and effort you have already given to Be The Match, and thank you for considering becoming a marrow or peripheral blood stem cell, PBSC, donor.
Becoming a donor is a serious commitment. It’s important to understand what’s involved, so you can make an informed decision about whether or not you will donate. Visit the tabs above to learn more or download the full You’re a Match: A Donor’s Online Guide to Donation.
Your donor center representative will also work with you to answer your questions, but you will be the one to make the final decision about donating. You may agree to more testing to get ready to donate, or you can say you prefer not to donate at this time.
Thank you again for the time and effort you have already given to Be The Match and for considering becoming a donor.