Donor Questions & Answers
Take part in helping to save a life: Become a volunteer donor at the third annual Channel 3 Marrow Donor Drive on Friday, Nov. 17, from 11 a.m. to 6 p.m.
First, to learn more about the process, we have answers to some of the most frequently asked questions.
- What is a marrow or blood cell transplant?
- How does a person's race or ethnicity affect matching?
- Does donating hurt? What are the side effects?
- What is the marrow or blood cell donation process?
- What are the risks for the marrow or peripheral (circulating) blood cell donor?
- What is the difference between marrow and PBSC (peripheral (circulating) blood cell) donation?
- What are the risks of transplantation for the patient?
- How much of a donor's time does the donation process take?
- Where is the marrow donation done?
- How does a patient receive a transplant?
- How is a donor found?
- How are patients matched with donors?
- What are the chances of finding a match?
- What happens if a match is found?
- Can someone who is identified as a potential donor match decline to donate?
- Do donors and recipients ever meet?
- What happens if the patient can't get a transplant?
- How many transplants have been done, and what is the success rate?
- What is filgrastim?
- Why is PBSC donation considered "investigational"?
- What are the risks of PBSC donation?
- Does PBSC donation hurt?
- Where do I go to donate PBSC? How long will it take?
- How will I know whether I'll be asked to donate marrow or PBSC?
- What if the donor has medical complications?
- Who pays for the donation procedure? How much does it cost?
- Why do you need more donors when there are already so many on the Registry?
- Can I get tested for a specific patient (i.e., family member or friend)?
- Why does a person have to be 18 to be a donor? Can't my parents sign the consent form for me?
- If I'm over 60, why can't I be a donor?
What is a marrow or blood cell transplant?
A marrow or blood cell transplant is a potentially life-saving treatment for patients with leukemia, lymphoma, and other blood diseases. A transplant replaces a patient's unhealthy blood cells with healthy blood-forming cells from a volunteer donor. Patients who do not have a suitably matching donor in their family may search the NMDP donor Registry for a donor. The three sources of blood-forming cells are marrow, blood-forming cells collected from the blood (called a PBSC donation) and umbilical cord blood.
How does a person's race or ethnicity affect matching?
Because tissue type is inherited, patients are most likely to match someone of their same race and ethnicity. There is a special need to recruit more donors who identify themselves as: Black or African American, American Indian or Alaska Native, Asian, Hawaiian or Other Pacific Islander, Hispanic or Latino.
Does donating hurt? What are the side effects?
Marrow donors can expect to feel some soreness in their lower back for a few days or longer. Donors also have reported feeling tired and having some difficulty walking. Most donors are back to their usual routine in a few days. Some may take two to three weeks before they feel completely recovered.
PBSC donors report varying symptoms including headache, bone or muscle pain, nausea, insomnia and fatigue while receiving injections of filgrastim. These effects disappear shortly after collection. During the collection, donors may experience a tingling feeling or chills. These effects go away shortly after donating. When asked about their discomfort, most donors are quick to point out that it was worth it to help save a life, and they would be willing to do it again.
What is the marrow or blood cell donation process?
When you donate marrow, it is removed with a surgical needle from the back of your pelvic bone. All marrow donors are given either general or regional anesthesia. Usually, four to eight tiny incisions are made in the pelvic area. These incisions are so small that stitches are not necessary. The procedure lasts between 45 and 90 minutes. Marrow is constantly regenerating itself and is replaced within several weeks.
For a donation of peripheral (circulating) blood cells, the donor receives one injection of Filgrastim each day for four to five days. Filgrastim is a drug that increases the number of blood-forming cells released from the bone marrow into the blood stream. The blood-forming cells are collected from the blood stream through a process called apheresis. During apheresis, which is done at a blood center or a hospital, your blood is removed through a sterile needle placed in a vein in one arm and passed through an apheresis machine that separates out the blood-forming cells. The remaining blood, minus the blood-forming cells, is returned through a sterile needle placed in a vein in the other arm.
What are the risks for the marrow or peripheral (circulating) blood cell donor?
Bone marrow donation is a surgical procedure. There is minimal risk involved. Serious complications are rare but could include anesthesia reactions, infection, transfusion reactions, or injury at the needle insertion sites. With a marrow donation, donors can expect to feel some soreness in the lower back for several days or longer following the donation.
Peripheral (circulating) blood cell (PBSC) donors may experience bone pain, muscle pain, nausea, insomnia and fatigue while receiving injections of Filgrastim. Bone pain and headaches have been the two most frequently reported symptoms. These effects disappear promptly when the collection is complete. During the apheresis procedure some donors experience a tingling feeling from the anticoagulant used to keep the cells from clotting. Others experience chills. These effects are relieved after the donation is complete.
The safety and well being of donors is the first concern of the NMDP. While neither donation procedure has any effect on the reproductive ability of women or men, pregnant women are prohibited from donating marrow or PBSC. The marrow donation procedure requires anesthesia, which could affect a developing fetus. The PBSC procedure requires injections of Filgrastim, which may also be associated with risk to the developing fetus. For this reason, women are asked to take a pregnancy test prior to receiving anesthesia or Filgrastim.
What is the difference between marrow and PBSC (peripheral (circulating) blood cell) donation?
Unlike marrow donation, a PBSC donation requires no anesthesia. Marrow donors may experience pain and residual stiffness up to a few weeks after the procedure. PBSC donors experience symptoms such as bone pain and muscle pain prior to the donation while receiving Filgrastim, the drug used to increase the release of blood-forming cells from the bone marrow.
What are the risks of transplantation for the patient?
A transplant has serious risks. Some patients suffer from life-threatening problems as a result of their transplant. These problems can include serious infections and graft-versus-host disease (when the donor's cells attack the patient's body). On the other hand, a transplant may be a patient's best hope for a cure or a longer life. A patient and his or her doctor look carefully at possible benefits and risks before deciding a transplant is the best treatment choice.
How much of a donor's time does the donation process take?
Becoming a donor requires a time commitment. Before the actual donation, there are several steps involved to make sure a person is the best donor for the patient. These steps include an information session and appointments for additional blood tests and a physical exam.
On average, the process can take 40 to 46 hours over four to eight weeks. Marrow and PBSC donation require about the same time commitment. However, the procedures involve different activities that require varying amounts of time. For example, with marrow donation, the donor has to donate some blood ahead of time. With PBSC donation, the donor receives a daily shot of filgrastim for five days before donating cells.
Where is the marrow donation done?
The NMDP works with more than 100 medical centers nationwide. Usually, a donor doesn't have to go far from home for the procedure. The donor usually enters the hospital the morning of the procedure and sometimes spends the night there. Afterward, the time it takes to recuperate varies from person to person. Most donors are back to their usual routine within a few days. Some may take two or three weeks before they feel completely recovered.
How does a patient receive a transplant?
After a patient undergoes chemotherapy and/or radiation treatment to destroy their diseased marrow, the healthy donor cells are given directly into the patient's bloodstream. The cells travel to the marrow, where they begin to function and multiply.
How is a donor found?
The first place physicians look for a match is within the patient's immediate family. Regardless of race or ethnicity, each person has a unique tissue type inherited from his or her parents, which is why the chances of finding a match are best among family members. The chances of two siblings matching each other are one in four.
If no related donor can be found, the search for an unrelated donor begins. To help match patients and unrelated donors, the NMDP maintains a computerized Registry that records the tissue type of potential volunteer donors. The computer crosschecks its records to see if there is a match for the patient. The Registry currently contains approximately 5.5 million potential donors and 40,000 cord blood units.
How are patients matched with donors?
Proteins called antigens are found on the surface of the white blood cells and other body tissue. Particular antigens, named HLA-A, HLA-B and HLA-DR are essential to the success of marrow and cord blood transplants (also called BMT). These antigens are used to "match" a patient with a donor. When looking for a match it's important to remember that people of the same race and ethnic groups are more likely to match each other.
Blood or cell samples from adult donors or cord blood units are tested, and the tissue or cell type is added to the NMDP Registry. Doctors can search this Registry when they need to find a donor whose tissue type matches their patient's.
What are the chances of finding a match?
Approximately 80 percent of all patients identify at least one potential match on their preliminary search. This number has improved significantly (in 1991, it was 41 percent) because of increased recruitment efforts to add racial and ethnic diversity to the Registry. Remember, however, that not all of the 80 percent of patients who identify an identical donor at the preliminary search will necessarily go on to the transplant stage. Similarly, the 20 percent who do not immediately find a match may subsequently locate one or else receive a transplant from a donor who is less than a complete match.
What happens if a match is found?
Once the initial search identifies a potential match, the donor is called and asked to come in to the Donor Center for further testing. If the tests show the donor's tissue type is suitably matched with the patient's, the donor will be given a physical examination and a full explanation of the donation processes. After reviewing all the information, the donor is asked to sign an "Intent to Donate" or "Consent" form. At this point, the donor must be absolutely certain about their decision to donate, since the patient will begin to undergo treatment to prepare for the transplant.
Can someone who is identified as a potential donor match decline to donate?
Sometimes a potential donor who is successfully matched with a patient needing a transplant may decide not to go forward with the procedure. There are many reasons for saying no, including illness, amount of time involved, the risk, or even fear of the donation process. As a volunteer, the donor is under no form of legal obligation. Individual decisions are always respected.
However, because a late decision not to donate can be life-threatening to the patient, the significance of this decision is explained to the donor right from the start. A last minute change of mind may be fatal to the patient awaiting the transplant. Many people contacted to be marrow or PBSC cell donors experience some hesitation, which is perfectly natural. Donating marrow or PBSC is a serious commitment. But most decide to go ahead with the procedure once they balance all the facts and consider what their decision will mean to themselves and the recipient.
Do donors and recipients ever meet?
The NMDP follows strict confidentiality standards to protect the privacy of donors and patients. According to these standards, a donor and patient cannot learn each other's identities for at least the first year after transplant. Some centers do not ever allow a donor and patient to learn each other's identities.
A donor may be told the patient's age, gender and diagnosis -- but not a name, location or any other identifying information. After the transplant, some transplant centers provide updates on the patient's health. Others do not. Some centers allow a donor and patient to send cards and letters through the transplant center and donor center coordinators, who will check the letters to be sure no identifying details are shared. These rules vary from center to center. After one year, many centers allow a donor and patient to meet if they both sign release forms. Some centers do not allow contact between the donor and patient at any time.
What happens if the patient can't get a transplant?
In most cases, patients who don't get the transplant they need will die. Certain treatments may prolong a patient's life, but in most cases these treatments will not cure the disease.
How many transplants have been done, and what is the success rate?
On average, more than 220 patients receive transplants through the NMDP each month. Since it began operations in 1987, the NMDP has facilitated more than 25,000 marrow and cord blood transplants for patients who do not have matching donors in their families. Success rates for transplants depend on many things, such as:
- The disease being treated
- The stage of the disease
- The patient's age and general health
- How well the donor's tissue type matches the patient
Other things can also make a difference. You can find transplant success rates for specific diseases through the links in Learning More about Your Disease.
What is filgrastim?
Filgrastim has been used for more than 10 years to increase white cell production in patients who need white blood cells to fight infections. It is similar to a substance produced naturally in the human body. For several years, it has been given to healthy donors to allow them to donate PBSC for transplants to relatives. The NMDP's investigational plan for the use of filgrastim in unrelated healthy donors, for the purpose of providing an alternative cell source, has been accepted by the Food and Drug Administration (FDA) and has been defined as an "investigational study."
Why is PBSC donation considered "investigational"?
The NMDP is investigating whether blood-forming cells from the peripheral blood can be used as effectively as blood-forming cells from bone marrow for unrelated donor transplantation. Prior to marketing or investigating a new use of a drug, the FDA requires certain steps to be followed for all clinical investigations. The NMDP has submitted all required information to the FDA, including a research protocol, and a description of the administration of filgrastim in healthy donors. The NMDP's investigational plan for the use of filgrastim in healthy donors, for the purpose of providing an alternative cell source for transplantation, has been accepted by the FDA and is now considered an "investigational study."
What are the risks of PBSC donation?
The safety and well-being of donors and recipients is the first concern of the NMDP. A study of approximately 20,000 apheresis donations concluded that the apheresis collection procedure has a very low rate of adverse effects (Transfusion, vol. 38, October 1998).
Does PBSC donation hurt?
You may experience bone pain, muscle pain, nausea, insomnia and fatigue while receiving filgrastim. Bone pain and headaches have been the most frequently reported symptoms. These symptoms disappear promptly after the blood-forming cell collection is completed. During the apheresis procedure some donors experience a tingling feeling from the anticoagulant used to keep the cells from clotting.
Where do I go to donate PBSC? How long will it take?
The PBSC collection site varies by Donor Center. Some centers perform the collection at the blood center; others use a local hospital. As with marrow donation, several factors are involved, such as the quantity of cells that need to be collected. This is based on the patient's weight. Some donors will be asked for one PBSC collection, others will be asked for two. Generally, each collection procedure takes three to five hours.
How will I know whether I'll be asked to donate marrow or PBSC?
If it has been determined you are a complete match for the patient, you will be told which method the patient's physician requests prior to your preparation to donate. You will receive further education about bone marrow and PBSC donation. You will then be asked to sign an "Intent to Donate" or "Consent" form. At this point, the donor needs to be absolutely certain about making the donation because the patient will begin to undergo treatment to prepare for the transplant.
What if the donor has medical complications?
Every donor is covered by a donor life, disability and medical insurance policy.
Who pays for the donation procedure? How much does it cost?
All medical costs for the donation procedure are covered by the patient or 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.
Why do you need more donors when there are already so many on the Registry?
The NMDP Registry includes more than 6 million volunteer adult donors and more than 50,000 cord blood units. Patients searching the NMDP Registry also have access to an additional 4 million volunteer donors through arrangements with international cooperative registries. However, some patients are unable to find a suitable match because their tissue traits are uncommon. Some tissue traits are more likely to be found among people of a particular racial or ethnic heritage. That is why a pressing need remains for more American Indian and Alaska Native, Asian, Black and African American, Hispanic and Latino, Native Hawaiian and Other Pacific Islander, and multiple-race donors.
Can I get tested for a specific patient (i.e., family member or friend)?
The NMDP maintains a Registry of unrelated potential donors willing to help any patient that they might match. Individuals can be tested through the NMDP and ask for a copy of their results at the time of testing. If they are interested in getting tested only for a specific friend or family member, they will need to have the blood test done privately. For private testing, contact the Transplant Center or the patient's transplant physician for suggestions.
Why does a person have to be 18 to be a donor? Can't my parents sign the consent form for me?
NMDP standards require that volunteer marrow donors must be between the ages of 18 and 60. This is standard medical practice. The reason an individual must be 18 to donate marrow is because the donation is done through a surgical procedure and the person undergoing the procedure must be able to give his or her informed consent. A guardian or parent is not able to sign a release or give consent because unrelated marrow donation is a voluntary procedure and is not beneficial or lifesaving to the donor. Because the patient's physician may request either a marrow donation procedure or a blood-cell donation, a volunteer must be medically eligible for both procedures.
If I'm over 60, why can't I be a donor?
The NMDP recognizes that chronological age does not necessarily correlate to physiological age. However, the NMDP must rely on chronological age when determining eligibility. In addition, with age comes a small increase in the risk of side effects from anesthesia. And recent NMDP studies reveal that patients receiving marrow or blood cell transplants from older donors have a somewhat poorer survival rate. These age guidelines are meant to protect the safety of the donor and provide the best possible cure for the patient. They are not meant to discriminate.
Source: National Marrow Donor Program
