DONOR FAQ
1. WHO CAN BE AN UNRELATED MARROW DONOR?
Registrants must be between 18 and 60 years and in general good health. It is very important to understand the donation process before registration. Registered donors must be comfortable with the donation process because they need to be ready to commit to a transplant if they are informed of a match.
2. WHAT IS HLA?
HLA (Human Leukocyte Antigens) are markers on the surface of white blood cells. HLA forms the basis for recognizing and rejecting foreign tissues i.e. it recognizes self from non self. Matching marrow recipients and their donors for their HLA type has been shown to greatly increase the likelihood of a successful transplant. HLA genes are inherited. There are millions of marrow types in the general population, and population genetics has shown that there is a great likelihood of these genes being confined to a race/ethnic group. Thus, the greatest chance of finding a matched marrow donor exists within the patient's own racial group. There is a good possibility for South Asians in finding a match in their own community because they are so diverse in their roots due to cross race. A large number of potential donors must be educated and registered to increase the chances of our patients finding a match.
3. WHAT IS A BUCCAL SWAB AND HOW IS IT USED?
Buccal Swabs are cotton-tipped applicators. They look like cotton swabs used in personal care, but have a cotton tip at only one end. Buccal swabs are used to collect cheek cells from inside the mouth. These cheek cells provide DNA for HLA testing, which is used to determine a match between a donor and patient.
4. WHAT DO I HAVE TO DO TO COLLECT THE SAMPLE?
Swallow your saliva and brush a swab against the inside of your cheek for approximately 10 seconds using the same force used to brush your teeth. Place the swab in the holder provided, place the holder in the envelope and seal it.
5. DOES THIS MEAN I WILL NOT HAVE TO GIVE A BLOOD SAMPLE?
At the time of your registration, you will not have to give a blood sample. But, if you do match a patient, blood will be drawn from your arm for confirmatory testing and infectious disease markers.
6.WHAT HAPPENS WHEN A PERSON AGREES TO BE A POTENTIAL MARROW DONOR?
If you want to be a potential donor a series of questions will be asked about your health to protect you and ensure that it would be safe to donate and also if it would be safe to use your blood for marrow/blood stem cell transplant. You will be required to sign a donor registration and consent form and provide your personal contact information. Testing will be performed on buccal swabs containing cheek cells obtained during a testing session. This information is then put into the National Marrow Donor Program, a nationally recognized registry database. 6000 patients are searching the registry every day for a suitable transplant match. The Registry conducts a computerized search to identify potential donors to match the HLA type of the patient. The potential donor will be contacted and the process will be discussed to his/her satisfaction. A health history is done and determined if he is suitable for donation. Arrangements are then made to obtain additional blood samples to determine if full compatibility exists between donor and patient.
7. IF IT'S A MATCH, WHAT NEXT?
If the confirmatory test determines the compatibility with the patient, the donor goes through a counseling session with an extensive explanation of the donation procedure. A complete physical examination is performed to ensure that the prospective donor is medically eligible to donate. The donor has to make a final commitment to proceed with the donation. Arrangements are made for the actual collection only after the donor has made a final decision to donate and has passed the physical exam.
8. WHAT IS THE PROCEDURE FOR DONATING?
The patient's doctor will determine which source of Blood stem cells is best for the patient. A complete health check is done to ensure there is no danger to either the recipient or the donor.
Marrow donation: Marrow is removed from the bones on one or both sides of the upper hip area using a special syringe. The procedure is performed by an approved collection center, usually under general anesthesia. The entire donation process lasts about one hour. The donor usually spends a night in the hospital for observation. Approximately 3-5% of your marrow is extracted with a syringe and needle. The body naturally replenishes the donated marrow in a couple of weeks.
Peripheral Blood Stem Cell (PBSC): To increase the number of blood forming cells in the blood stream, donors receive daily injections of filgrastim for 4 or 5 consecutive days before the collection. Filgrastim is a blood stem cell growth factor that increases the number of blood stem cells released from your marrow into your blood stream so they can be collected through an aphaeresis procedure. In this process the donor's blood is removed through a sterile needle from the arm and passed through an aphaeresis machine that separates out the stem cells; the remaining blood (minus the blood stem cells) is returned to the donor through a sterile needle in the other arm. Unlike marrow donation, PBSC donation does not require anesthesia. PBSC donors can experience bone pain prior to the donation procedure as a result of
9. WHAT ARE THE RISKS AND SIDE EFFCTS?
More than 25,000 unrelated donor-patient transplants have been performed in the United States . To date there have been no reported long term adverse effects to any donor. Only healthy candidates are accepted and there are existing medical standards approved by the National Heart, Lung and Blood Institute to protect the donor. Donors typically experience mild discomfort and tenderness in the area where the marrow was collected, but this discomfort usually lasts just a few days and does not generally prevent normal activity.
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10. HOW LONG DOES IT TAKE FOR A MARROW DONOR TO RESUME NORMAL ACTIVITIES?
Most donors return to their normal activities, including work, within a day or two. At most, donors have reported feeling slight aches in their backs a week after the procedure.
11. WHO COVERS THE COSTS?
There is no cost to the donor. Medical examinations and hospital expenses are paid by the recipient.
12. WILL I HAVE TO TRAVEL TO THE LOCATION OF THE PATIENT?
The donor will not have to travel to the location of the patient to donate. The procedure will be done at a transplant center closest to the donor.
13. WHO WILL BE TOLD I AM A MATCH?
Confidentiality is very important to SAMAR and the NMDP. Your status as a donor will never be disclosed to anyone including immediate family members as well as the contacts you listed.
14. WHAT SHOULD I DO IF MY FAMILY IS NOT ALLOWING ME TO DONATE?
We understand that family members can greatly influence a donor’s choice of whether or not to donate. Educate your family members about the process and how important the transplant is for a patient.
15. HOW LONG DO I HAVE TO DECIDE WHETHER I WANT TO DONATE?
Time is critical for the patient. If you are unwilling or unable to donate, or you are not sure of your commitment, please tell someone at your donor center as soon as possible. You have the right to decide not to donate at any time. If you change your mind about donating after the workup process has begun, it could cause dangerous delays for the patient. If you change your mind after the patient has begun chemotherapy and/or radiation treatment to kill his or her own marrow, the recipient may die if he or she does not receive the transplant.
16. DOES MY RELIGION ALLOW FOR DONATION?
Donating marrow is a very personal choice and for some religious beliefs play an important role in their decision. The following links provide more information about what different religions say about organ and tissue donation. Transplantand New Jersey Sharing Network
17. CAN I REGISTER IF I AM PREGNANT?
You may register yourself as a marrow donor, however you will be temporarily deferred until you have fully recovered. If you have already registered and were pregnant at the time of registration, please update your information once you have delivered and are fully recovered.
If you are currently pregnant or planning on becoming pregnant, please consider donating your baby's umbilical cord blood after your baby is born.
18. WHEN CAN I MEET THE RECIPIENT?
The confidentiality of both donors and patients is very important to SAMAR and the NMDP. Prior to donation, you will only be told the age and sex of the patient as well as the disease affecting him or her. In most cases, direct contact between donors and patients is allowed one year after transplant if both parties agree. Some transplant centers may allow anonymous communication prior to direct contact. However, some countries do not allow for contact between patient and donor.
19. SHOULD I SIGN UP AND BE TESTED TO BECOME A POTENTIAL MARROW DONOR?
Deciding to become a potential marrow donor requires careful deliberation. We hope we have answered many of your questions. The next step is up to you. Thank you for taking the time to consider this very important step.
20. WHY IS IT IMPORTANT TO DONATE?
Becoming a marrow donor is a serious commitment, but a commitment that can considerably increase the chance of survival for a patient. Without a transplant, survival rates range from 0 to 15 percent. For a matched, unrelated donor transplant, overall survival rates (two to three years after transplant) currently range from 30 to 60 percent.
If you are contacted by SAMAR or the NMDP as a potential match for a patient, we urge you to seriously consider being a marrow/blood cell donor. If you have any reservations, please contact SAMAR at 718-592-0821 or samar@samarinfo.org and we can try to answer your questions and concerns. When you are contacted, you hold the key to that patient's life, and to say no without fully being informed would be a terrible mistake.
We can even put you in touch with previous donors, so you can hear first hand how the process works and the sense of fulfillment that each donor feels. Of course we understand that various extraneous complications might deter you from donating. But, we want you to be well informed before you make a decision. After all, you can provide that patient with hope and a second chance at life.
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