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Frequently Asked Questions

 

 

 

Q: What is Leukemia?

A: Each year, more than 30,000 children and adults in the U.S. are diagnosed with diseases such as leukemia and aplastic anemia for which a hematopoietic (blood forming) stem cell transplant can be a cure.

Diseases like leukemia and aplastic anemia attack a person's bone marrow, eliminating its ability to create healthy blood cells. Stem cells are immature cells that are located in the bone marrow and are also released in small numbers into circulating blood. These special cells can develop into red blood cells, white blood cells or platelets in the blood stream.

Q: How is a donor found?

A: 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 individuals who have agreed to donate stem cells. The computer crosschecks its records to see if there is a match for the patient. The Registry currently contains approximately four million potential donors.

Q: Can I get tested for a specific patient (i.e., family member or friend)?

A: 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.

Q: How can I verify that I am on the Registry?

A: Each year, the NMDP and its Network of Donor Centers mail out an annual publication, The Marrow Messenger, to all potential stem cell volunteers registered through the NMDP. If you received the publication, you are on The NMDP Registry. If you have never received The Marrow Messenger, but have moved since you originally joined the Registry, you may still be listed but would need to contact the Hawaii Bone Marrow Donor Registry toll-free at 877-443-6667 or the NMDP Donor Center where you were tested in order to verify this.

Q: What are the risks for the stem cell donor?

A: 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 blood stem 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.

Q: Describe the stem cell donation process.

A: 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 blood stem cells, the donor receives one injection of Filgrastim each day for four to five days. Filgrastim is a drug that increases the number of stem cells released from the bone marrow into the blood stream. The stem 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 stem cells. The remaining blood, minus the stem cells, is returned through a sterile needle placed in a vein in the other arm.

Q: What is the difference between marrow and PBSC (peripheral blood stem cell) donation?

A: 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 stem cells from the bone marrow.

Q: How will I know whether I'll be asked to donate marrow or PBSC?

A: 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.

Q: Which method of donation is easier for the donor?

A: It is not so much a matter of one or the other being easier. Each method has its own discomforts and side effects. One individual may feel marrow donation is the easier procedure, while another may feel that PBSC donation would be easier.

Q: Does marrow donation hurt?

A: Following the procedure, donors can expect to feel some soreness in the lower back for a few days or longer. Some donors have also reported feeling fatigued and having some difficulty walking.

Q: Does PBSC donation hurt?

A: 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 stem cell collection is completed. During the apheresis procedure some donors experience a tingling feeling from the anticoagulant used to keep the cells from clotting.


For more Frequently Asked Questions, visit the National Marrow Donor Program website at www.marrow.org or call the Hawaii Bone Marrow Donor Registry at St. Francis Medical Center at (808) 547-6154.

 

How to Join
  MEDICAL INFORMATION

YOU MUST BE 18-60 YEARS OF AGE:
A person of any race, ethnicity or gender who is between the ages of 18 to 60 years old and who meets donation guidelines can become a volunteer marrow donor.

API DONORS:
Donors of Asian, Hawaiian, Pacific Islander or mixed ancestry are especially needed for the Hawaii and National registries.

GOOD GENERAL HEALTH:
Health guidelines were established to protect the health of the volunteer donor as well as the transplant recipient. When you join the Registry, you will be asked to fill out a registration form to help determine whether you meet the eligibility criteria of being a donor. (See medical conditions chart for general health and weight guidelines)

REGISTRATION FORM: Donor Registration and Consent

When you are sure of your decision, the first step is to attend a recruitment drive or to contact The Hawaii Bone Marrow Donor Registry where you will:

  • Be given “donor information”
  • Complete a registration form, including a health questionnaire
  • Sign a consent form to have your tissue type listed on the Registry until your 61st birthday
  • Provide a small blood sample for tissue typing
  • Provide a sample of buccal (inner lining of the mouth) swab sample. Blood sample no longer needed.
Your tissue type will be compared to the tissue types of thousands of patients around the world who are searching for a matching donor. 

Registration by mail is now available. Please call TODAY 547-6154 or toll-free at 1-877-HI-DONOR (443-6667) to request a kit.

Source: St. Francis Healthcare System of Hawaii

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