Donate Bone Marrow

Saving lives is easier than ever; you don't have to rescue someone who's fallen through ice, do CPR, or push someone out of the way of a moving bus. By offering to donate bone marrow, you can save lives threatened by cancers and blood diseases, such as leukemia, lymphoma and sickle cell disease. In the US alone, 6,000 people need a bone marrow transplant on any given day. This article will provide you with all the information you need on donating bone marrow.

Steps

Bone Marrow Donation Basics

1. Understand why people donate bone marrow. Bone marrow is a spongy material that is found inside major bones, such as the hipbone. The stem cells contained in the bone marrow are the building blocks of the blood: The red blood cells - which carry oxygen; the white cells - which fight infection; and the platelets - which stop bleeding, are all produced by the stem cells and are released into the blood stream via the veins and the thin tissue surrounding the bone.
   • However, in people with serious blood cancers such as leukemia, lymphoma and sickle cell anemia, these vital stem cells are either diseased or are not produced at all. In this situation, a bone marrow transplant is the best and sometimes only way to treat and potentially cure the disease.
   • Around 10,000 people in the U.S are diagnosed each year with diseases which require bone marrow transplants. Seven out of ten people who require a bone marrow transplant do not have a matching donor in their family, and therefore rely on the registry of bone marrow donors to find a match.
   • The process for matching a patient with a donor involves comparing human leukocyte antigen (HLA) types in order to find a match. People with shared ancestry are more likely to possess matching HLA types, which is why it's extra important for people with certain racial or ethnic backgrounds to become donors.
   • The racial and ethnic backgrounds with the greatest need for donations include African American or Black, South Asian or Pacific Islanders, American Indian and Alaska natives, Hispanic or Latinos and people of mixed race.
2. Know the difference between donating PBSC and donating bone marrow. There are two main types of bone marrow donation. The first is an actual bone marrow donation, which involves the removal of bone marrow from the back of the pelvic bone. This procedure is usually done under general anesthetic. PBSC (which stands for peripheral blood stem cell) donation is the more common method used nowadays, and involves filtering stem cells directly from the blood. It is these blood stem cells, rather than the bone marrow itself, which are necessary in the treatment of blood cancers and other diseases.
   • In bone marrow donations, bone marrow containing the blood stem cells necessary for the patient to start producing their own healthy blood cells is taken from the pelvic bone and given to the patient. With PBSC, the stem cells are filtered directly from circulating (peripheral) blood. Even though this procedure does not actually involve the use of bone marrow, it is still commonly referred to as a bone marrow donation.
   • When you join a bone marrow donation registry, you are agreeing to donate using whichever method the patient's doctor deems appropriate. You do not get to choose which method of donation you would prefer.
3. Find out about the costs and risks associated with donating bone marrow. In terms of costs, the expense of making a blood marrow donation is completely covered by either the National Marrow Donor Program, or the patient's medical insurance. This includes travel costs and certain non-medical expenses. The only cost that is not covered is any time taken off work to attend health exams and information sessions or during the recovery period. On the other hand, a donor will never be paid to donate a bone marrow either.
   • In terms of risk, the dangers involved in the bone marrow donation process are minimal. In fact, over 99% of donors make a full recovery after the procedure.
   • With blood marrow donation, the only major risk involves the use of anesthesia during the procedure itself. In very rare cases, anesthesia can lead to stroke, heart attack and death. After the procedure you will experience some pain in the location from which the blood marrow was taken, which may make walking difficult. You may also feel tired and weak. These symptoms should pass after 1 to 7 days.
   • With PBSC donation, the risks are minimal. The procedure itself, which involves filtering your blood through a machine, is not dangerous at all. However, the medication you receive before and during the procedure may cause symptoms such as nausea, fatigue, headaches, muscle pain, chills or cramping, but these should go away as soon as the donation is complete.
4. Understand that you are making a commitment. Before you begin the donation process or sign up to the bone marrow registry, it is important that you research the entire process thoroughly and understand the implications of your actions. Receiving a bone marrow transplant may be a patient's only chance of survival -- it is literally a matter of life or death. Therefore, it is not something you should undertake lightly. Make sure that you are willing to to carry through with the donation when the time comes, regardless of whether the procedure is surgical (bone marrow) or non-surgical (PBSC).
   • The chances of you being called upon to make a donation are hard to predict, as it will depend on your individual DNA and whether it is a match for a patient in need. If you possess a common tissue type, there may be less need for your donation, as there will be multiple matches available. #*If you have a less common tissue type one of two things might happen: you may never be called upon, or you may be the only available match for a given patient.
   • According to Be The Match registry, about 1 in every 540 registered donors will be called upon to make a donation -- of either bone marrow or blood stem cells -- to a patient.
   • Although it is possible to back out of a donation once you have signed up for the registry, you must consider the fact that you may be the only person on the registry who provides an exact match for a patient in need, and refusing to go through with the procedure may seriously affect or delay their chances of recovery. In going through with the donation, you could literally be saving someone's life.
   • If you do need to back out of the donation, be sure to notify the registry right away, so they can continue their search for another donor as quickly as possible.
5. Consider some alternatives. If you are not in a position to donate bone marrow yourself, due to ineligibility or other factors, remember that there are other things you can do to help patients in need. Monetary donations are always welcome. These donations can help to cover uninsured patients' medical bills and other expenses, help the registry to find and vet new donors, or help to fund medical research.
   • It is possible to make a direct donation to the registry (100% of which goes to helping patients in one of the ways outlined above), to make a legacy gift by including the registry in your estate planning, to organize charitable payroll deductions at your workplace, or to raise money by hosting a fundraising or awareness event. Find out more at bethematch.org.
   • One other option is to donate your baby's umbilical cord, if you are expecting a child. Along with bone marrow and blood stem cells, the blood in a newborn baby's umbilical cord is a rich source of the stem cells necessary to save the lives of patients (usually small children) suffering from diseases such as leukemia. Cord donation is completely safe for both the mother and baby, as the blood is taken from the cord immediately after birth, tested, then frozen and stored in a cord blood bank. This type of donation is completely free and anonymous.

Registration and Matching Process

1. Make sure you qualify as a donor. Before you register, consider whether you fit the criteria for bone marrow donation. The main criterion is age. People between the ages of 18 and 44 are encouraged to join, as younger people are much less likely to develop complications during or following the donations procedure, while patients who receive donations from younger people have a better chance for long-term survival.
   • Despite this, people between the ages of 44 and 65 are welcome to join the registry, but they will be required to pay a $100 fee and and are much less likely to be called upon to donate. People over the age of 60 are unable to join the registry, as the risks involved for both the donor and the patient are too high.
   • There are also a variety of diseases and conditions which could prevent you from becoming a donor. You will be asked to fill out a health history form and be informed if you meet the organization's health criteria. This is done to protect the health of the donor as well as the patient.
   • Note that in every country the criteria to be a bone marrow donor are slightly different. If you live outside of the U.S. talk to your doctor to find out about bone marrow donation criteria and registration procedures in your country.
2. Join the blood marrow donation registry. If you believe that you meet the above criteria and are committed to donating bone marrow if called upon, you can register with the National Marrow Donor Program. Once you register, you will be asked to undertake a test known as human leukocyte antigen (HLA) typing, which is used to match up patients with potential donors. They will then add your HLA type to a database of potential donors, which doctors can search through to find a match for their patients.
   • If you register with the Donor Program online, you will need to make an appointment with your doctor to give a blood sample, which will then be tested for HLA type. If you register as a marrow donor while donating blood, they will be able to take an extra blood sample for HLA typing. Just be sure to indicate that you wish to join the registry before you donate blood, so that the staff can prepare to take an extra sample.
   • The cost of HLA testing is approximately $100, but if you get chosen as a donor this amount will be reimbursed, as it will be covered by the patient's health insurance. If you register at a blood drive, there may be a sponsor who covers the tissue-typing costs on the day. Whatever you end up paying is tax-deductible.
3. Wait to be contacted as a potential match. Once your HLA results come back and you are entered onto the registry of bone marrow donors, you will need to wait and see if you are contacted by a patient or their doctor as a potential match. As mentioned above, the chances of this happening vary greatly from person to person and are almost impossible to predict.
   • A doctor will match their patient with a potential donor by comparing the proteins in each of your blood cells to see if they are similar. The more similar they are, the better the chance of the patient's body accepting the transplant.
   • If your tissue type matches that of a patient in need of a bone marrow transplant, you will be contacted, so it's important that you keep your contact information up-to-date and respond promptly, whether you intend on going through with the donation or not.
4. Participate in additional tests. Once you have been identified as a potential match for a given patient, you will be required to go through a series of additional tests and interviews to ascertain whether you are a suitable donor. You may need to provide a cheek swab or an additional blood sample, if they do not have a previous sample available.
   • For instance, you will need to be tested for any infectious or genetic diseases which could be passed onto the patient through the donated stem cells. You will also need to provide a detailed family history and undergo a physical examination to ensure that you are fit to go through with the donation procedure.
   • You will also be required to attend an information session, where you will be filled in on the exact nature of the donation procedure and given detailed descriptions of the recovery process and the possible risks and side effects. Any questions or concerns you might have can be addressed during this information session. If you are still willing to go through with the donation, you will be asked to sign a consent form.
   • Be aware that it may take up to 60 days for the doctor to review all of the health information necessary to make a decision regarding the donation. Once he/she has done this, they will be able to inform you which type of donation you will be required to make -- bone marrow or PBSC.

Donation Process

1. Know what to expect when donating PBSC. Before you can donate peripheral blood stem cells, you will need to undergo daily injections of a medication called Filgrastim, in the five days running up to the procedure. This medication draws stem cells from the bone marrow, so you will have more of them circulating in your blood.
   • These injections will be administered at a donor center or medical clinic, where the medical staff will closely monitor your stem cell count, along with your body's reaction to the medication. The last filgrastim injection will be given at the outpatient clinic or donor center on the day of your donation.
   • Donating PBSC involves a procedure know as apheresis. This is when blood is taken from the body using a catheter inserted in one arm and passed through a machine which filters out the stem cells, along with platelets and white blood cells. The remaining blood (consisting mainly o plasma and red blood cells) then flows back into your body through a vein in the other arm.
   • The procedure is completely painless and is similar to donating plasma. However, you may feel tingling around the mouth, a slight cramping of the hands, or experience lightheadedness or numbness, all of which should stop once the procedure is done.
   • PBSC donation will usually require between 2 to 4 sessions, each between 2 to 6 hours each.
2. Know what to expect when donating bone marrow. If you are donating actual bone marrow instead of PBSC, the procedure will be entirely different. There will be no need for the filgrastim injections, as the stem cells can be drawn directly from the bone marrow. Bone marrow donation is a surgical procedure, carried out in the operating room, which requires anesthesia and is therefore completely painless. The entire procedure will only take between 1 and 2 hours.
   • In 96% of cases a general anesthetic will be used, which means you'll be unconscious for the entire procedure. In a small number of cases a local anesthetic will be used, which simply numbs the area the bone marrow is taken from. In this situation, you will be awake throughout the procedure. Your doctor will decide which type of anesthetic is best for you.
   • You will undergo the procedure lying on your stomach. The doctors will insert special, hollow needles into both sides of your pelvic bone, from which they will draw the liquid marrow. The incisions made by the needles will only be about a quarter of an inch in length and will not require stitches.
   • After the procedure you will be taken to a recovery room where you will stay until you regain consciousness. Once you are able to eat, drink and walk (though perhaps with some difficulty) you will be able to leave again. In most situations a bone marrow donor will enter the hospital as an outpatient in the early morning and will be able to leave by late afternoon. However, sometimes donors are required to stay overnight for observation.
3. Understand the recovery process. Once you have completed your donation, it may take a couple of days for you to feel back to your old self again, especially if you underwent surgery. People who donate bone marrow often experience symptoms including headaches, fatigue, muscle pain, back or hip pain, bruising around the incision site and difficulty walking. These symptoms may last as little as a couple of days, or as long as several weeks.
   • Luckily, if you donate PBSC there is very little chance of any side effects following the donation, other than bruising at the needle site, and the recovery time is almost immediate. All of the side effects associated with PBSC donation occur as a result of the filgrastim injections or the blood thinners used during the procedure and will stop immediately after the procedure.
   • If any complications should arise during the donation process, the cost of any medical treatment will be covered by the National Marrow Donor Program. All U.S donors are covered by life, disability and medical insurance policies.
4. Decide whether you want to get in contact with the recipient. After the procedure you may be interested in finding out about the person who received your bone marrow donation. Although patient information is confidential, you will be able to find out the age and gender of the recipient, along with some details about the nature of their condition.
   • Depending on the transplant center, you may be provided with up to three updates on how the patient is doing in the year following the transplant, and in some cases you will be able to communicate anonymously.
   • After one year, it may be possible to meet with the recipient in person, if both you and the recipient consent and the transplant center is willing to facilitate the meeting. However, some transplant centers will not provide you with any updates or allow any communication between you and the recipient.
   • If you wish to find out about the condition of the person who received your bone marrow, it is important to prepare yourself for the possibility that they may not have survived the procedure. In some cases, the process of chemo and radiation therapy patients must undergo before receiving their transplant proves to be too much. In other cases, complications may arise from the transplant itself.
   • Despite the possibility of this outcome, a large number of patients will successfully survive the transplant and may be cured as a result. If this is the case, you will have given another person an amazing gift -- a second chance at life.

Tips

• There is generally a shortage of donors from diverse ethnic backgrounds. A patient will usually match with a person from the same racial or ethnic group. If you belong to a minority in your country, it's especially important that you consider donating bone marrow—it may be needed desperately.
• Find information about bone marrow registries in your country using the following sites:
  • India - http://www.matchpia.org/
  • Canada - http://www.onematch.ca/

Warnings

• If you are contacted as a match and change your mind about donating (which you can do at any time) your decision could be devastating and life-threatening to the patient. Talk to your family and friends about your decision; donating will be easier with their support.
• The procedures may differ depending on the country in which you're donating.
• As with any kind of medical procedure, there are side effects and risks involved. Find out what they are and commit fully to the donation.
• If you are asked to do a Marrow donation and undergo the day surgery, you will be anesthetized to reduce any pain that there may be.

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Sources and Citations

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