If you have been asked to donate bone marrow or stem cells to a relative, you may experience many emotions. Most related donors are glad to have the opportunity to help a loved one. Despite this, related donors have legitimate concerns about how the donation procedure will affect their own health in both the short and long term.
Human Leukocyte Antigen Test (HLA)
In order to determine whether or not you can be a donor for a loved one, you will need an HLA or human leukocyte antigen test.
- The HLA test looks at genetic markers on your white blood cells.
- If these markers are similar to those on the patient's cells, you may be eligible to serve as a donor.
- You do not need to have the same blood type as the patient in order to be a donor.
The HLA test is simple. In some cases, all that is required is a swab of the cells from your inner cheek. The sample is then sent to a special laboratory for testing.
Some transplant centers ask potential related donors for a blood sample, instead of a cheek swab, so that they can run additional tests to determine compatibility. If you do not live close to the patient's transplant center, you will need to find a local facility that will draw blood for an HLA-test. If you have difficulty finding a lab to do the blood draw, talk to the patient's transplant center or phone BMT InfoNet at 888-597-7674 for help.
Health Issues that May Affect Your Ability to Donate Bone Marrow or Stem Cells
In addition to testing donors for HLA-type, the transplant team will screen you for a number of health-related issues which may impact your ability to serve as a donor. These include a history of:
- severe arthritis, such as rheumatoid arthritis
- severe asthma
- autoimmune disease such as multiple sclerosis, systemic lupus, chronic fatigue syndrome or fibromyalgia
- back, hip, neck or spinal problems or surgeries
- bleeding problems such as hemophilia, aplastic anemia or a history of more than one deep vein blood clot
- breathing problems such as chronic obstructive pulmonary disease, emphysema, sleep apnea or cystic fibrosis
- depression or other mental health problem
- heart disease, heart attacks or a history of heart surgery
- jaundice caused by mononucleosis or cytomegalovirus (CMV)
- kidney problems
- liver disease such as hepatitis, cirrhosis or Wilson's disease
- lyme disease
- prior organ or tissue transplant
- problems with general or regional anesthesia
Some of these issues will not necessarily exclude you from being a donor, but should be thoroughly discussed with your doctor.
Medical Procedures Used to Collect Bone Marrow and Stem Cells
The medical procedure you will undergo is described in the How Bone Marrow and Stem Cells are Collected section of our website. In most cases, the medical procedure will have a minimal, short-term impact on your health.
However, as with all medical procedures, there is a small chance that you may experience side effects that are more severe.
Before you agree to be a donor, you will need a physical exam to determine whether donating is safe for you.
Be sure to share with the doctor your complete medical history including illnesses and surgeries you have had in the past, even if you don't think they are important, as well as any current health conditions.
Most transplant centers have a different doctor or nurse practitioner than the patient's conduct the donor exam and interview.
Who Pays the Donor's Medical Bills?
In many cases, the patient's insurance will cover the cost of testing donors and collecting the bone marrow or blood stem cells. However, this is not always the case. Rarely does the donor's health insurance cover these expenses.
It's up to the transplant center to work out arrangements with the patient on how these costs will be covered. Some of the organizations listed in the Fundraising and Financial Aid section of our Resource Directory may be willing to donate funds to help if the patient's insurance does not cover donor expenses.
Ask Questions about Being a Bone Marrow or Stem Cell Donor and Explore Possible Outcomes
It is common for a donor to be reluctant to ask the medical team many questions about being a donor. Everyone is focused on helping the patient get well, and donors sometimes feel selfish asking questions about their own health or seeking counseling if they have doubts or worries.
It's important to remember that you are a patient too. Your health and well-being are every bit as important as that of the patient. You are entitled to have your questions and concerns thoroughly addressed.
A very important question that donors often neglect to ask is "Will I save my loved one's life if I donate my marrow or stem cells?"
In most cases, the answer is maybe.
If you have been selected as the best possible donor, you are giving your loved one a second chance at life. Even if you are a perfect match, there are many other factors that will determine whether or not the transplant is successful.
In most cases, your cells will engraft in the patient and begin producing healthy new blood cells. If you measure success in this way, the overwhelming majority of transplants are successful.
However, the likelihood of long-term success will also depend on the patient's diagnosis, stage of disease, age, general health and prior treatments. Problems that can arise after transplant such as infection, organ damage or severe graft-versus-host disease can impact survival. In some cases, the disease will come back several months or years after transplant.
It's best to have a frank discussion with the patient's doctor before the transplant about all the possible outcomes.
Many donors assume that a cure is guaranteed if they donate their stem cells, and are shocked if the patient develops serious complications or dies. Prepare yourself for all possible outcomes so you can better cope if problems arise.
Emotional Challenges for Related Donors
Although it can be exciting to have the opportunity to give a loved one a second chance at life, it can be stressful as well.
- Many donors wonder what they can do to make their stem cells better.
- Some worry that if the transplant is not successful it will be their fault.
There is nothing you can do to make your stem cells stronger or better. Eating right, getting enough sleep, and making sure you are healthy enough to donate your bone marrow or stem cells when the time comes are the most important things you can do.
Even though many factors that determine the success of a transplant are beyond your control, you may still feel responsible for the outcome. This can be a heavy emotional burden.
It can help to discuss your feelings with a counselor or with another person who has been a donor for a loved one. The patient's hospital may have social workers who can help you think through these concerns. BMT InfoNet's Caring Connections Program can put you in touch with other people who have been donors.
Don't ignore your feelings. Feeling nervous, scared, responsible for the outcome or unsure about whether you want to donate is normal. Talking about these feelings with others is important.
What if I Don't Want to be a Donor?
Sometimes a relative prefers not to be a donor. You may:
- be concerned about your own health
- feel pressure from a spouse not to donate
- have a medical condition that would disqualify you as a donor that you do not want to disclose to other family members
If you are a reluctant donor, discuss your concerns frankly and confidentially with your doctor. Ask if the patient has other options if you choose not to be a donor.
If you choose not to be a donor, the medical team can tell your loved one that you cannot donate without disclosing the reason why.
Many Different Outcomes
There is no way of predicting with certainty whether a transplant will succeed or fail. One thing is certain, however: you, the donor, are not responsible for the outcome. You've done your best by donating your marrow or stem cells. The many other factors that contribute to the success of a transplant are beyond your control.
Be cautiously optimistic when donating marrow or stem cells. Hope for the best, but prepare for setbacks. With luck, your loved one will have many more years of life.
Watch a Video about Being a Related Donor
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Next Page: Being an Unrelated Donor