Being a Related Donor
If you have been asked to be a bone marrow or peripheral blood stem cell donor for 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.
Many related donors feel very responsible for the outcome of the transplant, even though this is beyond their control. Some wonder what they can do to make their marrow or stem cells better. If the transplant is not successful, some worry that it was their fault.
The medical procedure you will be asked to undergo if you are a donor is described in the stem cell/bone marrow collection section of our web site. The sections below discuss how to be tested to see if you can be a donor, medical information you should share with the patient's doctors and common concerns expressed by related donors.
We also suggest you view our webcast Related Bone Marrow/Stem Cell Donation: Risks and Benefits if you are considering being a donor for a loved one.
In order to determine whether or not you can be a donor for a loved one, you will need to have a special test called an HLA or human leukocyte antigen test. This 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.
The persons most likely to have the same HLA markers as the patient are the patient's siblings. Approximately a third of patients have a sibling with a matching HLA type. The remainder must either find an unrelated donor or use stem cells from a family member who is less than a perfect match.
The HLA test is simple. All that is required is a swab of the cells from your inner cheek or a sample of your blood. The sample is then sent to a laboratory for testing. The patient's doctor usually gives family members instructions on which tests are needed and where to have the test done. If you need help finding a laboratory that can do this test call BMT InfoNet at 1-888-597-7674 for guidance.
You do not need to have the same blood type as the patient in order to be a donor. Your HLA type is what matters most, not your blood type.
Impact on Your Health
For most donors, the medical procedure used to collect bone marrow or peripheral blood stem cells will have a minimal, short-term impact on their health. If you donate bone marrow, you may feel some soreness in your lower back for several days or weeks after donating. If you are donating peripheral blood stem cells, you may develop flu-like symptoms while taking the drug used to move the blood stem cells from the bone marrow into the bloodstream. These symptoms go away once you stop taking the drug.
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.
Some donors are more comfortable having a different doctor than the patient's doctor conduct the exam and interview. This can ease concerns that the doctor will consider the patient's health more important than the donor's. If this is not the standard operating procedure at the hospital where your loved one is being treated, don't hesitate to request an independent doctor if it will make you feel more comfortable.
Be sure to tell the doctor if any of the following conditions apply to you:
- 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
- A history of cancer
- A history of depression or other mental health problem
- Heart disease, heart attacks or a history of heart surgery
- Hepatitis or possible exposure to hepatitis
- History of 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 recipient
- Problems with general or regional anesthesia
Many of these conditions do not necessarily exclude you from being a donor, but should be thoroughly discussed with the doctor.
Ask Your Questions
It is very common for donors 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. If an answer is unclear, keep asking until you understand it.
Who Pays for All This?
In many cases, the patient's insurance will cover the cost of testing donors and collecting the bone marrow or peripheral blood stem cells. However, this is not true of every insurance policy. The donor's health insurance rarely covers these expenses.
Discuss this issue with the patient's transplant center. The transplant center needs 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 defray the cost.
Some donors need to take time off work for the physical exam which can result in lost pay. The procedure used to collect the bone marrow or peripheral blood stem cells from the donor can require additional time off work. If the donor is asked to travel out of town in order to donate the peripheral blood stem cells or bone marrow, this too will require time off work. Lost pay and travel expenses are typically not covered by the patient's insurance.
Exploring Possible Outcomes
A very important question that donors often neglect to ask is "Will I save my relative'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.
The tests that you go through to determine whether you are a match for your loved one only predict whether your cells are likely to 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 also 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. Preparing yourself for all possible outcomes can help you cope if problems arise.
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 peripheral blood 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 the donor's control, donors still often feel that they are 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. The person may be concerned about his or her own health, feel pressure from a spouse not to donate, or have a medical condition which would disqualify him as a donor that he does 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 and whether these options would give him or her the same chance for a cure or extended life.
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 peripheral blood 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.