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Caregivers' Guide for Bone Marrow/Stem Cell Transplant
Practical Perspectives

The Caregiver Journey

A Perspective on Unrelated Donor Transplants
by Kate Montgomery

Imagine for a moment someone told you that for the next several months you were going to put your life on hold. You would leave your job, postpone all current activities and family responsibilities and move to a new address. If you have accepted the role of primary medical caregiver for someone in your family, you are probably making some of these changes right now. Being a caregiver for a family member receiving an unrelated donor stem cell transplant brings this unlikely scenario to life. This rigorous treatment doesn’t happen without a caregiver standing by the patient, ready to help.

While an unrelated donor stem cell transplant is a source of hope for patients looking for a life-saving cure, it brings a unique set of issues and challenges. Compared to a related donor transplant, an unrelated donor transplant can mean added time locating a well-matched donor, additional risks, and sometimes, a longer and more difficult recovery.You may also have to go to a hospital that is farther from home, away from the familiar nurses and doctors, friends and family.

As a caregiver for someone who may be undergoing an unrelated donor transplant, you play a crucial role to the patient’s survival and recovery. You will be challenged daily and, at times, will feel stressed by these challenges. Ultimately, you will find that you are not alone. You have people you can contact for help. An important resource is the National Marrow Donor Program (NMDP) and its Office of Patient Advocacy.

The National Marrow Donor Program
The NMDP facilitates more than 2,000 unrelated bone marrow/stem cell transplants each year for patients with life-threatening diseases who do not have matching donors in their families. About 70 percent of patients needing a stem cell transplant will have to search for an unrelated volunteer donor. To aid these patients, Congress authorized the creation of a national registry of volunteer stem cell donors. The NMDP operates this registry.

Nearly 5 million people around the world are currently signed up to be volunteer donors through the NMDP Registry. These volunteers have been tested and had their tissue type entered on the Registry. They have agreed to be listed on the Registry until their 61st birthday, and are willing to donate to any patient, anywhere in the world. From this willing pool of donors, more than 15,000 transplants have been performed to date. These transplants gave 15,000 people a second chance at life.

The Search for an Unrelated Donor
Compared to the process for related donor transplants, the unrelated donor transplant process usually takes more time, in part, because of the search for a suitable donor. Depending on the type of disease the patient has, there may be a very limited window of opportunity to find a matched unrelated donor. This causes increased worry and tension for all the family members. You and the patient may feel sad one moment and angry the next. As a caregiver, you may feel a sense of urgency and want to make sure that everyone involved is doing everything within their power to find a donor. Your biggest role during this time is to provide support for the patient.

The wait can be frustrating. You may feel a need to start your own recruitment drive to find a donor. And while helping to increase the Registry through donor drives is one of the best ways to help the greatest number of patients over time, it is extremely unlikely you will find a matched donor for the patient through your own efforts. If there is going to be a match, the donor is most likely already on the Registry.

There are several reasons why the search for a donor takes time. When the doctor first checks the Registry for a match, he or she asks for a preliminary search—-a summary review of how many potential donors may match the patient. The next step is a formal search. At this point, potential donors are actually contacted and further testing is done. During the formal search, the patient’s insurance company or family agrees to pay for the testing required to find a matched donor and pay for the transplant itself. The family or patient usually signs a consent form with the transplant center to start this testing.

This is a good time to contact the NMDP's Office of Patient Advocacy, if you haven't already. There, trained staff can answer questions and help you understand the unrelated donor search process. The Office of Patient Advocacy can also help you answer questions about insurance or other patient-support resources. When potential donors are identified through the NMDP, they are contacted to determine their willingness to donate and to request another blood sample for further testing. This higher level of testing is required to help minimize risks to the patient. Often several donors are tested to find the best possible match. As the caregiver, you share in the patient’s struggle between hope, disappointment, patience and frustration throughout the search process. It helps to talk to people who understand this process and can explain it to you, such as the social workers and transplant coordinators at the medical center or case managers at the Office of Patient Advocacy.

A Donor is Found
It is a great relief when a matched donor is identified and agrees to donate. But this opens the way for a new set of concerns associated with the transplant and recovery. You may wonder how you can help the patient keep his or her spirits up. At times, you might find it tough to keep your own spirits up. There’s no easy answer. It helps to share laughter, memories and even tears that help both you and the patient keep your hope for a life-saving cure alive. You may want to read about other people’s transplant and donation stories on the NMDP Web site at www.marrow.org.

Walking through the door of the hospital for the transplant stay is a profound moment, full of hope and fear, relief and anticipation. You may wonder, how will the patient's body respond to these cells? Will this be the cure, the end to this awful disease? Who donated these stem cells? Many of these questions may be in the minds of both you and the patient as you begin the transplant stay.

Risks After Unrelated Donor Transplants
After the transplant, many patients experience some degree of graft-versus-host disease (GVHD). GVHD means that graft, or the new stem cells (the cells from the donor) identify the patient (host) as foreign. This identification activates the new stem cells' immune response, similar to when your immune system fights and kills bacteria. For some patients who have a disease such as leukemia, some GVHD can be beneficial, because it kills leukemia cells. However, too much GVHD makes recovery from transplant more difficult. And until the patient's immune system recovers, there is an increased risk of life-threatening infections. The risk of GVHD is generally higher in an unrelated transplant than a related transplant with a perfect or nearly-perfect match.

The Recovery Process
After receiving the new stem cells, the days of waiting for the cells to grow and engraft begin. The recovery from unrelated donor stem cell transplant may be longer and more complicated than you expected.

While you're at the hospital, you may come in contact with other transplant patients and their families. Remember that each transplant experience is different.You may hear that a patient down the hall is recovering quickly and is ready to go home.You're happy for them, but it doesn't seem fair. Then you might share in the sadness of another family whose loved one is not doing well. It can be hard.

The changes you may see in the patient you are caring for might be dramatic. There may be hair loss and other appearance changes, as well as emotional swings from certain medications he or she may be taking. Since you see the patient every day, the changes are gradual and you’ll have time to adjust. It’s a good idea to prepare visitors for what to expect. This is especially true for children. Consider sending photos and videos back and forth between hospital and home to keep children connected and ready to deal with any temporary changes the patient has in appearance or functioning.

Leaving the Hospital
When the patient's cells start to grow and the white cell count increases--which shows that a fledgling immune system is developing--you can start planning to leave the hospital. You might be worried that it's too early and that you can't possibly handle the caregiving responsibilities. It comes down to simply doing the best you can each day. You'll find that even when it seems impossible, the necessary tasks still get done. Full recovery after an unrelated stem cell transplant may take a year or more. For the patient and his or her caregiver, this is a long journey. You may become exhausted with your caregiving responsibilities. That's to be expected. You will be eager to resume your old life--to pick up where you left off at work or school--but it's often hard to see beyond the day-to-day demands. Yet after this journey is finally done, you will have learned more about inner strength and the power of hope than you ever thought possible.

A Note About the Donor
Becoming a marrow donor can be a lot to ask. Donors must take time away from work and undergo a medical procedure that involves needles and some discomfort. In certain situations, donors are even asked to give a second donation for the same person. Yet donors are everyday heroes. Most donors are very committed, and they care about the unknown patient whom they may never hear from or meet.

The volunteer donor process is confidential to protect the donor and the patient. Sometimes the donor and the patient meet, and sometimes they don’t. Some donors want to remain anonymous. Some countries have different philosophies and laws that must be followed in order to be able to exchange life-saving stem cells. In some countries, the donor and recipient of the stem cells are never allowed to meet. The patient may never learn the identity of his or her donor, or even where that person lives. If the donor and patient are both from the United States, NMDP policy allows them to meet after one year, if both parties want to do so.

Your life and the life of the patient will have been touched by a volunteer donor. This is a person who was willing to give the gift of hope--a second chance at life.

The Journey Completed
When you survive the journey of unrelated donor stem cell transplants as a patient or a caregiver, you'll be a changed person. You are a hero for this patient as you put your life on hold temporarily to help someone in need and to be by their side. For more information about the National Marrow Donor Program’s Office of Patient Advocacy, please call 888-999-6743.You can also visit our Web site at www.marrow.org.

Kate Montgomery, MSW, LICSW, is a Manager in the Office of Patient Advocacy, National Marrow Donor Program. She provided individual, family and group counseling while working for ten years as an oncology social worker at Fairview University Medical Center, first in the GYN Oncology Program and then for six years in the Blood and Marrow Transplant Program. In her current role at the Office of Patient Advocacy, she works to improve access to information and services for patients and families who may need an unrelated stem cell transplant. She is a member of the Association of Oncology Social Workers.

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