Resources

Bone Marrow/Stem Cell Transplant Frequently Asked Questions
Helpful information for patients, caregivers and families
(Bilingual Spanish/English)

15. What are the emotional considerations while undergoing transplant?

For some, going through the transplant is extremely difficult emotionally, whereas others find it easier than they expected. Some people are relatively alert and active during the transplant whereas others suffer greatly. Giving up control and losing one's independence and privacy can be a very big adjustment. In some cases, the medications you will take may affect your mood. It is common to feel alternating emotions, such as worry, hope, anger, fear, or even self-pity. Some patients find that while going through the transplant they lash out at the people who are closest and dearest to them. Dealing with a changed status and new role in the family may be difficult. You may find that other people are suddenly too protective or, in other cases, not as understanding as you wish. Taking it one day at a time and remembering to be gentle with yourself and others is helpful.

Learning about the anticipated course of treatment during hospitalization and possible complications is important, although it can also cause anxiety for patients and their relatives. Most transplant centers provide handouts about what to expect and possible complications. Many people find that having the information helps them adjust their expectations and gives them a sense of control.

A very important part of coping is communicating your needs and preferences to those around you—your family and your doctors and nurses. Things that may seem obvious to you may not be obvious to others. Let people know what you would like—what kind of food, what kind of schedule, what kind of care. Ask what your options are and find out what services are available to you.

Your caregiver or a social worker can also serve as your advocate. All transplant centers should have a social worker who can meet with you to discuss your concerns and help you manage your stress. Remember to ask for help when you need it. Professional counseling can also positively impact your emotional well-being. Although there are many different ways of coping, you might find the following suggestions helpful:

• Acknowledge the full range of your feelings, both positive and negative. Be honest about how you feel, and then begin to plan out first steps in coping with your difficult situation.
• Be kind to yourself. Take time for activities that bring you joy. Laughter and a good attitude can be powerful sources of support and healing. Clearly, if you are not feeling well, this can be quite a challenge. To the extent possible, try to incorporate some fun into your days. Rent some funny movies or ask friends and family to send you videos. Try to incorporate a few things you enjoy into your day.
• Communicate your needs! Often people will not know how best to support you unless you tell them. Be specific. You might want to create a list of tasks that would be helpful. Or have a friend coordinate the help that you need.
• If possible, try to arrange to have many different caregivers so that the burden is shared and is lighter for everyone. Some caregivers may be able to visit in the hospital, whereas others can help with rides to and from the doctor, as patients are not able to drive on their own for several weeks.
• Focus on the issues that bring meaning to your life—your religion, spirituality, interests, or passions.
• Exercise on a daily basis to improve your mood, promote health and maintain muscle strength.
• Use guided imagery and meditation to reduce stress. (See Resource Listing under Alternative, Complementary and Integrative Medicine.)

Often patients and families facing a transplant appreciate talking with someone who has been through the transplant experience, a BMT survivor or caregiver. The National Bone Marrow Transplant Link's Volunteer Peer Support On Call Program links up trained volunteers with patients, survivors, or caregivers. Whether by phone, e-mail, or written correspondence, being "linked" to a peer support volunteer can be very helpful. Hearing how someone has coped with a difficult situation can often better prepare you emotionally for your own journey and lets you know that you are not alone. It is equally helpful for caregivers to talk to others in similar circumstances.

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