Stem cell transplantation provides hope for many patients diagnosed with diseases that were once thought incurable. This hope sustains patients and their families through the difficult period of treatment and recovery. Nonetheless, undergoing a transplant and coping with the recovery process is a trying experience.
Getting Information
Doctors strive hard to give you a complete and honest description of the transplant experience. They want you to be fully informed about possible risks. However, the sheer volume of new information can be overwhelming.
Don’t be embarrassed to ask your doctor to repeat something or to translate it into words that you can understand. Sometimes, asking one of the nurses to explain what the doctor means will help you better understand the message.
- It helps to write down any questions you have before meeting with your doctor.
- Consider bringing a family member or friend with you to each of your appointments who can help you recall important details.
- Ask to record or videotape discussions with the transplant team to help you later recall answers to questions.
- Keep a file with brochures, handouts, personal notes, and resource information in case you need to refer them later.
Set Realistic Goals
The time spent preparing for, undergoing and recovering from a stem cell transplant can seem never-ending. Patients seldom make daily progress by leaps and bounds. Each day will bring a small step forward, maybe a little backsliding, or no change at all. This slow pace of progress can be discouraging.
Ask your transplant team for a realistic estimate of how long your recovery will take. If your recovery takes longer, don't be discouraged. A slower recovery period does not mean that you are less likely to be cured.
Anger, Anxiety and Loss of Control
Anxiety and distress are a normal and expected part of the transplant experience. These are very normal reactions to a very stressful experience.
As you prepare for transplant, you may feel a loss of control. A disease has taken control of your body. You're dependent on a medical team you barely know to save your life. The treatment will leave you weak and dependent on others for several weeks.
If you are used to being in charge, taking care of yourself, or being the person upon whom others depend, you may find feeling so weak upsetting. The loss of control can cause both fear and anger.
You will receive a lot of medications during transplant. Some of these medications can impact your brain and feelings while they are helping your body recover.
Talk With Others Who Have Been in Your Shoes
You may find it helpful to talk with someone who has been through a transplant to get some insight on what to expect. BMT InfoNet's Caring Connections Program can put you in touch with another person who has been through a transplant, or a person who has been the caregiver or donor for a transplant patient. Your transplant social worker may also be able to connect you with someone who has been through transplant.
Take Advantage of Professional Help
You may feel surprised or embarrassed if you have trouble coping with anxiety on your own. This is particularly true if you have never before sought mental health services.
Needing help to cope with your emotions during treatment is normal. If you need help, it does not mean that you are falling apart, or that you will require ongoing services after recovery.
Ask if there is social worker or psychologist at your transplant center with whom you can talk or consult BMT InfoNet's Directory of Mental Health Providers.
One Day at a Time
Although it sounds trite, taking things a day at a time or even an hour at a time helps. Focus on the things over which you have some control, rather than worrying about all the details that are beyond your control.
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Next Page: Preparing Family and Friends
Updated June 2024
