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The emotional and psychological effects of stem cell transplantation

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Stem cell transplantation is an emotionally challenging experience for both patients and families. It's normal to feel anxious, scary, or depressed. It's health to seek help in dealing with your feelings.

When you face the prospects of stem cell transplantation, you may realize that there are still life-threatening illnesses. Deciding whether to get a transplant or not will add to emotional confusion. Sometimes it's stressful and you need to make decisions faster.

Information management

Your doctor will try very hard to give you a complete and honest explanation of your transplant experience. They want you to be fully informed of the risks you may have. However, the vast amount of new information is overwhelming.

Don't be embarrassed to ask your doctor to repeat something or translate it into understandable words. Sometimes asking one of the nurses to explain what a doctor means can help you understand the message better.

It will help you write down any questions you have before meeting your doctor. Consider bringing family and friends to each appointment, which can help you remember important details both before and after the implantation. Ask for recording or videotape discussions with the porting team and help you remember the answers to your questions later. Keep a file with brochures, handouts, personal notes and resource information in case you need to reference them later.

Put things in perspective

For many patients, the list of possible complications is frightening. Use language that your healthcare team can understand with the view of potential complications.

Which complications will definitely occur? Which complications occur occasionally, rarely? What is done to manage complications when they occur? Are the complications temporary or permanent?

Don't be embarrassed to ask questions over and over until you get an answer you understand.

Doctors may forget to mention that pain relief is provided when necessary. So, when you hear about many complications that can occur, you might assume you will fall into great pain. There may be painful complications associated with transplants, but there are a variety of effective painkillers and other strategies to alleviate discomfort.

Set realistic goals

Once you decide to have a transplant, it's best to focus your energy on what you can control, rather than staying on what you can't. Preparing your family for the transplant, following the recommendations of your doctor and finding ways to relieve stress is a way to focus your energy on useful activities that will help you recover.

Ask the transplant team to ensure you can set realistic goals during and after treatment. Don't be discouraged if your recovery takes longer than expected. The recovery period is slow, which does not mean that the implant is not successful. It helps to take one day at a time, rather than worrying about what will happen in five days, five weeks or five years.

Make it easier for yourself:

Don't worry if you feel sad or discouraged. These feelings are normal. Don't be surprised if the coping skills you normally use to navigate problems with daily life are not sufficient to help you during porting. You are experiencing a very difficult medical procedure. If you need help dealing with your feelings, ask for it. Seeking help is a sign of wisdom, not weakness.

Anger, anxiety, depression

Anxiety and distress are normal psychological effects and are predictable parts of stem cell transplantation experience. These are typical responses to highly stressful experiences.

Many patients benefit from mental health services during transplantation. If you need help, that doesn't mean you're falling apart or needing continuous service after recovery.

If you are struggling to deal with your anxiety yourself, you may be surprised or embarrassed. This is especially true if you have never asked for mental health services before.

Mental health providers can provide great ideas to help you deal with porting experiences. Ask if the transplant center has a social worker or psychologist.

Talk to others who have experienced a transplant

It may be helpful to talk to people who have experienced porting and gain insight into what to expect. BMT Infonet's Caring Connections program allows you to contact other people who have experienced the transplant or who were carers or donors for transplant patients. The port team can also connect you with people who have experienced the port.

Next page: Preparing for family and friends

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