Organ Transplant and Mental Health

The transplant experience involves many difficult aspects that can lead to mental health symptoms. Knowing what mental health symptoms to expect can help your family cope during this stressful time. Some common experiences are described below.

No matter how short or long the wait might be, every minute may feel like it is taking forever for families who are wanting to see their loved one be well and healthy. Waiting can make many children and family members feel anxious.

Along with waiting, each day and moment can feel full of uncertainty: When will the organ arrive? Will it be a good fit? What about school and work? These are just some of the hard questions that families ask themselves each day.

All children will need to stay at Seattle Children’s Hospital to recover after receiving a transplant. Recovery can take a few weeks or longer. Once your child leaves the hospital, your family may need to live close to Seattle Children’s Hospital for at least a few months. Your family may feel socially isolated from your community and normal routines during this time.

It can also be difficult to go home after transplant and re-engage in your community, especially if you feel dramatically changed by the transplant experience while your community has continued their lives as usual.

Fear is a normal emotion when your child needs a transplant. Your child may feel fear when having painful, invasive procedures or an episode of rejection post-transplant. You may also be afraid for your child.

Many caregivers describe feeling helpless during their child’s transplant journey when they cannot make their child feel better, especially when relying on your child’s medical team and waiting for a new organ.

Transplant often disrupts families’ finances due to long hospital admissions, possible temporary re-location to Seattle, possible leave from work and your child’s long-term care needs. It is normal for families to need to lean on their support networks during this time to help with bills and financial responsibilities, but it may feel uncomfortable to ask others for help.

Transplant management requires regular outpatient clinic appointments, daily medicines and lifestyle changes. Caregivers are responsible for their child’s disease management when the child is young. Caregivers often continue to help with transplant management well into their child’s teenage and young adult years. Providing long-term caregiving duties for a loved one often creates stress, caregiver fatigue and decreases a person’s ability to spend time caring for themselves.

Providing care for your child during transplant requires having a lot of flexibility and this may disrupt work schedules, childcare for siblings or family vacations. Your child may need unplanned emergency labs, tests, clinic visits or even a re-admission to the hospital. Your child’s medical care requires your family to be very flexible during and after their transplant and this can be stressful for caregivers and families.

Supporting your child with a transplant may affect your whole family’s quality of life. Siblings sometimes feel left out when the focus and attention is on the child getting a transplant. Your family will need to follow certain guidelines and restrictions to keep your child safe after transplant.

The event of a transplant may cause you, your child or your family members to notice symptoms from the following mental health diagnoses:

Anxiety, which includes feeling nervous, restlessness, feeling a sense of impending danger, having an increased heart rate, sweating, fatigue (being very tired), trouble concentrating, trouble sleeping, or difficulty controlling worries.

Depression, which includes feelings of sadness, tearfulness, feeling “empty” or hopeless, anger, irritability, loss of interest in activities you used to enjoy, trouble sleeping, fatigue, appetite changes, feelings of worthlessness or guilt, or trouble concentrating.

Post-traumatic stress disorder (PTSD), which includes intrusive memories, flashbacks, nightmares, emotional distress, avoidance of the triggering situation or thoughts, negative thoughts about yourself, other people, or the world, hopelessness about the future, feeling detached from others, feeling emotionally numb, being easily startled, feeling “on guard,” self-destructive behavior, having trouble sleeping, irritability, anger outbursts, trouble concentrating, feelings of guilt or shame, difficulty experiencing positive emotions, or memory problems.

There are many things to try if your family notices mental health conditions or symptoms. Some things that might help are listed below. 

It is very important to practice good coping skills during the entire transplant journey. Through coping, you will be more likely to meet the demands of the transplant journey and aftercare. Below are examples of different types of coping skills that you can practice regularly to minimize the emotional impact of transplant.

Problem-focused coping is when a person copes by changing a behavior or creating a plan to take action. Examples include finding a counselor for therapy, creating a to-do list, establishing healthy emotional boundaries, and working on time management.

Emotion-focused coping is when a person does an activity meant to help change their mood or manage their emotions. Examples include cleaning, cooking, yoga, drinking tea, gardening, drawing, exercising, reading, taking a bath, writing in a journal, listening to music, meditating, and breathing exercises.

• Seattle Children’s has a program that connects parents with other caregivers – please email [email protected] or call (206) 987-1119 to learn more about this program and get connected. 
• There are also groups specific for transplant families on Facebook that many people find helpful.
• Ask your social worker for help getting connected with another transplant family from Seattle Children’s.

• It may help to share your family’s transplant journey with friends and family. Some families appreciate a lot of communication and support from their social networks, but this can cause more stress for others. Find what works best for your family and tell your support network what you prefer. 
• Friends and family may also be able to support you by organizing meals or helping you fundraise.

Your child’s social worker can support your family with your emotional journey through transplant. Please talk to your child’s social worker if you begin to notice any mental health symptoms in your child or family members so that they can support you.

Find a counselor for individual or family therapy. Seattle Children’s can provide a counselor for your child. You can ask a member of your child’s care team for a referral. Other family members should call their health insurance to ask for a mental health counseling referral. Please ask your child’s social worker if you need help getting connected to a counselor. Your child’s social worker can help connect your family with a counselor.

Talk to your primary care doctor about your symptoms. They may talk to you about medications or other treatments based upon your personal health history.

Transplant resources and websites for further reading can be found at seattlechildrens.org/clinics/transplant/patient-family-resources.