Heart Transplant Program

Learning about the need for transplant

It can be extremely stressful and overwhelming for your child when he finds out he needs a transplant. He may feel:

• Shock and fear at the severity of their illness
• Doubt and denial about the need for transplant
• Anger at the thought of physical, dietary and other potential lifestyle restrictions

They may also feel threats to their sense of independence, and have trouble incorporating the idea of “transplant patient” into their growing identity.

The waiting list

Being on a waiting list is a difficult time for patients and their families. Travel is restricted and steps need to be taken to make sure you can get to the hospital in time when an organ becomes available. It’s not uncommon to feel that your life is not your own. Depending on your teen’s situation, she may:

• Feel anxiety while waiting for an organ to become available
• Grieve for her former “normal” life
• Feel guilty that someone has to die for an organ to become available
• Feel angry about the organ allocation process
• Seem to regress, perhaps by clinging to his parents
• Show angry and oppositional behaviors

Receiving the call that an organ is ready

Getting the call that an organ is ready is a time of incredible relief—and anxiety, too. Remember that even after receiving a call, the transplant may not take place because the organ may be damaged or not as good a match as hoped, or because your child is too sick for surgery when it becomes available. This can cause significant disappointment, frustration and anger for your child and family.

After transplant

Immediately after the transplant, medications and the recovery process could lead to temporary mental changes, causing your child to wonder if he or she is “crazy.” He may also feel anxious about leaving the hospital when the time comes, overwhelmed by idea of their new self-care routines.

Most transplant recipients experience extraordinary relief immediately after the transplant. Later, as the honeymoon period ends, the reality of living with a new chronic illness sets in. Recovery is a gradual process, and your child may feel disappointed by the pace or frustrated by setbacks. They may also show an increased interest in learning about the donor and feelings of sadness and guilt about the donor and donor family.

As your child begins to feel better and gets back to his or her regular activities, there is a risk that he or she may choose not to take his meds. This is called “non-adherence,” and may happen for several reasons:

• After time passes the child feels healthy and sees less reason to take medication.
• He or she may feel a strong desire to feel “normal” and ignore the requirements and restrictions that make him or her feel different from peers.
• He or she may resent the need for close monitoring.
• He or she may find it difficult to incorporate a medical regimen into a daily routine.
• The medications may have side affects such as weight gain, excessive hair growth, mood swings and irritability that affect self-esteem.
• He or she may feel angry at having to take medications, forget to buy or take them, and otherwise take his or her anger out on the medications. 

Your child may also feel:

• The whole transplant process, including the side effects of medication, has taken over his or her identity and decreased his self-esteem
• He's lost a sense of belonging, dignity and respect from others
• That his parents are overly worried, or over-involved, in his life and treat him like a younger child
• Concern about falling behind in school, leading to feelings of anxiety and hopelessness
• Scared and anxious about organ rejection and the chance of death
• Perceived peer rejection and experience loneliness or withdrawal
• The restrictions placed by his or her parents are too rigid

If the person who donated your child’s organ is living, your child may feel:

• Obligation of gratitude to the living donor
• Anxiety about demonstrating this gratitude
• Anxiety about the “control” a donor has over them, especially if the donor is a parent
• A wish that they had received an organ from a deceased donor instead
• Pressure to care for an organ that they still see as the donor’s organ
• Concern about potential health risks to donor (such as the donor’s ability to live with one kidney)

How you can help

After your teen's operation, your support and understanding are very important. A transplant is an intense, stressful and emotional experience for both patients and families, and sometimes this can strain communication. Remember that good communication goes both ways:

• Encourage your child to talk openly with you
• Keep your initial focus on listening to what your teen is saying, and making sure you understand what he or she means

Sometimes what a teen needs most is simply to feel understood. 

Here are some other ways you can support your teen before, during and after the transplant:

• Have open and honest discussions about the need and the reason for the transplant.
• Include your teen in decision-making when possible.
• Make sure she knows what medication she is taking and why.
• Help your teen figure out ways to remember to take medication on time (like setting an alarm on his or her cell phone).
• Psychological support before, during and after the transplant might help you, your teen or your whole family.  
• Encourage your teen to interact with transplant patients near their own age. This can reduce feeling “different.”
• Encourage them to take on chores and care for younger siblings as appropriate, so they still feel like they are contributing. A sense of purpose is very important.
• Your child is the same person he or she was before the transplant. Help her to remember this by maintaining continuity with your family’s pre-transplant life, as appropriate. 

Your child’s transplant team is here to help. Please contact them with any questions you have.