What To Expect

After organ transplant surgery, many children do experience a profound improvement in their health and are able to engage in many normal activities and lead a happy life. However, it is important to keep in mind that each organ transplant surgery, recovery and outcome is very unique to each child and depends on many things such as the type of transplant, the health of the child, any underlying conditions of the child, the support network of the family and the consistency of care after the transplant.

Family members go though many emotions throughout the organ transplant process such as: fear, hope, anger, sadness, hopelessness, panic, joy, anticipation, anxiousness, fatigue and relief. These feelings do not go away once the transplant surgery has taken place. The organ transplant journey can impact a family emotionally, mentally and physically. The first year especially is an ongoing process of adjustments and readjustments to the new normal of a child’s life. It is important to remember that getting an organ transplant is not a cure but is instead the best possible medical treatment. As well, living with a transplanted organ means that your child will always be under medical care, have dietary restrictions, need medication and may need extra support at school and in the community.

Parents may find that they take on a new role for their child as they advocate for their child given their new health needs. Learn to advocate for your child at school, hospital, leisure activities ( sports) etc.

Getting the Support You Need

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Before, during and after the surgery, your focus will be on your child’s health and well being. It is not uncommon for families to feel stretched and at times overwhelmed with day to day demands of life. It is important to reach out to your family, friends, medical team and community to ask for support. People around you may not know what you need or may feel uncertain as to the best way to support you and your family. It may be as simple as asking someone to cook a few meals ahead to put in your freezer, doing a load of laundry or asking a friend or family member to arrange a play date for one of your other children.

Working with your Team

Your medical team is an excellent resource for support. Share your concerns with them. It is very important for parents to express to their child’s medical team what level of medical information they would like in regards to their child. Some parents like to know all the details of how their child is doing (e.g. blood test results, specific test levels or outcomes etc.) and some only require specific information when medical issues are pressing and need addressing. Working with your medical team is also vital in achieving the best care of each child and their unique needs.