Jeanne has been caring for her daughter since she was very young. As a child, a viral infection attacked her daughter’s heart, causing her to need a heart transplant; in 2020 as a young adult, Jeanne’s daughter needed a kidney transplant as well. Jeanne has been her daughter’s caregiver since the heart transplant, and she was the living donor for her daughter’s kidney transplant.
Much of the time Jeanne felt like she was flying by the seat of her pants. She did not get much education from the healthcare team, except on the medication her daughter would need after her 9-month stay in the hospital post heart transplant. When doctors told Jeanne her daughter was ready to go home, she was terrified about her ability to continue to heal without medical machines and professionals. Jeanne feels this fear is only heightened when the transplant recipient is one’s child, and the caregiver hears stories of other children’s experiences. She does not feel the medical team reassured her or gave her information on what could happen and how she could handle it.
Jeanne’s daughter was able to remain with her pediatric transplant team for her kidney transplant despite being over age 18 at the time of transplant, for which Jeanne was grateful. Her daughter has a very good relationship with the team and can reach out any time she needs. However, Jeanne didn’t feel that she was a priority to the team as a caregiver, and once her daughter turned 18 they stopped looking to her for input. She feels that there should be a system in place that allows the team to check in with the caregiver and be sure that they’re comfortable in their evolving role.
While pre-transplant seems like a blur now, post-transplant was the hardest time for Jeanne as a caregiver. It took her a year or two post-transplant to address and realize what she had gone through while her daughter was in the hospital. Jeanne had to resign from her job to fully care for her daughter, a huge financial hit for her family. She was not offered financial support services from the hospital and the assigned social worker did not communicate with her about options. She believes the hospital may not have thought they looked like a family who needed help, and that the door was shut on her when they left the hospital. The caregiving experience also caused cracks already in the foundation of her marriage to deepen, and she and her husband divorced.
Jeanne has an extremely close relationship with her daughter and has never stopped caring for her. She has not found any caregiver-specific supports anywhere, but she and her daughter have become involved with an advocacy group working on legislation for transplants.
Jeanne feels the medical team could have done more to support her. She recommends that transplant centers have a separate department just for caregivers to ensure they know there is information and support available to them. This department could provide relationships, financial and workplace support, and information.
While in the midst of the transplant journey, it’s important to give caregivers the support they need when they need it, without overwhelming them. Jeanne looks back on her experience and knows it has made her and her daughter very close, and that her daughter is just now beginning to understand everything Jeanne did for her.