Yang has been caring for her son who was diagnosed with chronic heart failure at a young age. After several surgeries as a child, her son received a heart transplant in 2018 at the age of 15. Yang believes that caring for his chronic heart condition prepared her somewhat for being a transplant caregiver, although not completely. Even though the heart transplant was successful, Yang will be a caregiver for her son for life.
The time Yang’s son spent on the transplant waitlist was very short—just two weeks. Yang and her family were thoroughly screened by the healthcare team to ensure that her mental health, family stability, and financial situation would provide her son with the proper care. Since this pre-transplant period was so short, Yang does not feel like she fully understood what it would be like to be a transplant caregiver. She was not emotionally prepared and could have used much more support, especially as a caregiver and an advocate in this very specialized area of transplant.
To become a transplant caregiver, Yang had to quit her job. Providing care for her son is full-time work, and it was impossible for her to be spending hours a week away. Yang is an immigrant and does not have any close family in the United States, so she does not have built-in family support. One difficulty Yang talks about is caring for her daughter as well as her son. Because her son has been so ill, most of Yang’s attention has had to be on caring for him, and as a result her daughter has become very independent.
While her son was in recovery post-transplant, Yang stayed at the Ronald McDonald House. This allowed her to go back and forth between the hospital whenever needed. They also had on-site physical therapy for her son, and a psychiatrist. Because the other people staying in the House were going through the same experience, Yang felt supported in that they could all speak with one another and ask each other questions about what they were going through.
Once they left the Ronald McDonald House, Yang felt an acute support drop-off. She did not know medical terms, and it was a time of great uncertainty for both her and her son. She felt like they were expected to go from beginner mode to expert mode immediately. When her son switched from pediatric to adult care, the support from the healthcare team became even more scarce. Yang was not provided any information or support on this transition and was completely overwhelmed by the system and what she should be doing.
This transplant came at a difficult time for her son, who was already in a transition period of his life as a teenager. Yang explains that teenagers do not have much concept of death and their own mortality, and her son was forced to face these subjects. He was able to go to college in New York, across the country from Yang, but the first time he had to go to the ER was very hard on them both. He moved back home to finish his education. Yang says her mental health has taken a hit, and it became very important for her to realize when she needed to ask for help, including seeing a therapist herself.
Yang is grateful for the opportunity to care for her son, and for how close the experience has brought them. She has joined Transplant Recipients International Organization (TRIO) in the hopes that she can help guide transplant caregivers through some of the challenges she has faced. As for the support she believes should be given to transplant caregivers, she states that there needs to be more casual support, not necessarily with medical advice but professionals reaching out and asking caregivers how they are doing. She also understands the importance of self-care through her own experience and hopes to see more respite and retreat options for transplant caregivers.