Jesus is a care partner for his younger sister, who, after visits to several doctors was diagnosed with kidney disease. She was told that she would need a kidney transplant. Jesus’ mom is older and was already dealing with some health complications of her own. That experience, coupled with Jesus’ background working in the healthcare field, made him feel more comfortable speaking with doctors.
As the big brother, Jesus holds an important role as his sister’s sounding board. She will call him when she needs an opinion on a medical issue or with questions on what she should do next, and Jesus will give her his thoughts. When his sister was sick and waiting for the transplant, Jesus would take her out once a week so they could spend time together. Now, post-transplant, they make a day out of her follow-up doctor’s appointments. As a supervisor at his place of work, Jesus feels lucky to have the flexibility to be able to help his sister in this way.
Jesus’ family is very close and are used to taking care of one another, so he doesn’t feel that their dynamic changed much with the transplant. Although the hospital did not give him much education or information on transplants, nor resources he could access, he felt comfortable enough with having his family for a support system. Jesus’ wife is also a nurse, and he often goes to her with any medical questions he has.
At one point, Jesus was in an emergency situation in which he had to advocate for his sister. She was in pain and it was taking a long time for a doctor to see her. Jesus had to remind the hospital of the patient’s bill of rights and push for his sister to get timely treatment.
Post-transplant can be a very anxious time. When the hospital told Jesus his sister was ready to be discharged after transplant, he couldn’t believe how fast it seemed. He remembers driving her home very slowly and trying not to go over any bumps because he was afraid of jostling her. Everything that happens post-transplant is scary and unknown—even an illness like a cold is cause for concern. Jesus said he was very on edge, waiting to see what was going to happen and how things would turn out, but as a care partner, he wasn’t really able to express this stress because he needed to be there for his sister.
Jesus did attend some support groups with his sister, and he found it helpful to speak with others going through the same experience as him. His sister is still in touch with her healthcare team, although Jesus would not feel comfortable reaching out to them for anything he needed, because he sees them as being a resource solely for his sister. He thinks it would have been helpful if the hospital ensured he had support group resources and knew where to find information he needed and what he could expect as a care partner.