Some kids connect over sports, songs or other similar interests. For Abby and Cesi, it was their kidneys that brought them together.
It’s been a long road for both girls, now 10 (Abby) and 13 (Cesi).
Our nephrology team has been working with Cesi since summer 2020. She began dialysis in February 2023 and was fortunate to receive a kidney transplant a few weeks later. Abby first came to CHoR in February 2022 from her family’s hometown ER about an hour away. She was diagnosed with Wegener's granulomatosis, a rare autoimmune disease that attacked her sinuses, lungs and kidneys and led to end stage renal failure. She began dialysis immediately and received her kidney transplant that October. Their care has included hospital admissions, dialysis and clinic appointments up to three times per week, and monitoring care at home. They take many medications throughout the day, which also leaves them immunocompromised.
Abby and Cesi have a lot on their plates above and beyond the pressures of school and childhood – things most of their peers will never experience. That’s why their CHoR team connected them with each other.
“Both girls were very shy initially but were happy to connect with someone their age who has been through kidney transplant,” said Heather Lambert, clinical social worker for the nephrology team.
Abby’s favorite things are playing with her little sisters, her tablet, comics and video games. She was gifted her tablet shortly after diagnosis and it helped her get through her medical journey while staying connected to friends and family. Cesi enjoys spending time with her family, getting her nails done and swimming. She’s excited to become both a big sister and an aunt soon! Despite their different interests and primary languages – Abby’s is English, Cesi’s is Spanish – the girls have bonded in such a special way.
“They met via video call for the first time, and it was an awesome experience for Abby to chat with somebody who knew exactly what she was going through. Since then, they’ve kept in touch via messenger and often play Roblox together,” said Abby’s mom, Samantha.
Their relationship will continue to be helpful as they get older.
“We have many teenagers who struggle with taking their transplant medications consistently,” said Heather. “While this isn’t currently an issue for these girls, it could be an issue we see as they get older. Our hope is that their connection with someone else who is dealing with transplant will help normalize their treatment, ultimately leading to motivation to keep up with it. Non-adherence to medication management ultimately risks kidney rejection which would lead to them returning to dialysis and needing another transplant sooner than they would otherwise.”
Abby and Cesi are doing great and have excellent prognoses, but ultimately need another kidney transplant. Deceased donor kidneys typically last 8-12 years – and while they got their first transplants relatively quickly, the next may take longer. Children often receive deceased donor kidneys more quickly than adults. Ideally, the girls will be able to find someone in their community who’s able to be a living donor, reducing their time on dialysis or even avoiding dialysis altogether. Living donor kidneys tend to last longer than deceased donor organs too.
In the meantime, the girls have returned to their pre-dialysis lifestyles. They both attend school in person, though they miss more days than their peers because their lowered immunity makes them more susceptible to illness. They’re seen in clinic much less frequently than they once were, but they’re grateful for the CHoR team that continues to be alongside them each step of the way.
“The care received at CHoR has been the best hospital and doctor experiences we’ve ever had. From Dr. Bunchman’s brilliant team to the always smiling workers at the front desk, and the many various health care workers we’ve met at the hospital and clinic – your dedication to your patients is unmatched and truly inspirational,” said Samantha. “For a little over 8 months, we spent 3-5 hours three times a week at dialysis, and during that time, we met some of the most amazing humans who truly touched our lives. Abby also had many inpatient stays at CHoR and though going to the hospital can be scary for both children and parents, we always felt comfort knowing that her team was there waiting for us ready to give Abby the best care they could.”
Child life has also been important for the girls, offering comfort items, arranging arts and crafts days both in the hospital and at dialysis, providing pet therapy and more. They make sure Abby, Cesi and all patients understand what’s happening and that they’re as comfortable as possible through it all.
Perhaps the most integral members of the team, though, are the families.
"Our team has been touched by how dedicated both families are to caring for their daughters. These families have had to sacrifice a great deal to ensure their daughters receive their needed medical care. They’ve learned an incredible amount about nutrition, kidney function and transplant medication to ensure they maximize the life of the transplanted kidneys. Despite the challenges, both families diligently come to clinic while balancing the demands of work, caring for siblings and maintaining a household,” Heather added.
Thinking about becoming a living donor? The recipient’s insurance pays for potential living donors to be medically evaluated, so there are no out of pocket costs. VCU Health also coordinates with a program that provides financial support to living donors for travel and missed time from work as they recover.
There are also ways to help even if your blood type isn’t compatible with your intended recipient. A process called paired donation allows for a swap between two donors and two recipients, so the recipients can receive the kidney that is a match for them.
){kind=link}
){kind=link}
){kind=link}