Friday, April 8, 2022

Tackling Renal Insufficiency Person by Person 

Alisha Loy is a Quality & Operational Improvement Engineer in Central Sterilizing at UI Health Care. In her role she manages the Flexible Endoscope Reprocessing Center (FERC), IRL, and Ambulatory Clinical & Procedural areas for point of use instrumentation. In addition, Alisha is a mom and a fierce patient advocate.  

In 2009, while working in the field of social services, Alisha welcomed twin boys, Tripp and Rowdy, to her family. Childbirth and parenthood are hard in the best of situations. In Alisha’s case, it was immediately clear that one of her sons, Tripp, was fighting to stay alive due to an unknown medical complication. The prognosis at the time was minutes to hours. Tripp was later diagnosed with a rare genetic condition that impacted mid-line body systems, including kidneys, known as Kabuki syndrome. Kabuki syndrome is a multisystem disorder that affects a person’s entire body. At the time, there were only 60 diagnosed cases worldwide.  

The diagnosis thrust Alisha, and her family, into a whole new world. Not knowing how much time they had, they shifted priorities and learned how to become care givers, advocates, and patient care team members. The family spent large amounts of time at medical appointments and hospital admissions. Tripp’s care involved 21 different hospital services. Over the course of almost 3 years, he had 35 separate hospital admissions and spent over half of his life as an inpatient. Even with her background in social services, Alisha found the experience all consuming. “I was overwhelmed with lingo. No one teaches you how to be an advocate and a member of care team. Those were things I had to learn.” During these 3 years, Alisha learned how to navigate the hospital system, coordinate support for her son, crisis plan, communicate with providers and nurses, figure out what resources were available to them, and figure out where there were gaps. It was during one of Tripp’s month-long admissions, for kidney transplant, that the TRIPP Foundation was created.  

The TRIPP Foundation’s mission is to “Empower children suffering from kidney disease and their families through coordination of support, crisis planning, resources, advocacy and financial assistance.” The goal is to help kids be kids. The foundation offers many services to families, including advocacy, 1:1 coaching, and mental health supports for the children and their siblings and parents. The foundation helps families pay for necessary medical supplies that often aren’t covered by insurance, such as blood pressure cuff kits and custom protective gear known as Zoombang shirts. A fun and practical toy given to each child diagnosed with a renal issue is a “Kidney Friend,” a stuffed character that is cute and cuddly, but also provides physical support that can help lessen the pain when kids sneeze or cough. Most of the families find out about the foundation through their connection with UI Health Care and the close partnership they’ve formed with the Pediatric Nephrology, Dialysis, and Transplant teams. 

Covid has impacted the TRIPP foundation and their ability to provide in person services and community awareness events, but the organization was able to deftly pivot and increase financial support to meet increases in needs covering medical equipment, housing, travel expenses, and medications.  

Tripp fought his hardest, but he unfortunately passed away one month shy of his 3rd birthday, in June 2012. Alisha, and her family are grateful for the time they had with Tripp and for everything they learned along the way. The care their family experienced at UI Heath Care inspired the creation of the TRIPP Foundation and Alisha’s choice to come work at UIHC. To learn more about the incredible work Alisha does for families, and the community, check out the TRIPP Foundation’s website.