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Kidney transplant patient, 23, diagnosed with a rare blood disorder

IU Health North Hospital

Kidney transplant patient, 23, diagnosed with a rare blood disorder

Christine Chibvongodze, 23 says she is glad the blood disorder came later. She doesn’t know if she would have been able to have a kidney transplant if it had come first.

By IU Health Senior Journalist T.J. Banes,

She sits quietly in an infusion pod at IU Health Simon Cancer Center. Just days after a highly contested basketball game in Purdue’s Mackey Arena, Christine Chibvongodze is showing her team favorite – all dressed in an Indiana beanie and matching crimson hoodie.

She chats with nurse Heather Cruz and is as matter-of-fact about her age and her health as she is about the final score of the game – 49-57 – with Purdue as the victor. Like her alma mater’s loss, Chibvongodze isn’t going to let her health get her down. In fact, she is several minutes into the conversation before she even mentions in a “by-the-way” manner that she has also had a kidney transplant.

At the age of 13, Chibvongodze was diagnosed with Nephrotic syndrome, a kidney disorder often caused by damage to small blood vessels in the kidney that filter waste and excess water from the blood.

“I knew there was no cure and I knew I’d need a transplant in the future,” said Chibvongodze, a graduate of Carmel High School. She was in her last semester at IU Bloomington majoring in criminal justice and minoring in sociology when she started peritoneal dialysis. By March of 2019 she was on hemodialysis.

Under the care of IU Health nephrologist Dr. Tim Taber and surgeon Dr. William Goggins, Chibvongodze received a kidney transplant on July 17, 2019. Her donor was her mom’s coworker who read about Chibvongodze’s need for a kidney on social media. Chibvongodze is the daughter of Joseph and Naphytay Chibvongodze. She has two younger sisters.

Life after transplant was going well. As a proud 2018 Indiana University graduate Chibvongodze was looking forward to pursuing a career in victim’s advocacy and possibly pursuing law school. As a student she volunteered at a domestic violence shelter in Bloomington working with children and also working at the courthouse on protective orders.

“I guess I just like to help and educate people. The criminal justice system can be overwhelming,” said Chibvongodze. She said her interest became personal when an acquaintance became a victim of rape. She became an advocate explaining the court process and encouraging her to seek counseling. “I want to do the same for other people, to become their advocate,” said Chibvongodze.

Those career plans were put on a temporary hold when Chibvongodze spent most of last year in the hospital.

It started in March when she was passing blood clots the size of fists accompanied by severe pelvic pain. She went to ER for blood transfusions but never a definitive answer to the issues. In April she began to lose sight in her left eye. She made an appointment with an eye doctor. Hemorrhages were detected in her eye and she was referred to a specialist. She was given steroids to alleviate inflammation but still no answers to the causes. Shortly afterward, she began having issues with her right eye.

In a matter of weeks she was so tired she could barely get out of bed. Her eyesight was blurry and she still had no answers. One doctor suggested she might have Lupus. By early May she became a patient of IU Health hematologist-oncologist Dr. Naveen Manchanda. After several days of inpatient, numerous plasma exchanges, and more testing, she had an answer. Chibvongodze was diagnosed atypical hemolytic uremic syndrome (aHUS), an extremely rare disease characterized by low levels of circulating blood cells.

She began infusions every week for a month of an immunosuppressive drug and will continue receiving the treatments every other week.

“So far it seems to be working. I thank God this was discovered after my transplant or I may not have been able to go through with the transplant,” said Chibvongodze. She’s looking forward to a healthy year and there’s something more – she recently accepted a receptionist job with IU Health North Hospital.

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