Makela's Kidney Journey

In early June of 2022, Makela caught COVID. Before this she had been struggling with keeping food down and feeling fatigued, and had been waiting on a new primary appointment and convenient care hadn't helped despite multiple visits. A few days into having COVID, she had trouble breathing and went to the ER to get checked out. This is when her kidney journey began.

 

The ER doctor ran blood work which came back showing she was in kidney failure. Her creatinine was at 22- normally this is under 1. The doctor stated she should have been in a coma, and that this was the highest creatinine he had ever seen. She was admitted to the hospital where they tried to determine what was happening. Multiple treatments later, it was decided that she was going to have to have dialysis to correct her levels until they could determine the cause.

 

She was transferred from OSF to Carle as OSF didn't have the ability to place the catheter needed to start dialysis, and wanted to wait for a biopsy. Every test they gave her kept coming back negative and no one could figure out what was happening- other than her kidneys were shutting down. She spent 2 weeks in the hospital, and had a biopsy before they finally cleared her as okay to come home-despite still not knowing why. She was diagnosed with end stage renal disease before her 22nd birthday and told that she would need a kidney transplant to ever be able to live a "normal" life again.

 

Makela has been doing dialysis three times a week to stay alive while the search for a living donor continues. This is not a viable long-term plan, as her condition will continue deteriorating without a new kidney. None of her family members have been a viable match. The wait for a deceased donor could be anywhere from 4-9 years.

 

Makela finally found out the cause of her ESRD in early 2023. She has Nephronophthisis, which is the deletion of a gene related to the kidneys. This is fairly rare occurring in .1-.2 in 10,000 live births.

 

Currently dialysis is doing its job to keep her alive, but it doesn't allow her to have the quality of life she deserves.