Makela's quest for a kidney

Please visit us at Kidneyquest23.com

I am Makela's mom and let me tell you a little bit about her quest for a kidney.

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 21st 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 the 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.

Makela will turn 23 this year. She is currently living at home with us and her two younger siblings (Dom her oldest younger brother has Down syndrome). She has a passion for photography and plans to go to school for this once she has received a kidney.

Any funds raised will be used to help spread the word to find a living donor for Makela. If a donor is found, any funds left will be donated to the American Kidney Foundation to help others.

Thank you for reading- if you can't donate, please share to help get the word out.

If you are interested in being a live donor, please contact Barnes Jewish at 1-800-633-9906 ext 4 or visit their website: https://www.barnesjewish.org/Medical-Services/Transplant/Kidney-Transplant/How-To-Become-A-Living-Kidney-Donor/Living-Kidney-Donor-Evaluation-Process

Makela's blood type is A.

The Ward Family