Kidney for Kinsey: A Parent's Perspective of a Child's Kidney Failure


There are kids out there who can teach adults a thing or two. Kinsey is one such kid. Diagnosed with kidney disease at only 5 years old, she had to go on dialysis. But with a cheerful and strong spirit, she hung in there and is prevailing. Thanks to a recent kidney transplant, Kinsey is now off dialysis and dedicated to raising awareness about kidney disease. Some "kid."

 

Part 11 | Trusting My Gut

Nadine and Kinsey talk about the medications that Kinsey is on. Nadine also talks about being proactive in your child's healthcare and trusting your gut when it comes to your child's health - no one knows your kid quite like you do.


About Nadine and Kinsey

Our whole life turned upside down when we got the devastating news that Kinsey was in kidney failure and diagnosed with end-stage renal disease. This diagnosis came out of nowhere and hit us like a ton of bricks. Kinsey was a healthy, active, 5-year-old girl who suddenly developed this unimaginable, life-threatening condition, which is extremely rare in children.
 
She was hospitalized for over 2 weeks in January 2014, underwent a total of 4 surgeries, and suffered from a seizure among other complications. She takes numerous medications and daily shots to survive. She also follows a very restricted renal diet that prevents her from eating all of her favorite foods and retards her growth. She is currently on dialysis 3 times a week for 3 hours each session where she is hooked up to a machine (through a catheter that is connected directly to her heart) that cleans out her blood and removes fluid in an effort to avoid a harmful build-up of toxic wastes in her bloodstream.
 
These sessions, needless to say, are incredibly hard on her 38-pound body. They wipe her out, create unbearable muscle aches and pains and drain all of her energy, however, are necessary to sustain her life. The best shot at living an “almost” normal life for Kinsey is through kidney transplantation as she cannot continue living on dialysis alone.
 
I as well as 2 other family members were tested however were ruled out secondary to underlying medical conditions that exclude us from being donors. A live donor graft has the best survival rate and is the ideal treatment choice, especially for young children like Kinsey. I am a parent who like any other parent out there wants to see their child live a long, healthy and happy life. It is our ultimate dream for our children. While we can all live a full, active life on only one kidney, I realize and do not take lightly the huge sacrifice that is involved in being a donor. Kinsey is a very brave little girl who has been through in her young, innocent years what most of us will fortunately never experience.
 
Through it all, she smiles and pushes through with resilience and strength that is both admirable and inspiring. Instead of engaging in play dates with other children, Kinsey spends her time in hospitals, connected to machines, getting needle pricks and undergoing procedures. 

 

Learn more about the 360 interview series.

 

Previous Chapters:

 

Part 1 | The First Symptoms

Nadine shares with us the first symptoms of her daughter's kidney failure.


Part 2 | Unknown Etiology & Procedures

Nadine discusses the shock of learning about Kinsey's kidney failure and its severity as she wasn't exhibiting many of the main symptoms. Nadine also talks about Kinsey's dialysis treatment before they found a kidney donor.


Part 3 | The Waiting List

Nadine discusses the waiting list in New York City for children needing an organ transplant.


Part 4 | Searching for a Donor

In this segment of her 360 Interview, Nadine reflects on being tested to donate a kidney to her daughter, Kinsey, and the steps she took when she was told that she was an unsuitable donor due to a blood clotting disorder.


Part 5 | Gaining Fame

Nadine talks about taking the campaign to find a kidney donor for her daughter to the public.


Part 6 | Finding the Match

Nadine talks about how finding a match for Kinsey was a very humbling experience and reminded her of how wonderful people are. She also shares her thoughts and fears about the actual surgery.


Part 7 | The Procedure

Nadine discusses the surgeries for her daughter and her daughter's kidney donor, and her joy that everything was a perfect fit.


Part 8 | Recovery & Treatment

Nadine talks about Kinsey's week at the hospital post-transplant and the large amounts of medications Kinsey needed to take every day.


Part 9 | Explaining to Kinsey

Nadine explains how she worked with the childlife team at Kinsey's hospital to explain to Kinsey about her condition and surgery. Additionally, having a career as a children's therapist helped and she explained everything to Kinsey honestly and in basic terms Kinsey would understand.


Part 10 | A Conversation with Kinsey

Nadine talks about Kinsey's relationship with her kidney donor and we also hear a few words from Kinsey.


 

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