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  • Writer's pictureKidney Foundation of WNY

Jessica Frysz's Kidney Story

I’m a Western New York native who grew up in Cheektowaga. I was raised by my parents Robert and Colette. I have an older sister, Angelina and am an aunt as well as godmother to my niece, Kayla. Growing up, I’ve always had a love for animals.

My kidney journey began at the age 11 months when I wad diagnosed with Atypical Hemolytic Uremic Syndrome (AHUS). At age one, my native kidneys were removed, thus beginning my long battle on dialysis.

In 1999, I did receive a kidney transplant that unfortunately failed after 9 days. After this, I was unlisted for 10 years.

After graduating from Maryvale High School, I attended Medaille College where I earned my bachelor’s degree in veterinary technology. I am currently a Licensed Veterinary Technician (LVT) in Tonawanda. I also have a degree from Bryant and Stratton College in Medical Assisting.

In 2008, I was asked by a former nephrologist to begin the process of being relisted. I went to many hospitals, including ECMC. Due to my complex disease it was thought to be hopeless for a transplant. A former nephrologist from Children’s made a referral to Johns Hopkins in Baltimore. It was here that I got the best care and even better, they have experts who have experience with AHUS. It turned out too later on, I have a genetic mutation.

It was on August 18, 2017, I received that important phone call. Not only this, it was my best friend Mary’s birthday. This is a significant event, because since we were in first grade, Mary had made a wish every birthday that I’d receive a kidney, and it was on this day that I was able to grant her wish.

My surgery took place August 19, 2017. My surgery took a grand total of six hours due to some complications occurring during surgery - the main one was finding a good place to put the kidney. The other was that I needed a bowel repair.

After surgery, my kidney worked IMMENSELY well! A perfect match, no less. Sadly though, it did fall asleep for one day and I needed one dialysis treatment to wake it up. The other issue that hung in the balance was that my bladder was severely atrophied and I could not keep up with the urine capacity, thus leading to me needing a nephrostomy tube for a year. I was able to build my bladder capacity, allowing me to urinate on my own.

I want people to know that despite the many obstacles I’ve faced while on dialysis, it never stopped me from enjoying life. On the other hand, kidney transplant life has opened doors to new horizons for me that were out of reach at one point. Organ donation has changed my life, allowing me to live life off of a dialysis machine, which I spent life on a total of 28.5 years.

Every day is an honor for not only myself, but my donor as well. I swore that I wouldn’t be like everyone else by naming my kidney after them, but I ended up doing so. I have participated in local kidney walks (including before transplant) to raise awareness through the Kidney Foundation of WNY. I’ve participated in the Transplant Games of America. I’ve even gave a speech speaking in front of medical professionals about how organ donation saves lives.

No one truly knows the magnitude of emotions that start to form when talking about the true affect donation has on the recipient and their families unless you witness this firsthand. Because of how long I waited to get to this point donation to me is none other than a miracle, and a relief as though a heavy weight has been lifted.

For my family it’s for sure considered a long-awaited blessing. My family and I have had moments where we’ve had been on edge with my health. I have even made family members cry tears of joy when I FINALLY received my gift of life.

Thanks to my team at Johns Hopkins, it was for sure possible. They worked day and night to find the best possible outcome, and I’m forever grateful.

My condition does not define who I am, I define who I am, and how I want my life to proceed. I lived life to the fullest and always will. I was given a year to live by my transplant team if I didn’t get a kidney. Thanks to my donor choosing to donate when they passed away, I was saved.

It was a long road of hardship for many years, but I finally the best destination: a life without dialysis. Even though I have to take medication by mouth and receive infusions every two weeks to ensure my kidney doesn’t fail, I wouldn’t trade anything in the world. And, being able to enjoy foods I couldn’t before and drink as much water I can is not too shabby either.

I participated in the Transplant Games 2020-2021 where I managed to do a 5K bike ride not only to raise awareness, but to fulfill my lifelong dream of doing so since my diagnosis of AHUS at age 11 months.

My main hobby lately has been working on diamond paintings and giving them to people as gifts. Currently, I’m working on one that will be displayed in my home. I do enjoy coloring, reading, and journalizing during my spare time. For many years, I had taken dance classes when I was younger, and was an avid participant in church as an altar server at the church that my family and I would attend.

Please consider donating! If you’re thinking about organ donation either as a living donor or deceased, please discuss this with your family and healthcare providers to ensure you are physically able to. Organ donation does save lives, I’m proof of it.

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