Patrick McPartland/Staff Photographer - Vet tech, Jessica Frysz enjoys some time with her Guinea pig "Sam" at her home in Cheektowaga. Frysz suffers from a condition, called atypical hemolytic uremic syndrome. While not life-threatening, it does require a large commitment of time to treat. She hope that a kidney transplant will help her to leave a normal life off dialysis.
Jessica Frysz has never had a “normal” life. Diagnosed with a rare blood disorder at 11 months old, the Cheektowaga resident’s time has revolved around a dialysis machine ever since. Now 24, Frysz hopes that a kidney transplant from a live donor will allow her to live a life without the nine-hour-per-week treatment.
“It’s like a full-time job,” she said.
Frysz condition, called atypical hemolytic uremic syndrome, is not life-threatening, although it does require a large commitment of time to treat.
“What happens is that it impairs any major organ in the body and it also impairs any system in the body,” she said. “It acts almost like an autoimmune disorder and it happens where the blood cells back up and they sort of block the flow to any major organ; so my kidneys were damaged by this disorder.”
Frysz receives dialysis treatments on Monday, Wednesday and Friday for three hours at a time. She is unable to commit to anything without first consulting a dialysis schedule and cannot take a vacation without ensuring that she will be able to have her treatments.
“They go right into my right leg,” Frysz said of the 17-gauge needles used in the treatment. “I have an access that was surgically implanted in the right leg and they place two needles in and then what happens is then they can connect the lines to the machine to me, and then my blood goes in the machine, goes through a cycle and then comes back to me.”
A recent WKBW News 7 story about Frysz brought a large number of potential donors, although there have been no matches yet. Frysz’ own parents cannot donate because they share a genetic mutation with Frysz, called Factor H deficiency.
“It’s extremely difficult because you have to be meticulous about who is going to be a match and who is not,” she said. “It’s like a 50/50 shot. You either have a handful of people who are going to be a match for you or you have a handful who are not going to be a match for you.”
In 1999, Frysz underwent a transplant from a deceased donor, but the kidney was rejected after only nine days. She hopes that more people will come forward to be tested, but cautions that they should be familiar with the process.
“Do your research before you go ahead and get tested because it’s major surgery and it’s a major process to go through,” she said.
Until recently, Frysz, a St. John Kanty parishioner, had ministered as an altar server for 14 years.
“I did serve for my sister’s confirmation,” she said. “I was asked to do that,” in addition to first Communion, Christmas and Easter Masses, and other special events.
Frysz said that her faith has been important to her in dealing with her medical issues.
“I would not be here,” she said. “That has helped me stay here with everybody.”
Despite the major demand on her time, Frysz manages to work two part-time jobs. She is a New York state licensed veterinary technician and works at both a vet clinic and a dog daycare. She said that she wants to work with exotic animals in the future. A transplant, she said, would allow her to open up her schedule in a way she has never been able to do before.
“It would mean the whole world to me because it would give me a normal life again,” she said. “I’ve never actually had a normal life. My life has been revolving around a machine and hospitals, nurses, doctors, everything. It’s been almost like being trapped in a way. It would free my life entirely.”
Anyone interested in volunteering to be tested as a possible match to Jessica can email her at email@example.com or call her at 716-507-5981.
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