Nellie Zygiel has been in and out of the hospital for most of her life and was diagnosed with her third rare disease at the age of 10. Now 20, this Marion native wants to work at Boston Children Hospital and give emotional support to kids – remembering how therapy dogs and other supportive hospital staff helped her.
Zygiel, a Fairhaven resident finishing up her sophomore year at UMass Amherst, is faced again with health hurdles and is looking for public support.
“I was told I would need a kidney transplant and because of my age, most likely need multiple in my lifetime,” said Zygiel on her webpage, where she is seeking a donor for a kidney transplant. “Having doctors tell me ‘your body betrayed you’ and ‘to take time to grieve’ was not an easy thing to hear at 19. Naturally, this completely devastated me.”
Ten years ago, Zygiel was diagnosed with vasculitis, her third rare and chronic illness. This left her kidneys permanently damaged. Her health turned the corner until she received bad news last year that she would need a transplant.
During a recent interview, she said the donor list is filling up with people looking to help. She said that due to the Health Insurance Portability & Accountability Act, medical professionals cannot reveal too much.
“I’m trying to be very hopeful. I have my doubts because it is a scary process,” Zygiel said.
Zygiel was placed on the National Donor List in January.
The downside to this is that being on the list comes with a five- to seven-year wait, so most people end up going on dialysis while waiting. “Dialysis takes a complete toll on someone’s life,” Zygiel said on her web page. “It makes people weaker, tired and depressed. As a 20-year-old college student, that’s something I am desperately trying to avoid.”
Right now, if Zygiel can get the transplant before dialysis, the future looks bright.
She has a 3.9 grade-point average at UMass and is a member of the Commonwealth Honors College.
She is majoring in psychology and education and hopes to one day be a child life specialist at Boston Children’s Hospital and “help them cope when they are in the hospital and going through those tough times.”
“I have always wanted to do something with kids and help them out,” she said.
Because she is now over 18, Zygiel is working with a new team of doctors at Beth Israel and is happy with her team. However, she keeps in contact with her former medical team at Boston Children’s Hospital.
She said she remembers support specialists coming in with therapy dogs, cards and games, helping support her emotionally through those long hours in the hospital.
For information about donating or on whether your blood type is compatible with Zygiel’s, log on to KidneyforNellie.org.
By Jeffrey D. Wagner