With COVID-19 dominating health and world news alike, it can be easy to forget there are still other battles to fight — unless you’ve been racing against the clock to save a loved one from the ravages of another disease.
Jillian Nessler and her family have been doing that for more than a year. The 22-year-old Marlton native and Drexel University student dedicated herself to her father’s battle with polycystic kidney disease well before the pandemic started making international headlines and disrupting lives across the globe. And even though her own health is compromised — Nessler and her brother were also diagnosed with their father’s condition last year and are both at high risk, even though she says they’re both otherwise young and healthy — she continues to raise money and awareness while seeking a kidney match for her father, Tom.
Jillian Nessler admits it’s hard to reconcile one personal hardship with those of people navigating the fallout of COVID-19.
“When a world crisis happens, it’s hard to advocate for my father, and I had to do back-burner fundraising because a lot’s going on right now,” she acknowledged.
But the college student is still finding ways to keep the fight going.
Nessler’s efforts to help her father began in early 2019, when Tom received his diagnosis. The now 63-year-old husband, father, grandfather and decades-long union iron worker in Philadelphia was placed in the United Network for Organ Sharing (UNOS) for a kidney transplant. A year later, Tom is now in Stage 5 end-stage renal failure. With roughly 13 percent function of his kidneys, dialysis is the only current option.
Tom’s insurance will pay for only the dialysis treatment and not a kidney transplant, despite the family’s pleas for reconsideration and explanations of his situation. According to Nessler, the facts and numbers that accompany dialysis leave much to be desired: a low quality of life with a five-year survival rate of 35.8 percent.
But that’s still time that Nessler can have with her father, so she’s not giving up.
“It’s so important to keep going, and I couldn’t sleep at night knowing that I didn’t try everything I could.”
Ultimately, Nessler and her family are hoping for the much more optimistic prognosis that a kidney transplant would make possible. In the hope of being prepared for when Tom finds a viable donor and to help cover medical bills, Nessler began a GoFundMe account last February where nearly 150 donors have helped raise almost half of the fundraiser’s $20,000 goal. The money collected so far has been placed in a savings account intended for Tom’s transplant surgery, estimated to cost $150,000, plus a yearly cost of $20,000 in anti-rejection medications.
But it’s the fundraiser’s response that particularly strikes a chord with Nessler.
“A lot of people who donated were from Marlton, they were people I would say hi to in the hallways at school but didn’t necessarily know that well, which was really surprising and really nice,” she noted. “It was people from college, it was a ton of people from his (union) local, a ton of iron workers in general, people from different states. It was amazing. People I didn’t even know were reaching out to me, and I still get people emailing me about getting tested to become a donor, and a lot of them don’t even know my dad. You realize how generous people are and how many people are there for you. It definitely gave me a lot of faith in humanity.”
With a new kidney, Nessler said, her father could enjoy a much greater quality of life than dialysis allows, and the success rate is more than 85 percent. But the UNOS waiting list is more of a holding pattern than a promise, and it’s the Nesslers’ only choice since Tom’s two children have inherited polycystic kidney disease and various friends ultimately weren’t matches.
“He was officially put on the waiting list February 12 of 2019,” Nessler recalled. “He’s also on the deceased kidney list, which doesn’t have as good of an outcome as a live donor would. So for now, he goes to dialysis three times a week, four hours each session. You hear a lot of horror stories about how patients hate dialysis, and he hasn’t been doing that good on it.”
Which is why the search continues for a potential living donor, especially since the University of Pennsylvania has declared Tom a good candidate for a transplant after running a battery of tests.
Before the pandemic forced everyone to keep their distance and closed down most public places, the family had T-shirts made to spread news of their cause. The Nesslers had planned to wear their shirts with Tom’s blood type and an email address to contact in the hopes of casting a wider net for a potential donor. The public-facing shirts are a far cry from the taboo subject her father’s diagnosis was at first, and Nessler appreciates that her family has become closer and more willing to talk through difficult topics.
“No one wanted to bring it up because we all got so upset talking about it,” Nessler noted. “But once I started bringing awareness to it, it started becoming a more comfortable topic for us, so we’re able to talk about how we feel and what the next steps are without all of the anxiety and stress we had before.”
While Nessler said the family’s journey has come with tremendous and innumerable lessons, one of the most significant is how completely her opinion regarding organ donation has changed.
“When I first got my driver’s license, I was not an organ donor because, if anything happened to me, I wanted my kidney to go to my dad,” she explained. “Once I realized that my brother and I can’t donate our kidneys to him because we also have the disease, I immediately became an organ donor, which could save seven or eight other people’s lives.
“I don’t know if I would have signed up to be an organ donor before this — you don’t know until you experience something like that.”
Visit gofundme.com/f/new-kidney-for-tom-nessler to contribute to Tom Nessler’s GoFundMe account. Any potential kidney donors with Type O blood or individuals willing to spread the word about the Nesslers’ search for a matching kidney with a T-shirt are encouraged to email firstname.lastname@example.org.