Jessica’s Transplant: A Story of Giving and Receiving

 

 

 

At the center of this story is Jessica: a 31-year-old businesswoman, mom, former cheerleader, and kidney donor.

Add to her story a cast of family members: stepmom Elisabeth, older sister Maile, father Richard, two-year-old daughter Lucia, and husband Lance.

About 20 years ago, Maile’s kidneys failed and she needed a transplant. Father Richard donated a kidney. Unfortunately Maile’s kidneys failed again after a few months. At that time, doctors were uncertain what made the healthy donated kidney fail, and Maile went on dialysis.

Seven years later, Jessica, who was 18 at the time, donated a healthy kidney to her sister. Three years after that, the healthy organ failed, again for an unknown reason.

Fast-forward to 2013 when Jessica began facing something similar to what her sister endured, failure of her remaining kidney.

As stepmom Elisabeth reflects: “Your children do everything you hope they would do: go to college, find a good job, get married, have children…and then this happens.”

A rare disease is uncovered

Testing for Maile and Jessica showed that the disease ravaging their kidneys was a rare genetic blood disorder known as aHUS (atypical hemolytic uremic syndrome). Only about 300 cases occur in the United States, and it’s usually seen in children.

Because it’s a genetic disease, even such a rare condition as aHUS could strike twice in the same family.

Literally from a hospital bed in her hometown of Reno, Nevada, Jessica’s web search kept bringing her to the aHUS research of Carla Nester, MD, a pediatric nephrologist at University of Iowa Children’s Hospital.

“I e-mailed Dr. Nester and got a personal response from her within 10 minutes,” Jessica says. “That’s a testament to the kind of people at Iowa and the care they have for their patients.”

Iowa via Los Angeles

Insurance coverage would only allow Jessica to pursue specialty treatment in her region, in this case at the University of Southern California in Los Angeles.

“But my doctor in LA knew the team in Iowa and they communicated about my case,” Jessica says. “That was awesome.”

Jessica’s treatment protocol involved the use of Eculizumab, a drug that doesn’t cure the disease but that fights off the kidney-damaging symptoms and allows patients like Jessica to have a kidney transplant.

Jessica’s insurance would allow her to travel outside her region for transplant care. When she was well enough to be evaluated, she made the trip to Iowa City.

The Iowa approach to transplant

The evaluation visit at Iowa couldn’t have gone smoother, she says.

“The people at Iowa are the most responsive physicians I’ve ever dealt with. Every test result came back in a timely manner. The entire process is so streamlined.”

Long odds were going to affect Jessica’s family once again. As Jessica faced the prospect of being on a waiting list for a deceased donor kidney, members of her family were tested to see if a live kidney donor would match.

It’s a match

The surprising result was a compatible match with her stepmom, 66-year-old Elisabeth.

“It was almost like the universe aligned,” Jessica says. “We’re not blood related, but she is my mother, who raised me as her own from when I was three. It’s amazing that she was a possible live donor, as if it was the way things were supposed to happen.”

But it wasn’t a slam dunk. Jessica had second thoughts.

“When you’re taking an organ from someone you love, the thought of putting her at risk makes it a hard thing to do,” Jessica says.

But as a kidney donor in her sister’s case, Jessica recalls that side of the equation, too.

“For anyone who has to watch a loved one go through the pain and suffering of a terminal illness, you love them so much you just donate without question.

“As hard as it was to take an organ from my mom, she had the exact same mentality about it. She did it without the blink of an eye.”

“If you love somebody, there’s no question that you want to donate,” Elisabeth says, “especially when they’re at a young age and you want to see them feeling better.

“I assured her that nothing would happen to me at all. I am tough and strong. Now, with my kidney inside her, the poor child is maybe going to take on some of my personality.”

Thank yous all around

 

 

 

Ten days out from their transplant surgeries in February 2014, mom and daughter took part in a video interview, where they said their thank yous to each other, to their University of Iowa medical team, and to family and friends who helped get them through it all.

For Jessica, it was an opportunity to reflect on the life that her mother’s kidney now affords her.

“I try to live my life as one of acceptance,” she says. “When an illness like this happens, you take a moment to grieve and be sad and then move forward.

“I have a husband, parents, and a daughter who need me. This transplant has given my family and me an opportunity that’s irreplaceable.

“Every day I’ll thank my mom for the rest of my life. She’s given herself to me as a daughter.”

Members of the family

  • Jessica Ferrato, mom, daughter, wife, past organ donor, recent organ recipient
  • Elisabeth Young, mom, wife, recent organ donor
  • Richard Young, dad, past organ donor
  • Maile Robb, sister, past organ recipient
  • Lucia Ferrato, daughter and granddaughter, glad to have mom and grandma well and back home
  • Lance Ferrato, husband, “the definition of unconditional love,” according to Jessica