Living Kidney Donor Match Sought for Branford's Clare Torelli
Clare Torelli is used to supporting her community, but now, she needs our help. Earlier this month, the Branford native was diagnosed with Stage 4 out of Stage 5 kidney failure due to a genetic disorder, Polycystic Kidney Disease (PKD). For several reasons, Torelli's best chance now is to find a living organ donor, and she's reaching out for help.
PKD is prevalent in Torelli's family and, sadly, recently caused the death of a nephew. Her son, Peter, also has the disorder, but its progression has been stabilized thanks a to new medication, for which her son participated in experimental trials. However, she doesn't qualify for its use.
"You have to be at a younger age to get on that medication," Torelli explained.
Torelli, 73, recently put out a notice to her friends on Facebook to help spread the word of her search for a living donor. While she recently qualified to be placed on the deceased organ donor wait list, the standard wait is 5 to 8 years, and those on the list can't exceed the age of 78.
"If you have a living donor, you can be any age," said Torelli.
Torelli made the decision to go public with her search after her doctor said a living donor would be her best option. The people she's hoping to find are those that would volunteer to get tested for four markers needed to find a match, including tissue and blood. Torelli's blood type is 0 negative. Those wishing to test for a match can contact the Yale-New Haven Hospital Transplantation Center's Center for Living Organ Donors by calling (866) 925-3897 to make an appointment (visit ynhh.org/organdonation to learn more).
Torelli said her brother, who also has PKD, received a living donor transplant from his wife 10 years ago, "...and he's doing fine."
The surgical procedure has advanced since that time so that living donors experience minimal recovery time and minimal scarring, she added.
The living-donor laparoscopic nephrectomy involves the surgeon's use of a laparoscope (a type of camera) to view internal organs and guide the removal of the donor kidney through a small incision below the navel.
"The process is also so streamlined now," said Torelli. "They remove the donor kidney laparoscopically; [and] they don't take my kidneys out, they just insert the new kidney in my lower abdomen. It's amazing, how things have changed in that ten years."
A self-described "farm girl" who just added a wild mustang rescue to her farm, Torelli (née Polverari) is among her family's third generation born and raised in Branford. The Branford High School (BHS) Class of 1967 alumnae has worked for the Branford Board of Education for over 40 years, and as a member of the BHS front office team since 1986. As an elected official, she's served Branford on the Representative Town Meeting for seven terms (and is running for her District 1 seat again in 2021). Torelli has been at home recently, but is looking forward to returning to work at BHS soon, she said.
"Right now, I feel fine physically, but my numbers are high," said Torelli, including those gauging creatinine.
Kidneys remove creatinine from the blood; as kidney function declines, creatinine levels rise. Torelli said her creatinine number shot up to 3.7 a couple of months ago, together with her blood pressure.
"If I'm a 4.0, I have to go on dialysis," she said. "Once you go on dialysis, your blood gets cleaned and [other filtrations]; but kidneys also produce enzymes, and when they no longer produce those enzymes, your body starts deteriorating."
She was put on new medications and a restricted diet, which brought the number down to 2.7.
"So I'm good now, but you never know when it's going to shoot up, and I don't want to take the chance of waiting," Torelli said. "And now, because the numbers are where they are, I'm eligible [for the donor wait list]; and I'm looking for a live donor because that can happen in a heartbeat. For a deceased donor, I'd have to wait at least 5 years, and then I'd be 78, and I'd be off the donor list."
So far, thanks to outreach on Facebook and some special radio media support from her friend John "Cadillac" Saville, four people have tested for a match, with no matches yet, she said.
"So I'm just trying to find all avenues of getting it out there," she said of her effort to spread the word.
Torelli said she's very grateful for Saville's support.
"John is a friend of mine, and he saw it on Facebook and called me to ask what he could do. He put a piece up for three days in a row, and I got calls," said Torelli.
While a match hasn't been found yet, if one is found, "...I'd go right to the top of the transplant list," said Torelli.
A former volunteer for MADD, Branford Compassion Club, the Community Dining Room, Walter Camp Foundation and Special Olympics, Torelli is known for her youthful energy and love of animals. In addition to Malibu, her mustang, her farm family includes a miniature pony named Joey; Annie, a donkey; goats Gabby and Bella; and Buns, a bunny.
As a mom and friend to many in this community, Torelli said she's been overwhelmed by the support of her family and so many others who have contacted her since she began sharing the news of her search for a living donor.
"The other day, my daughter called and I was crying, and she said 'What's the matter?'" said Torelli. "And I said, 'I'm so overwhelmed by people, well-wishers and prayers; just everybody being so generous with their feelings.' I don't know how to deal with it because I'm used to being the one giving help – I'm not used to accepting help. I've been so independent my whole life, that, 'Thank you' does not sound like enough. I wish I could say more, do more. It's really overwhelming."
Those wishing to test for a match to help Clare Torelli find a living kidney donor can contact the Yale-New Haven Hospital Transplantation Center's Center for Living Organ Donors by calling (866) 925-3897 to make an appointment or visit ynhh.org/organdonation to learn more.