October 31, 2014

Topangans Unite to Help Cindi

 

While waiting for a kidney, Cindi Hilfman gets a little help from her friends.

Call it Karma, destiny or fate.

Greg and Cindi Hilfman always knew they were meant to be together after meeting by chance 20 years ago at an experiential seminar in South Dakota.

PHOTO BY ANNEMARIE DONKIN

Topangans Unite to Help Cindi

Greg and Cindi Hilfman of Topanga in 2006. Due to a rare genetic condition, Cindi desperately needs a kidney transplant and her husband, Greg, is the most likely donor.



Cindi had recently graduated in 1988 with a master’s in physical therapy from the University of South Dakota. Greg was a keyboardist for the Bangles and Air Supply and lived in Topanga.

“I met him and that was it…it was a chance thing, we both were there as part of grief therapy,” Cindi said. “We talked on the phone and one year later he came and got me.”

Yet, perhaps another reason for their bonding may finally have emerged. Cindi was born with a rare genetic condition called medullary cystic kidney disease that creates large stones, which she is constantly passing. The stones damage her kidneys and create bacterial infections.

There is no cure and as a result of a life on a constant IV drip of morphine and antibiotics, she now has resistant bacteria in her left kidney that is becoming life threatening. Untreated, it usually progresses to end-stage kidney disease. In order to stop the pain and infection, both kidneys need to be removed and the search for a live donor is on.

“I have to take care of myself. I put in my own IVs on a central line,” Cindi said. “You either do it yourself, become an inpatient or have a nurse; but in school I took all the same classes the doctors took except pharmacology.”

Despite her condition, Cindi pursued a high-level career as a personal physical therapist to actors and athletes, even appearing on the cover of Sports Illustrated.

She toured with pro golfer Rocco Mediate during his comeback tour in 2008, when he came within one shot of beating Tiger Woods in the U.S. Open.

As recently as February, Cindi was still out on the course with Mediate, inspiring and coaching him and watching his every move to guide him through the Northern Trust Open.

Never far from her IV poles, even when touring with the PGA, the petite brunette credits her long-time doctors for keeping her alive and working.

“Dr. Morton and Dr. Gordon at St. John’s allowed me to have a career; it worked great for 43 years,” she said. “I have to go to St. John’s every week for a blood panel.” She always knew the day would come when she’d need a new kidney.

After being rejected for a transplant by most medical clinics across the country, including the Mayo Clinic, Cleveland Clinic and Cedars Sinai, the Living Donor Team at the UCLA Kidney Transplant Center finally accepted her.

Yet she became increasingly frustrated with UCLA as they slowly tested dozens of potential matches; each one took about a month.

After testing her son and other relatives — because they share the same rare blood type — Cindi’s donor may be her very own “incredible” husband, Greg. In donating his kidney, he is able to give Cindi the ultimate gift — the gift of life.

Currently, he is undergoing the final phase of donor testing and hopes to receive the go-ahead to begin preparation for the surgery.

“It’s a wonderful thing,” Greg said, “and in most cases, they are able to extract the kidney with laparoscopic surgery that requires only a one-night hospital stay.”

Prior to receiving a new kidney, Cindi must first have one of her infected kidneys removed and undergo intensive dialysis to sterilize her entire system.

Overall, the cost for her treatment, surgery and aftercare is prohibitive. Her illness has put Cindi in the hospital at an increasingly alarming rate — 50 days last year alone. She has given up her business and medical bills are skyrocketing.

“I have always worked and supported myself, but I knew this day was coming,” Cindi said. “I still work at the Veteran’s Administration part time to keep my insurance, but our co-pays are out of hand…I had to spend $9,000 between January and March on IV medication alone. I haven’t seen the figures for April, May and June.”

Therefore, the healer, physical therapist, self-described hippie gal, peace- loving wife, mother and sister who always takes care of others first, now could use a little help from her friends.

Friends and Family

“Thanks to all of my beautiful little transplant fairies, I am not alone in this battle,” Cindi said. “I couldn’t ask for more.”

She is referring to some true blue Topanga heroes — her long-time friends Ruth Lundi; singers Catherine McClenahan and Janis Liebhart; and neighbors Rick and Callie Moos who help take care of her.

They have keys to the door and come to help by cooking, cleaning, caring for her, taking her shopping or to doctors’ appointments.

“Callie Moos and Ruth have been over a lot, Catherine and Janis of course,” Cindi said. But even her close friends are amazed at Cindi’s great attitude and warm, caring smile with everyone she encounters.

“She has a lovely, positive, can-do attitude that belies the seriousness of her condition,” Lundi said. “She’s very sick, in and out of the hospital at an alarming rate, and her IV pole is ever present, even if we just go to Froggy’s for dinner.”

But Cindi considers herself to be the lucky one and credits her “fabulous” children with always being there caring for her—son Michael Bruning, 18, just completed his freshman year at the University of South Dakota; stepson, Abraham, 25, and stepdaughter, Biba, 30, who lives in New Jersey.

“They are extraordinary kids,” Cindi said. “Something snapped in them over the years. I don’t have to ask them to do anything; they just jump in.”

Cindi also credits Greg’s mother, Clara “Baba” Hilfman, for being “the perfect mother,” staying with her when Greg was on the road.

A Friend Raiser

“We’re all here to help each other and we’re here specifically to help Cindi,” Lundi said. “To know her is to love her and we do!”

They are pooling their talents to create fundraisers to help defray Cindi’s medical expenses until her long-term health insurance kicks in at the end of summer.

“Catherine McClenahan, Janis Liebhart, Donna McDaniel Pavlock and I have split the duties and are putting together some fab events,” Lundi said.

Lundi said fundraising like this is near and dear to her, as her family was the recipient of many fundraisers when her oldest son, Eric Holzem, got cancer. “Lots of good folks had benefits for us; if not for that, we would have lost everything.”

Lundi jumped in and took the lead. They persuaded Eliza Jane Schneider, actor and Topanga resident, to donate a performance of her award-winning, politically charged, “Freedom of Speech.”

Additionally, Greg said that when the Bangles learned of Cindi’s need, they offered to donate a performance and promote her cause on their Web site.

“The support is just incredible,” he said. “People have come out of the woodwork. It’s just insane how the girls in the Bangles got involved. One of Susanna Hoff’s sexy skirts sold online for a $1,000 on Ebay, and we are getting donations on their website from people all over the world – $20 and $25 from people who probably can’t afford it.”

For the second fundraiser, Ellen Geer and Peter Alsop donated the Theatricum Botanicum for an evening performance by the Bangles on June 30. Mc Clenahan and Stacie Bush, who sing at Froggy’s “Scat Salon,” will be one of the opening acts.

“People are pretty astonishing; I think it’s going to be amazing,” Lundi said. “Both of these events had a lot of response.”

Meanwhile, Cindi is just waiting for the chance to get through the testing process and receive a new kidney so she can get off the IV drips, get back to work and to the rest of her life.

“I have been made speechless by all of this,” she said. “The people who live here are amazing with their incredible generosity. I don’t know anywhere else like this.”

“Freedom of Speech” at Froggy’s

Thursday, June 24, 6:30 p.m. – Freedom of Speech at Froggy’s: Eliza Jane Schnei