Gotta have faith: Church hosting charity event to find kidney donor for member

  • Terence Kalani Benanua and his wife, Linda, find inspiration at their church, New Hope Waimea. Their congregation will band together at a “Hope for Kalani Ho’olaule’a” charity event Sept. 22 in hopes of finding a kidney donor for Terence. (GEORGE FULLER/SPECIAL TO WEST HAWAII TODAY)

WAIMEA — At 6 feet 2 1/2 inches tall, with broad shoulders and a sturdy frame, Terence Kalani Benanua spends a typical weekday driving a semi-trailer truck, hauling and sometimes lifting heavy equipment as part of his full-time job at the Hawaii Department of Transportation.

No one would suspect that each Monday, Wednesday and Friday he heads over to North Hawaii Community Hospital (NHCH) after work for more than five hours of dialysis.

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In August 2016, Benanua’s doctor noticed one of his kidneys wasn’t working properly. By March 2017, only 7 percent of the kidney was functioning, which prompted dialysis.

Now a year and a half later, Benanua diligently continues dialysis, but his name still isn’t on the kidney transplant waiting list, despite diminished function now in both of his kidneys.

“I need to meet the criteria from the national transplant network of losing 30 more pounds,” he said.

Benanua has already lost 80 pounds since the original diagnosis.

For patients to get on Queen’s Transplant Center’s kidney donor list, “their BMI (body mass index) must be 35 or lower, based on CDC (Centers for Disease Control and Prevention) regulations,” Cedric Yamanaka, director of corporate communications at The Queen’s Medical Center, said Friday.

“The national list threshold is frustrating for Hawaii patients with large frames to meet the criteria,” Dr. Curtis Lee, Benanua’s nephrologist in Hilo, said in a phone interview Thursday.

To deal with the fear and pressure of waiting to be added to the transplant list, Benanua said he finds himself at peace “singing in God’s presence,” leading the music each week at his church, New Hope Waimea Christian Fellowship.

From 10 a.m. to 5 p.m. Sept. 22, his congregation will host “Hope for Kalani Ho’olaule’a” — a community-wide benefit for Benanua at the church. One of Hawaii’s most popular and beloved comedians, Frank De Lima, will perform.

“New Hope Hilo will open our day at 10 a.m. and then five bands will play after that. We’ll also have arts and crafts and food booths around the property,” said Margaret Tilini, New Hope’s office administrator. “The vision was to support the Benanuas financially, and more so to find him a kidney or two.”

“We’d really like to make this event an awareness to our community that in situations like this, you’re not walking that road alone. There are resources out there to help for any kind of transplant or sickness,” she added.

Born and raised on Lanai, Benanua is 78 percent Native Hawaiian, and a mix of Spanish, Chinese and Irish. While in his mid-20s, he spent two months in the hospital with rheumatic fever. Around the same time, he developed high blood pressure, and diabetes a year or so later.

Now 48, Benanua is the first person in his family to suffer from kidney failure. He, his wife and their five children moved to the Big Island in 2007.

Kidneys are a pair of bean-shaped organs about the size of the patient’s fist. Located near the middle of the back just below the rib cage, they work as “trash collectors,” processing about 200 quarts of blood daily to sift out two quarts or so of waste products and extra water, according to the National Kidney Foundation.

“When not functioning properly, they aren’t able to balance the electrolytes and minerals that are controlled to a narrow range of healthy levels,” Dr. Lee said. “The other thing kidneys do is regulate body water, so when those two primary functions aren’t working properly, dialysis handles that. They also regulate production of a hormone that stimulates blood cell production.”

Benanua’s wife, Linda, sees emergencies daily as a technician in the ER at NHCH.

“When I first found out my husband needed a kidney transplant I was shocked,” she said. “Then I prayed because I couldn’t handle it myself. My first step was trusting God. I knew I needed to be there to support him. I was weak but now I’m strong.”

Linda keeps a close eye on her husband, making sure he takes his medicine, gets his blood count and blood pressure right, gets to all of his dialysis appointments and continues to lose weight before he can get the kidney transplant.

“Linda every day encourages me to eat right,” Benanua said. “My children, other family members, church ohana and friends at work have also been a great deal of support to me.”

His 24-year-old daughter, Leineale, who works as a spa attendant at the Fairmont Orchid, helps out whenever possible.

“I mow the yard, and take care of the dog and animals,” she said. “I believe my dad will have a new kidney. I also remind him not to eat fast food, pork and fatty meats. I encourage him to eat more salad constantly, and to exercise and walk.”

Currently, there are 320 patients on Queen’s Transplant Center’s kidney waiting list, Yamanaka said. Three of them live on the Big Island, according to the dialysis department at NHCH. Two others — including Benanua — are waiting to be added to the list once they meet the criteria.

“My body gets tired, but good support from my workmen, family, wife and the church keeps me moving forward,” Benanua said. “I have a good supervisor and crew who understand. When I went to have a shunt put in my arm for dialysis, I didn’t have enough vacation time so my crew and some in Hilo pulled together and donated some of their sick time.”

The average cost for a single kidney transplant in 2005 began at $210,000, according to the National Kidney Foundation. Benanua, fortunately, has health insurance from HMSA.

The wait for a deceased donor can be five years, and in some states it’s closer to 10. Eighty percent of people on the waiting list are on dialysis.

On average, receiving a kidney transplant can double someone’s life expectancy. Transplant success rates increase when organs are matched between members of the same ethnic background.

Living donations can come from a family member, a loved one or even a stranger, and are the fastest life-saving option for many who face a long wait for an organ transplant.

“We have resources from the Kidney Foundation and the Legacy of Life, in hopes that people may want to be tested to become a possible donor for our church member,” Tilini said. “We will take names and collect their contact information at the event later this month to start a list of prospects who are willing to be tested even before Terence becomes an eligible candidate.”

Benanua’s wife said they’re praying for the right donor.

“I’m wanting to give one of my kidneys to my husband if my criteria matches him,” Linda said. “It begins with a blood sample. If I’m a match, it shall be done.”

Benanua’s blood type is AB. Emory Transplant Center in Atlanta operates a Living Donor Kidney Program. According to their website, if a recipient is AB, a donor can be A, B, AB or O. A second test must be performed called a crossmatch. A negative crossmatch result signifies the recipient does not have antibodies against the donor’s kidney and he or she could be a potential donor. Emory’s policy provides for the screening of up to 10 potential donors per recipient at a time.

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Anyone interested in possibly becoming a living kidney donor for Benanua can contact Linda at 430-9410. To speak with a transplant coordinator at Queen’s Transplant Center, call 691-8897. For details on the National Kidney Foundation of Hawaii go to https://kidneyhi.org/. Additional information can be found at www.emoryhealthcare.org/centers-programs/kidney-transplant-program/living-donor.html.

Info: Tickets for New Hope Waimea’s Sept. 22 benefit are $10 in advance or $15 at the door. For questions, call 885-5510.