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In search of a match

Jim Hodges, who has polycystic kidney disease, hopes to find a kidney donor

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Jim Hodges, 53, has a genetic condition called polycystic kidney disease. He recently started dialysis, and is on a waiting list to receive a kidney transplant. "Things like this can happen to anybody. Anybody can become ill at any time," he said. "I think it's important to realize that we're not here for a long time. Spending your time reminding people that you care about them, and focusing on the good things in life are the most important things."

Now, more than ever, Jim Hodges has a deep appreciation for the simple things in life.

The 53-year-old east Vancouver resident would like nothing more than to be able to spend a weekend working in his yard, cleaning out his garage, and doing chores around the house.

These tasks, while mundane to most people, have become impossible for Hodges due to his health issues that have become progressively worse during the past two years.

Hodges suffers from polycystic kidney disease, a genetic condition that causes benign cysts to grow on the kidneys and disrupt the organs’ filtering capabilities.

“There are a lot of people that go undiagnosed,” he said of PKD. “You can have the disease and live your whole life without any ill effects and without having severe kidney failure.”

Living kidney donation

City of Camas Project Manager Jim Hodges, a patient at Oregon Health and Science University in Portland, has been on the kidney donation waiting list for more than a year.

While about a dozen friends and family members have gone through the process of being evaluated as potential kidney donors, for various reasons none have been approved.

Although being in the spotlight is outside of Hodges’ comfort zone, because his condition — polycystic kidney disease — is worsening he is reaching out to the community in the hopes of finding a matching donor.

“Through my illness I’ve gotten acquainted with several people in the area that are either waiting for a kidney or know someone that is,” he said. “It’s a much more common problem than people might first suspect, and it’s an awkward situation to be in. There’s no book of etiquette for seeking a kidney donation, and OHSU transplant programs rightly encourage patients to be open about their circumstances with friends and family. But each person has different comfort levels about how to get the message out.”

According to the National Kidney Foundation, there are approximately 100,100 people awaiting kidney transplants in the United States. Fewer than 17,000 will receive one each year. Every day, 13 people die waiting for a kidney.

Most people have two kidneys, but it is possible to live with only one.

Potential living donors are volunteers who are physically healthy, do not have kidney disease, and have a blood type that is compatible with the recipient of the donated kidney.

Donors do not have to be a blood relative of the recipient, and they do not need to be to be the same race, age or gender.

According to OHSU’s clinical transplant services department, a living donor is preferred.

“Being able to receive a transplant from a living donor may allow recipients to be transplanted faster and these transplants tend to last longer than transplants from a deceased donor.”

For more information about living kidney donation, visit www.ohsu.edu/xd/health/services/transplant/kidney/living-donor.cfm; email livingdonation@ohsu.edu; or call (503) 494-8500.

To contact Hodges about being evaluated to become his kidney donor, call him at (360) 909-8031.

This has not been the case for Hodges. He was first tested and diagnosed 15 years ago after discovering that his mother, now deceased, suffered from PKD. It wasn’t until 2014 that he became symptomatic.

“What I notice and what my family notices is that I’m very fatigued,” Hodges said. “I sleep more than I’d like to and I’m not able to do as much as I’d like to.”

It’s been a difficult reality for Hodges to accept.

He and his wife, Mendy, have a blended family with five grown children. For the past 26 years, he has worked for the City of Camas. Currently a project manager in the engineering department, he enjoys his work and it is his priority. Hodges has learned to ration his energy.

“My focus is to be productive at work and do the best I can while I am here,” he said. “With that in mind, my wife does everything else. She takes care of our household. It’s been very hard.”

Hodge’s kidneys are now 8 to 9 percent functional. A patient at Oregon Health and Science University in Portland, he watches his diet and must take a variety of medications, many of which are to control his blood pressure. He recently began a treatment called peritoneal dialysis.

This technique involves the insertion of a port in the abdomen that when connected to a catheter allows the stomach lining to be used as a natural filter.

“You put the solution into your abdomen and it pulls the toxins out of your body,” Hodges said. “You do that over the course of the day, a few times. It’s something that’s very portable that you can take with you. Dialysis is something you can do in the meantime, to get you by.”

What Hodges is ultimately hoping for, however, is to receive a new kidney from either a living or deceased donor. He has been on the donation candidate list for 1.5 years.

Hodges is in a situation he could have never imagined.

“It’s just an unusual thing to need an organ from somebody,” he said. “It’s awkward. I’m not a sales guy. I’m not even a Facebook guy.”

According to OHSU’s transplant services department, living donation is the preferred option because the transplants typically last longer — up to 20 years. Potential donors are healthy, and have a blood type that is compatible with the recipient of the donated kidney.

“Getting a transplant from a living donor is much faster — usually a matter of months — and can last longer than a deceased donor transplant,” according to information provided by OHSU. “Sometimes a recipient can avoid dialysis all together if they have a living donor. Living donors do not need to be family members or ‘genetically related;’ transplants from friends or Good Samaritans do as well as many transplants from family members.”

About a dozen of Hodge’s friends and family members have already been tested as potential donors, with no luck finding a match so far.

Hodges tries to keep the disappointing results in perspective.

“I don’t think about it that much,” he said. “I try not to get too high or too low. I just keep chugging along.”

Potential donors go through rigorous screenings.

“If you’re healthy enough to be a donor, you’re very healthy,” Hodges said.

He remains hopeful that his perfect match will be found.

“Somebody doesn’t have to die,” he said. “There are a lot of people out there living full lives with one kidney, either because they have donated one or they have been the recipient of one.”

A perfect match

Ironically, one of those people can be found just a short walk from Hodges’ office at City Hall.

Sarah Fox, a senior planner, is a walking example of successful organ donation. In 2010, she gave her right kidney to her best friend of 15 years who had been diagnosed with a rare and aggressive form of kidney disease.

“I was the first person tested and I was her perfect match,” Fox said. “Obviously we’re not related, but they said we were a better match than twins would be.”

Before being cleared to have the surgery, Fox said she went through a slew of medical tests and interviews to determine that she was physically and mentally fit.

She describes her family members, including her parents and two children, as incredibly supportive. Some friends and coworkers, however, questioned Fox’s decision. They wondered, what if one of Fox’s children needed a kidney someday? What if one of her kidneys was destined to fail?

“I just felt like there were way too many things in alignment not to do it. That doesn’t happen every day,” she said. “To say ‘no’ seemed pretty ridiculous — to let that kind of fear rule your life. If people just knew how many people’s lives could be saved by donating a kidney, I think they would see things differently.”

After a successful nephrectomy at Legacy Good Samaritan Medical Center in Portland, Fox spent four days in the hospital. After two weeks she went back to work part-time, and a week after that resumed her full time schedule.

Her friend who received the kidney saw improvement immediately.

“It went to work right away inside of her,” Fox said.

Because the kidney recipient’s insurance pays for both procedures, Fox was not burdened with any financial obligations related to the surgery.

“The other insurance pays for everything,” Fox said. “I didn’t have any expenses.”

Later that year, she went on to run the Hood to Coast relay and climb Mt. St. Helens.

Six years later, the only reminder of the surgery is a scar on her hip. And, most importantly, her best friend is still alive.

“I don’t think it’s something anybody would ever regret,” she said of kidney donation.

Fox has been a resource to several of the people who have tried to be a donor for Hodges.

“It’s really nice having someone here who’s been through that,” he said. “Sarah has been very helpful to me in that she obviously has this first-hand experience. When people have questions that I don’t have the answer to, I can tell them I know someone who does.”

In search of a happy ending

Hodges has been closely following the journey of a Clark County man who was recently the recipient of a kidney donated by someone he had never met.

Cascade Park resident Scott Warren’s story was first featured in The Columbian newspaper in June 2015, when he was on dialysis three days a week and aggressively searching for a kidney donor.

The article described the 46-year-old’s approach as a “campaign.”

Warren created a Facebook page, made bumper stickers, posted signs on his car, and created videos he posted online, all describing his plight to find the person who would be his match for a new kidney.

His efforts paid off. In May 2016, Warren received a kidney donated by a woman from Portland who had read his story. A follow-up article was published on Oct. 3, following the successful transplant procedure. Warren is now an advocate for others who have kidney disease and are in need of a transplant.

Hodges has that newspaper article taped to his office door. Describing the story as uplifting, he is happy to see Warren’s life change for the better. Hodges is crossing his fingers that his future will involve a similar outcome.

“I love a story with a happy ending,” he said.