By Sarah Brown
Lebanon Local
It’s been three years since Braulio “Sonny” Ulep was diagnosed with chronic kidney disease and he’s had three canceled surgeries since being placed on the donor list, yet despite these hurdles, the native Hawaiian continues to keep a sunny disposition.
Lebanon Local reported on Ulep in December 2020, describing him and his wife, Darlette, as “aloha-spirited” individuals who give and share in their community. Sonny donated bone marrow to a stranger in 2016, and the Uleps open their home to neighbors on Halloween for a Hawaiian meal.
As Ulep was adjusting to the news about his health in 2020, he said he had a line of people offering their kidneys, including his dentist and eye doctor, a Subway employee and a local politician.
“It’s amazing, just the love people showed me these past few years is crazy,” Ulep said.
We recently checked in on him for an update, and his story was like a virtual rollercoaster ride.
Ulep’s journey started in November 2019 when he received unexpected bloodwork results indicating he was in Stage 4 kidney failure with his kidneys functioning at 32%. What made the information shocking beyond the obvious was that he said he’d received regular bloodwork for years and was never informed his kidneys were in trouble, he said.
A year later, in November 2020, Ulep was placed on the kidney donor list, and four months after that, on peritoneal dialysis. By then his kidneys were functioning between 12 and 15%, he said.
In July 2021, Oregon Health & Science University alerted him to an available kidney and said he should expect a call the following day.
The call did come, but it was to inform him the kidney wasn’t good. But, according to Ulep, the doctor told him he was at the top of the list and should receive one “any day now.” Yet months passed with no more calls. Meanwhile, Sonny’s cousin, Roslyn Angel, tested as a match, so preparations began for a possible transplant.
In October 2021, Ulep got a call from OHSU. The woman on the other end, he said, asked if he’d been vaccinated yet for COVID-19.
“I wasn’t ready to take it yet because I wasn’t feeling well,” he said.
But he’d planned on scheduling an appointment for the vaccine after the holidays because he was told it would be required for a transplant. So that’s what he told her.
“The lady told me, ‘Absolutely not. You’re going to get your COVID vaccination immediately, or I’m taking you off the list now,’” he said.
Knowing it would take a while because he’d have to make an appointment, he told her as much, so she said she was going to remove him from the list. To make sure she didn’t, he told her he’d see what he could do. Despite his situation, pharmacists kept turning him away from getting a shot without an appointment, but Ulep said he was finally able to convince one to give him the Johnson & Johnson vaccine that day.
Then he called OHSU to tell them the good news, but, according to him, their response was disbelief.
“I went home and called up OHSU and said I got my vaccine, and she says, ‘I don’t believe you.’”
He pressed her to check his online medical chart and offered to bring his vaccination card the next day, but he said she refused both options and said she was removing him from the list. The next day, Ulep brought his card to OHSU and asked them to “please” not do that, yet the people he spoke to that day said they didn’t understand what he was talking about, assuring him he was still on the list.
When asked for comment on the case, OHSU Associate Director of Media Relations Sara Hottman responded: “Due to HIPAA (the Health Insurance Portability and Accountability Act of 1996, which protects sensitive patient health information from being disclosed without the patient’s consent or knowledge) rules, we’re unable to comment or acknowledge whether this individual is a patient without written authorization.”
Lebanon Local was unable to secure such authorization before press time.
To be sure, it was a frustrating moment, Ulep said, but he decided to let the matter go. A couple weeks later he received a letter from OHSU: He needed another vaccine because the Johnson & Johnson one wasn’t acceptable.
Incredulous, Ulep said he had documentation stating that any of the three vaccines were acceptable. She told him Moderna or Pfeizer were preferred. He later got a letter stating he would need a second Johnson & Johnson shot, so he complied. And to date, Ulep said he has yet another request for a third shot.
But the rollercoaster ride wasn’t over. In June 2022, a new OHSU coordinator was assigned to his case, and she had the task of informing him that he’d been removed from the donor list.
According to Ulep, she told him, “You never should have been taken off the transplant list and for some reason you’re off, and I can’t figure out why or who took you off the list, but I need your permission to put you back on.”
Ulep’s wife, Darlette, said the coordinator told them no one could be taken off the list until an actual surgery date was scheduled. For eight months the couple had been waiting for that “any day now” call about an available kidney.
“We were waiting the whole time, and we just thought (it was because of) COVID,” Darlette Ulep said.
Meanwhile, Angel was undergoing tests to confirm she could donate a kidney, and a transplant date was finally scheduled for August 2022. But another snag tripped them up, and the surgery had to be canceled. According to Ulep, a test revealed a concern about his heart, so doctors performed an angiogram, only to discover there was no problem.
The transplant was rescheduled for November, but, yet again, was canceled. This time it was due to Angel, who couldn’t get time off from work. Currently, Ulep’s kidneys are functioning at about 5 to 6%, and the transplant is scheduled for January.
Ulep said he doesn’t feel as poorly as he expected to at this point, though he does experience nausea sometimes and suffers from back pain.
“I keep myself as active as possible and try to be as positive as I can,” he said.
Last year, the family began helping at the concession stand during sports games at their son’s school in Corvallis. Ulep began serving traditional Hawaiian food and raised about $6,000 for the school from his sales. Though the athletics department was grateful, Ulep was even more so.
“Allowing me to do this, you guys gave me purpose,” he told them. “You don’t realize what you did for me by allowing me to do this. I, in the beginning, was almost starting to feel helpless because I couldn’t provide for my family. I couldn’t work, I couldn’t do the things that I love to do. For me to be able to be out here and serve everybody and just see the expressions on peoples’ faces eating and smiling, and you guys allowing me to do this gave me so much joy.”
Despite his health, Ulep continues to serve at the concession stand and awaits his January surgery. Darlette explained, however, that if it’s canceled for any reason, they’ll no longer pursue the transplant with Angel.
“We’re just going to cancel the cousin and take the first kidney that comes along,” Sonny said. “If for some reason all of this goes south, it’ll be quicker and easier for me to take the first kidney (from a deceased donor).”
As the couple breathes a sigh of relief and waits for January, they have one other obstacle: money. The family’s insurance covers much of the surgery, and donations have supplemented what they’ve been through so far, yet several costs for January have them scratching their heads to figure out how they’re going to pay for them.
Cue one last dive and spin on the rollercoaster. Previously, the hospital required the couple to live within half an hour from the Portland location so that follow-up tests could be performed. Since the Uleps live further away than that, they qualified to apply for financial aid for living arrangements in the city. But recently they received a call from the hospital stating they can now stay within 90 miles for a follow-up, which means Ulep can recoup from surgery at home, and they would qualify for aid if they live further than 90 miles. But the Uleps live in Lebanon, 89 miles from the hospital. Thus, no aid.
So the Uleps are hosting a fundraiser from 4 to 8 p.m. Saturday, Nov. 12, at the River Center, 3000 S. Santiam Hwy. Hawaiian dinner, silent auction, Polynesian entertainment, live music. Tickets $25. Call 541.248.4261.
Their goal is to raise $10,000 to cover hotel costs for Ulep and his cousin for a month, food and transportation costs, and airfare from Hawaii for the cousin and his mom (who will take care of their son in Lebanon).
“If we get a clear bill of health saying they’re good and they think it’s safe for them to go home (early), then we will,” Darlette said. “I didn’t want to come home and be an hour and a half away and be putting people with major surgeries (at risk). I told him I will somehow figure this out because we are not leaving Portland for at least two weeks.”
As the rollercoaster ride nears a conclusion (fingers crossed), Sonny Ulep continues to smile and laugh as he shares his story.
“I don’t give it much thought, honestly,” he said. “I just try to live every day like nothing’s wrong.”
He credits God as “having his back,” and believes he’ll get a new kidney when it’s the right time. Meanwhile, his neighbors don’t hesitate to help him when needed, and Darlette assists him with his dialysis every two hours.
“One of the best things about getting a kidney is we’re going to get a full night of sleep,” Darlette said. “We haven’t slept in a year and a half.”