PORTLAND, Maine — Thiwat Thiwat got the phone call he was waiting for Wednesday afternoon and promptly announced that he’d drive himself home from Maine Medical Center on Thursday, just as soon as he’s released.
At about 2 p.m. Wednesday, Thiwat, 21, a former basketball standout on the Deering High School 2012 state championship team, answered his cellphone from his hospital bed and Sara Lund from U.S. Sen. Susan Collins’ office told him he will once again be covered by MaineCare on Thursday — retroactive to May 1.
“She said the card would be in the mail tomorrow,” Thiwat said. “The whole transplant and the [anti-rejection] medication will be taken care of. It’s like a bunch of weight was lifted off.”
Thiwat learned on May 23 that his kidney function had drastically declined. He also discovered his MaineCare health insurance had ended when he turned 21 in October 2015, and that without insurance he could not be placed on a kidney transplant list — or receive lifesaving dialysis treatments as an outpatient.
Thiwat had already enrolled in summer classes at the University of Southern Maine. He needs the classes if he has any hope of transferring to — and playing basketball for — the University of Maine this fall as a walk-on.
He hopes to be in his seat on Friday to catch the end of the first week of classes at USM.
Cindi Taylor, who has been Thiwat’s second mom since he was in her English Language Learner kindergarten class shortly after arriving in the United States from South Sudan in 1999, mobilized friends and family members, who wrote endless emails and made phone calls in an effort to secure insurance — and medical treatment — for him.
Collins spokeswoman Annie Clark confirmed Wednesday that staff members were able to expedite paperwork to get Thiwat the coverage effective May 1.
She declined to comment further because of confidentiality except to say, “There was great support in the community to help Thiwat, and people really pulled together. Sara worked cooperatively with all the parties involved. Maine Health was very helpful as was Patricia Condon in the governor’s office. Everyone was determined to fix this problem.”
The phone call was the first good news Thiwat has had in a couple of days. In addition to daily dialysis sessions that last four hours and leave him exhausted, earlier this week Thiwat’s hemoglobin levels dropped, and his nephrologist feared he might need a blood transfusion, Taylor said.
Thiwat’s physicians told him he could only be released to outpatient dialysis after he’d built up to “full strength sessions, three times a week,” she said.
But that was only the medical requirement.
Without insurance, Thiwat was confined to his bed at Maine Medical Center, where he was receiving free care from the hospital as an inpatient. (The hospital had since agreed to pay for outpatient dialysis, Thiwat said this week.)
Thiwat came to the United States when he was 4 years old with his father, an uncle, and several siblings and cousins. The family left war-torn Sudan and spent time in an Ethiopian refugee camp, where Thiwat was born, before coming to Maine.
He was diagnosed with kidney failure in 2012 while a junior at Deering High School. Thiwat was recruited to play basketball at Rhode Island College for Bob Walsh, now head coach at the University of Maine, who at the time coached at RIC.
Thiwat struggled with declining health through his first year in college and eventually transferred to Southern Maine Community College to be closer to home. Recently he had begun to feel worse, and last week, he was admitted to Maine Medical Center after he learned he was nearing kidney failure.
Because he was no longer covered by MaineCare or any other insurance, he couldn’t get on the transplant list.
After Thiwat ended his phone call with Collins’ office on Wednesday, he called the Maine Transplant Program to start the process.
“They got excited,” Thiwat said.
He’s also spoken to his USM professors, he said, who “know what’s going on and know the situation.”
He hopes to learn after dialysis on Thursday that he can go home and begin a three-day-per-week outpatient dialysis regimen.
“I’m so grateful,” Thiwat said.
Taylor said the two are overwhelmed by the outpouring of love and support they’ve received in the past week. A young African woman in Australia asked how she could donate, Taylor said, and a woman in South Carolina asked if she could add Thiwat to her insurance.
“I heard from a 74-year-old man who wanted to donate his kidney,” she said. “So many people are praying for him. They want to know how to help.”
Taylor is holding off on any kind of fundraising until she speaks to a lawyer, but for now, she encourages people to visit the Maine Transplant Program website to learn about kidney donation.
And Taylor said just because Thiwat has coverage doesn’t mean the MaineCare system isn’t broken.
“There are so many kids out there who don’t know the ropes,” she said. “We were lucky that Thiwat makes a good story, but not everybody makes a good story. What about the kid who got in trouble with the law and lives on the street … you shouldn’t have to be a good story to get help … It shouldn’t take Susan Collins to call someone to get that.”