PORTLAND, Maine — More than two years after fighting to gain MaineCare coverage to be added to the transplant list for a new kidney, a former Deering High School basketball star continues to wait for that phone call that a kidney is available.
Thiwat Thiwat, now 23, hopes the call will come in time for him to finish his college career playing basketball for the University of Maine, or even the University of Southern Maine. He has completed about half the courses he’ll need for a bachelor’s degree at Southern Maine Community College, all while spending three nights a week hooked up to a dialysis machine.
“Honestly my body is responding pretty well to it,” he said. “I don’t feel crappy. There are days it’s like, ‘What the hell, my body has kidney disease.’ But it’s a process. At times you want to live your life your way, but you have to go to dialysis.”
While dialysis is keeping him alive, Thiwat’s frustration is mounting, despite the knowledge that the average wait time for a kidney transplant is five to six years.
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.
A basketball standout on the Deering High School 2012 state championship team, Thiwat was diagnosed with kidney failure that same year.
He learned in May 2016 that his kidney function had drastically declined, and 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 life-saving dialysis treatments as an outpatient.
Through the assistance of Sen. Susan Collins’ office, Thiwat obtained MaineCare coverage and began outpatient dialysis.
Thiwat had been recruited to play basketball at Rhode Island College for Bob Walsh, who left Rhode Island in 2014 to become head coach at the University of Maine, where he coached until earlier this year. Thiwat continues to hope he can play in Orono, or at USM, as a walk-on.
“I still have my eligibility and I’m in contact with Coach [Karl] Hendrickson [at USM] as well, in case Orono doesn’t work out,” he said.
But the clock for that dream is ticking. Although he acknowledged that the Maine Transplant Program told him that the wait would likely be five to six years for someone with his blood type, he said that he is frustrated that the Maine Transplant Program hasn’t processed paperwork that people have told him they’ve submitted.
“I don’t want to wait five to six years,” he said. “I had a lot of people interested in being donors. … First it was three months, then it was six months, then it was, ‘Just be patient.’ I was like, ‘Are you guys really working?’”
Dr. John Vella, head of nephrology and dialysis at Maine Medical Center and the medical director of the Maine Transplant Program, said Friday that the average wait time for a kidney in his program is three years, but may be longer for specific blood types. On average around the country, the wait time is five years, he said.
Due to patient privacy laws, he declined to speak about any particular case, but said in general, frustration is part of the process.
“Patients with advanced chronic kidney disease, especially people on dialysis, are chronically ill, and attending dialysis is keeping them alive but has major impacts on their ability to live life in a normal fashion,” Vella said. “I completely understand he’s frustrated and wants to move forward with a permanent” solution.
Vella said the program staff is “very creative” in how they offer various categories of kidneys and educate patients about the process. They check in with patients on a regular basis to ensure they’re still healthy enough to receive a transplant should a kidney become available.
He said the program’s “very active” living donor team also has an excellent outcome rate.
And patient confidentiality also applies to potential donors, Vella said, noting that information about potential donors — including whether they’ve completed the process — can’t be shared with the patient.
“You can imagine different scenarios where communication within a family or group could be problematic,” he said.
But Thiwat said friends and family have told him their paperwork hasn’t been processed, so he’s considering transferring his treatment to Massachusetts General Hospital in Boston.
“They’re literally playing with my life,” he said. “I’m pretty fed up.”
To learn more about being tested to donate a kidney, visit the Maine Transplant Program website at mmc.org/living-donation#link1 or call 662-7180.
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