Defending Personal Independence
Matt’s history of kidney disease
When Matt was younger, he was run over by a car and put into a coma. This early
trauma left lasting impacts, and he was diagnosed with trauma onset diabetes at the age of 13, which turned into full onset Type 1 diabetes when his pancreas
subsequently failed. Matt struggled with adjusting to the major lifestyle and diet
changes of diabetes, but he loved to mountain bike, swim and hike.
Out on a jog one morning, Matt passed out and woke up in a hospital bed. His
kidneys were failing, and he needed dialysis treatment. The next day a fistula was inserted and the following day he went to a dialysis clinic and underwent a six-hour treatment. Now on hemodialysis, Matt finds that he lacks the energy to do the activities he used to enjoy.
“Being on dialysis, it drains your body,” Matt said. “You almost feel like you’ve gotten done running a marathon.”
While treatment for kidney disease proved to be physically exhausting, it was also emotionally draining.
“I went through these emotions where I thought, ‘I am a nuisance to people, I am grateful for my health, but I am a nuisance to people,’” Matt said.
A career disrupted and a struggle for support
Matt was making a good living and able to support himself and his daughter prior to his diagnosis. Afterwards, Matt informed his employer he could still work -- but with some limitations. Instead of working with Matt on a solution, he was terminated.
“If you have a full-time career, dialysis has a pretty big impact on that,” he said.
“Companies don’t look at you as a person, they look at you as a number.”
Without a job, Matt faced a long battle to qualify for the support he and his family needed. Insurance companies and access to social services were not easy to navigate. Matt was denied enrollment in Medicare 12 different times because he was too young.
After multiple interviews with Medicare and Social Security with no success, Matt hired two attorneys to demonstrate that he would die without financial support for his treatment.
Hoping for a transplant
Matt is currently unable to maintain his hemoglobin levels, but with the assistance of blood transfusions he has made progress. He hopes to get on the transplant list for a kidney if that progress continues. To qualify for a kidney transplant, recipients must meet certain baseline health requirements. Even if Matt does get on the list as a qualified recipient for a transplant, he then must play the waiting game for the right match for a donor. In Oregon, only about 50% of patients on the waiting list receive a transplant.
Despite the obstacles, Matt remains hopeful for the future. He treats each experience as an opportunity to learn. He lives by the motto, “every challenge that I have is an opportunity to learn for tomorrow, because next time something similar happens I will know what to do.”
Dialysis is life support. Treating kidney failure and its comorbidities is more consuming than a full-time job: more than 80% of patients cannot work.