Being Your Own Best Advocate

Tony Garcia-McMillian
Portland, OR

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Anthony suffers from end stage renal disease (ESRD) due to high blood pressure and diabetes related to a highly traumatic body injury. He was originally on dialysis from February 2010 to August 2010 before receiving his first kidney transplant. He has returned to dialysis treatment for the past three years, and in May of 2019 was trained to do home hemodialysis and started running his own dialysis June 1.

Looking for help

Kidney disease is becoming more frequent, but Anthony feels like there is no urgency around the issue. The COVID-19pandemic is clearly impacting patients’ kidney functions as well.

 

“Kidney disease is running more rampant than cancer these days, but we get less funding from the government and there’s less training and support programs for professionals entering the field of nephrology and dialysis,” he said.

The government’s role should be to provide support and listen to the needs of kidney disease patients.

 

"From a legislative standpoint, we need to make more money available for research on the different options for kidney transplantation,” Anthony continued. “We need to improve the dialysis technology overall. There have not been many improvements over the years other than making it more mobile.”

Balancing the need for care and the need to earn a living

As with many kidney disease patients, Anthony found it challenging to be a dialysis patient and maintain a normal life.

 

“If I didn’t have private insurance, my family would be in a devastating financial position,” he said. “They don’t make it easy to be in this position and have a job at the same time.”

 

Through his journey, Anthony has many lessons learned. Above all, he emphasizes the need to trust in your care partners – to have a true relationship based on mutual respect. He also points out that if something isn’t working for you, you can challenge it.

 

“If you are in the patient community, you need to be your own best advocate, learn as much as possible, trust in your care partners,” he said. “Providers need to be looking for people who understand the disease and their patients. They need to understand that sometimes it’s the luck of the draw. It doesn’t make us any less of a human being.”

Key Facts

When you have kidney failure, also known as end-stage renal disease (ESRD), you either need dialysis or a transplant to live. Kidney transplant is considered the best treatment option for people facing kidney failure because it can increase your chances of living a longer, healthier life.