"Dialysis Was Hell to Me"

Abbey Martin
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In this article, ASN staff member Abbey Martin interviews Patrick O. Gee, Sr., PhD, about his journey with kidney disease. Dr. Gee received the ASN President's Medal at Kidney Week 2022 in recognition of his work in advocating for the highest quality care for kidney patients. Ms. Martin, program associate, Research, Discovery, and Innovation at ASN, is pursuing a master's degree in Health Communications.

Patrick Gee is physically exhausted. His white T-shirt and sweatpants are the only things he can fit in now. In just 8 months, he has gained over 150 pounds of fluid, to the point where when he lies down, he feels like he is drowning.

He and his wife are making their way to the in-center dialysis clinic near the hospital. In the dimly lit hallway, men and women, many of whom are amputees, are lined up in chairs, with tubes and wires poking out of their arms. Pain and exhaustion paint their faces.

“That was hell to me.”

As a man of faith and minister at Mountain Movers Ministry in Richmond, VA, his words weigh heavily. After his diagnosis in April 2013, Gee is “crashing into dialysis,” just like many men and women in minority populations, and struggling to keep his faith while facing the harsh reality of his diagnosis.

Diagnosed with kidney failure too late

In April 2013, Gee was headed to a routine appointment with his endocrinologist. He had been receiving treatment for type 2 diabetes for the past 10 years and was meeting with his doctor on a quarterly basis. As Gee reached for the doorknob at the end of an otherwise normal check-in, he heard his doctor call back to him.

“As I was walking out the door, she was like, ‘Hey, Patrick. I completely forgot to tell you that looking at your labs, you are at stage 3B of ESRD [end stage renal disease]'” (1).

“I didn't know where my kidneys were or what they did,” Gee said. “I didn't know that diabetes was the number one leading cause of kidney disease. It just went over my head to be perfectly honest.”

He would soon learn that his kidneys were functioning at 35%. Blame, anger, and sadness were overwhelming. His doctor, who he had been seeing regularly, had not mentioned that his kidney function was declining or that his diabetes put him at a higher risk (2).

Gee was in a waiting game. He was slowly watching his kidney function decline from 13% to 5%. On November 23, 2013, his only option was to start dialysis. Walking in to the in-center dialysis clinic, he recalls cycling through every emotion in the grief process. His decision to opt out of in-center hemodialysis was made after that experience.

The medical system had failed him, and as a Black man, his experience was not unique. Although Black people make up 13% of the population in the United States, they represent 35% of people receiving dialysis (3). Kidney disease progression is dependent on early detection, and in a system that is still rooted in institutional racism, Black people do not have access to the same care and are often diagnosed too late (4).

Navigating a hidden illness

For the next couple of years, Gee hid his illness from his friends and his congregation. The only one in his family aside from his wife who could watch him dialyze was his 3-year-old granddaughter. “My kids could not see my dialyze. They refused to come in the room. They didn't even want to see the catheter. But my granddaughter thought that I was one of the transformers.”

Dialysis was defeating and lonely. He would have to lie on his bed and allow the dialysate to flow into his abdomen for 4–6 hours. It was painful and physically draining. “I was so tired of doing dialysis that I would take the first kidney that came my way.”

In 2017, while Gee was advocating on Capitol Hill, his declining health would make that his only option to survive.

“Help me in my disbelief”

Gee was on Capitol Hill to support the Living Donor Protection Act of 2021 (5) when he passed out twice while talking to members of Congress. Medics told him he needed to see his doctor immediately. He remembers seeing his nurse on her knees crying. His results showed that he had hypercalcemia and was potentially living with bone cancer.

“Help me in my disbelief,” he said, as he called his minister. His health was declining, and dialysis was no longer his best treatment option. However, Gee was aware of the staggering inequities in transplant opportunities. Black Americans make up 33% of the transplant waiting list and in the last three decades, have been less likely than their White counterparts to receive a transplant (6).

In April 2017, Gee finally received a call about a living donor kidney. Unfortunately, after his surgery, he was told that the new kidney was not functioning, and he would have to continue with 24 hours of dialysis every other day. He could not find an answer in his faith that could explain his misfortune.

Bringing his story to action

Gee's story drives his passion for advocacy. He saw the injustices of the medical system firsthand. It brought him through some of his deepest battles with his faith. Today, he champions the Kidney Health Initiative Patient and Family Partnership Council (7). He makes sure that the patient voice is at the center of every discussion relating to new options for the prevention, treatment, and diagnosis of kidney diseases.

“He's a fierce, consistent advocate for people in his community, especially in terms of addressing the racial-ethnic disparities in kidney diseases and the importance of fostering collaborative and shared decision-making between patients and their care team,” said Glenda V. Roberts, Director of External Relations and Patient Engagement of the Kidney Research Institute (8) and the Center for Dialysis Innovation (9).

Respecting the process

Gee spent 33 days in the hospital after his kidney transplant waiting for his kidney to start functioning. On the 47th day from his transplant, he screamed so loud that his wife came running up the stairs. He had finally produced urine and realized the full meaning of some of the words he heard during his hospital stay.

“Respect the process.”

He would carry these words with him to provide support to others living with chronic illnesses.