Gene’s journey of hope

Gene Blankenship of Gore lives a life like so many other Oklahomans. His wife, Stacy, is a devoted helpmeet. They have four children — Addyson, 18; He’ll be the first to tell you “there are thousands of families like mine,” and that he has “been blessed with an amazing family.”

Dawson, 17; Colton, 15; and Gideon, 5.

In addition, he’s part of a fraternity of 37 million Americans.

But he wishes he wasn’t. He has Polycystic Kidney Disease.

Years of doctor visits — “medical appointments became routine,” he says — transitioned into three years of dialysis, each treatment lasting four hours, three times a week.

Dialysis initiated him into yet another fraternity, where more than 570,000 Americans undergo the process of filtering waste and excess fluid from their blood.

Then on Feb. 9, 2019, he became one of less than 250,000 Americans who have received a kidney transplant. Blankenship’s surgery was at the University of Arkansas Solid Organ Transplant Center in Little Rock under the care of Dr. Lyle Burdine, who he refers to as a “Master Jedi surgeon.”

His advocacy journey and dedication to the kidney community had reached a significant milestone.

While dialysis and kidney transplants are not cures, Blankenship, 45, has a renewed commitment to a pathway of hope he shares with others in his small fraternity.

“Now, post-transplant, my passion lies in ensuring that all the other mothers, fathers, aunts, uncles, grandparents, sisters, brothers and others have a pathway of hope,” he says.

Providing Blankenship with a forum and a megaphone are his service on national kidney advocacy and education organizations — with Dialysis Patient Citizens as a member of the board of directors, chair of the Governance Committee and a member of the Policy Committee; an appointee to Kidney Care Partners Coalition; and an advocate with the National Kidney Foundation and the American Kidney Fund.

“The current kidney crisis in America is characterized by the alarming rise in the prevalence of kidney disease, particularly chronic kidney disease,” Blankenship says. “This crisis has significant public health implications, as kidney disease is now considered the fastest-growing noncommunicable disease in the United States. Kidney disease is a serious condition that affects the functioning of the kidneys, which are vital organs responsible for filtering blood, regulating blood pressure, producing red blood cells and maintaining bone health.”

Gene’s journey

“My story began at Cherokee Nation Hastings Hospital in 1978, where I came into this world,” Blankenship says. “My journey with kidney disease traces back to the early 1980s, during my toddler years. As a child, I would watch with fascination as my father underwent peritoneal dialysis at home. A vivid memory remains of the night when a nurse called to inform him about a potential kidney match from a deceased donor – a pivotal moment.”

Gene Blankenship of Gore has advocated on Capitol Hill multiple times since 2003, and says it’s imperative that the patient’s voice of kidney-related legislation is heard.

Tragically, just a few days after his transplant in 1989, his father passed away. Gene was 12 years old.

“The full weight of his absence only hit me later in life,” he says.

“The signs of kidney trouble didn’t surface until around 2001. Initially, I attributed the symptoms to poor sleep. Although I managed to function fairly well, there were subtle indicators like headaches, lower back pain, occasional nausea and persistent fatigue. It wasn’t until 2003, during a visit to a doctor for a leg injury, that I learned about my alarmingly high blood pressure,” Blankenship recalls. “This revelation was news to me, as no one had previously mentioned any blood pressure issues. This marked the first time I became aware of this concern.” He immediately started treatment with blood pressure medication under the guidance of a physician assistant, leading to regular medical check-ups.

“As medical appointments became routine, I spent hours driving to these visits, which gave me plenty of time for self-reflection. During one of these journeys, I had a realization — due to my personal experiences and my family’s struggles, I have witnessed nearly every aspect of Polycystic Kidney Disease. This insight drove me to delve into kidney-related knowledge. I started following legislative developments and advocating for all kidney patients.”

Blankenship’s pursuit became a passion, and he enthusiastically immersed himself in understanding every essential medical procedure, earning a reputation as someone who asked insightful questions and who was not afraid to speak up for those in need.

Blankenship’s diagnosis soon led to dialysis.

“Initially, my family considered home dialysis, statistically the best option,” he says. “After two weeks of training, however, we transitioned to in-center dialysis at the Cherokee Nation Redbird Smith Health Complex, specifically at the Janelle Fullbright Dialysis Center.”

It was there that Blankenship reconnected with the same PA who had diagnosed his high blood pressure in 2003. He was working with dialysis patients, which was a fortunate development for Blankenship.

“I dedicated three years to this treatment regimen, never missing a treatment. Rather than pass the time listening to music or scrolling through social media, I chose to focus on learning, so I would find a subject I did not know anything about and listen and learn. With each treatment lasting four hours, three times a week, I had ample time to expand my understanding.”

The waitlist is long

Blankenship says there are various aspects of a person’s kidney journey that remain hidden from those who are unaware. The fatigue experienced can be incredibly intense, he says, sometimes leading to waking up completely exhausted. When the kidneys fail to cleanse the blood, toxins begin to accumulate within the body. In a healthy individual, the kidneys perform their cleaning function 24 hours a day. However, someone on dialysis only has 16 hours per week for this crucial process.

“Presently, there are 100,000 individuals on the kidney transplant waitlist and 600,000 on dialysis. My aim is to forge a path of hope for those battling end-stage renal disease. Having navigated these challenging waters, I possess a map that I’m more than willing to share with my fellow brothers and sisters in this journey,” he says.

“The impact of medications can be overwhelming, and the sensation of nausea can be particularly challenging,” Blankenship says. “I’ve found myself in situations where I had to either address a group or attend a meeting, only to have everything come to a halt due to the adverse effects of nausea. Despite my inclination to not be sidelined, I persevered.

“My ability to push through was greatly dependent on my support system. I’ve been fortunate to have an exceptional support system, with my wife taking on the role of the most dedicated caregiver. She stood by me every step of the way,” he says. “My sister Candace, who actually is a nurse at Redbird Smith Health Clinic where I was treated, was a tremendous support.”

As the time for his transplant neared, he couldn’t help but recall his father’s transplant.

“Looking at my children before the transplant, I would pray I wouldn’t miss any moments, including their birthdays, graduations or other important family experiences.”

In the four and a half years since his transplant, he not only has continued to enthusiastically immersed himself in understanding kidney disease, but has cherished each day with his wife and children on their small hobby farm where they garden, fish, hunt and kayak the lower Illinois River.

“I have been blessed with an amazing family. My wife Stacy has been my rock through this entire journey.”

Blankenship has advocated on Capitol Hill multiple times since 2003, and says it’s imperative that the patient’s voice of kidney-related legislation is heard.

“Your stories are crucial. If the opportunity arises to communicate with your Senator or Representative, share your unique story,” he urges.

Blankenship cites at least eight bills awaiting passage in the U.S. House of Representatives, which will then be sent to President Biden’s desk for signing.

But, he is quick to point out, funding remains a significant challenge, and insurance companies present substantial obstacles.

“Recently, Cigna denied approximately 300,000 patient claims using a rapid algorithm that spent an average of 1.2 seconds per denied decision,” Blankenship says. “What’s needed is empathy over greed, prioritizing patients over profits.”

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The statistics

As a national advocate serving on national boards and committees, data is readily available for Blankenship to share, and he doesn’t miss an opportunity.

• Approximately 37 million Americans currently have kidney disease

• About 807,000 Americans live with kidney failure, which is end-stage renal disease

• More than 570,000 Americans are undergoing dialysis, but the average length of life on dialysis is about five years

• More than 245,000 Americans have received kidney transplants

• Kidney disease affects more than 15% of American adults, with people of color being at a greater risk for kidney failure

• Shockingly, 9 of 10 people with kidney disease are unaware that they have it, emphasizing the lack of early detection

• The shortage of available donor kidneys exacerbates the situation, leading to the vast majority of people with kidney failure relying on dialysis for treatment

• There are more than 100,000 Americans on the kidney transplant waiting list, but only a fraction receive transplants each year due to numerous stumbling blocks, such as the organ procurement system, which last year alone discarded 9,416 organs

• An average of 15 people die each day because of no transplant options

• The current CDC death rate in the United States is 3,464,231.

Not surprisingly, funding is a major hurdle. The National Institutes of Health’s 2023 budget devoted a disproportionate amount of money to research affecting fewer people than to diseases affecting the most:

• $3.8 billion ($559.55 per patient) for Alzheimer’s/ dementia, which affects 6.7 million people

• $8.1 billion ($448.77 per patient) for cancer, which affects 18 million people

• $1.8 billion ($88.20 per patient) for heat disease, which affects 20 million people

• $1.3 billion ($34 per patient) for diabetes, which affects 37.3 million people

• $700 million ($18.94 per patient) for kidney disease, which affects 37 million people

America’s kidney crisis

“The crisis calls for urgent attention and action,” Gene Blankenship says. “Here’s how I want to raise awareness and encourage others to get involved.”

• Donate. Consider becoming an organ donor, especially if you are healthy. Organ donation can significantly improve the lives of individuals with kidney failure.

• Raise awareness. Spread information about kidney disease, its risk factors and the importance of early detection. Educate your family, friends and community.

• Support research. Donate to organizations and research institutions dedicated to studying kidney disease, finding better treatments and raising awareness about the condition.

• Healthy lifestyle. Adopt a healthy lifestyle to reduce the risk of kidney disease. This includes maintaining a balanced diet, managing diabetes and high blood pressure, staying physically active and avoiding excessive use of pain medications.

• Regular check-ups. If you’re at risk due to factors like diabetes or high blood pressure, schedule regular check-ups with your healthcare provider to monitor your kidney health.

• Advocacy. Join or support organizations advocating for better kidney health policies, improved access to care, and increased funding for research and treatment.

• Fundraising. Organize or participate in fundraising events to support individuals living with kidney disease and their families.

“Remember, small actions can make a significant impact in combating the kidney crisis in America,” Blankenship says. “By donating, raising awareness and supporting research, you contribute to improving the lives of millions affected by kidney disease.”