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Lessons learned from prison and dialysis while trying to prevent the pain, loss and cost of kidney diseases

These two health care settings provided invaluable lessons: get ahead of the curve through collaboration with other doctors, better monitoring, early referrals, and education.

Cardiology has the heart attack, oncology has the fateful diagnosis date, but there is no “kidney attack” to serve as a traumatic wake-up call for those at risk for kidney diseases. There is no event to urgently change someone’s point of view; “From this moment forward, you will pay attention to your kidneys and do what is needed to avoid a challenging illness and premature death.”

Kidney diseases arrive silently without observable external symptoms. It progresses without someone’s knowledge and it is easy to live in denial. Most of the world is focused on managing advanced stages of chronic kidney diseases with transplant or dialysis, after symptoms are evident rather than preventing the diseases from starting or flourishing.

With incredible growth in the numbers living with kidney diseases, my passion is preventing kidney diseases in the first place. If we can intervene earlier to promote and teach kidney health, we can impact the numbers living with these devastating diseases. Unfortunately, measuring prevention is difficult and prevention is not incentivized in our health systems despite the positive economic impact this would have.

Anyone caring for patients with kidney diseases will attest to the impact socioeconomic factors have on the kidneys. My two most valuable lessons about the prevention of kidney diseases occurred in very unexpected places; prison and dialysis.

Most people are surprised to learn that mortality rates decline at the start of incarceration because it is often the first time they receive proper health care. Primary care providers (PCPs) often refer prison patients to me early when a blood test reveals an increase in a prisoner’s creatinine level. The population that I see in my nephrology prison clinic is often younger, with few comorbidities and with more mild change in kidney function. During these visits, not only do I get to check their kidneys, but I also get the opportunity to talk to them about topics like risk factors, salt in their diet, NSAID overuse, and the importance of blood pressure medications. In the prison, I have an audience that I can teach early in hopes of preventing kidney dysfunction. In turn, I also get to educate the PCPs on kidney monitoring and prevention as well.

Most would not think about prevention in patients who have already experienced complete loss of renal function, but it is from this viewpoint that my second most valuable impact of prevention would come. Anyone caring for patients with end stage kidney diseases (ESKD) knows that a higher than expected proportion of patients live in low-income housing, experience food shortages, and often use food stamps and food pantries despite having some of the strictest dietary needs. As I got to know the patients in my dialysis shift, I could see that challenges from childhood, their limited access to food, their lack of access to healthcare and lower understanding of health-related issues all played a role in the progression of kidney diseases. It became obvious that if we had a system in place that would not allow these high-risk people to fall through the cracks, we could prevent their need for dialysis and, frankly, so many other health problems.

These two health care settings provided invaluable lessons: get ahead of the curve through collaboration with other doctors, better monitoring, early referrals, and education. So, how could I replicate this outside of prisons and before dialysis? Sadly, it’s a lot harder in “the real world”.

For earlier referrals, PCPs need education to become more aware of risk factors for kidney diseases and monitor blood pressure, weight, smoking, and family histories and type 2 diabetes. Unfortunately, too often these indicators seem less concerning than other conditions needing focused treatments. They often run out of time to discuss how to limit these mild changes in kidney function from getting worse. Additionally, there are just not enough kidney doctors to go around. While seeing all patients with early diseases would be great, kidney doctors are not available for prevention because there are so many patients who are at advanced stages of kidney diseases and need the focus. It will take a village but a transition through media campaigns to heighten awareness may be a good first step in highlighting the need.

Patient education can be fruitful for some patients. One of my favorite success stories is a 46-year-old man who did not take his type 2 diabetes seriously for years. At 300 pounds, his diabetes and blood pressure were uncontrolled and dialysis was imminent. This brave man didn’t want to just end up on dialysis, he wanted a transplant and actively sought a living kidney donor. To be eligible, he needed to lose 100 pounds and control his A1C, which he did in a year and a half. A nurse and I worked to educate him about his diet and medications to get him on track. He was one of the lucky ones, on dialysis for just three months before getting a kidney transplant and his life back.

Unfortunately, a more typical example is a 41-year-old woman who visits me with her 20-year-old daughter; the joy of her life. They both have type 2 diabetes, obesity, and kidney diseases. She was referred to me earlier in the course of her kidney diseases but unlike my other patient she does not have his motivation or his support system. I set her up with a dietician to explain her food choices, even while on food stamps, and included her daughter for support at home. Despite dedicated time and effort and her promises to change, she has not. Even though she was referred to me early, I have been unable to get her buy-in or sufficiently impact her support network to improve her prospects so far.

Fortunately, I am not the only one trying to prevent the pain, loss, and cost of kidney diseases. New and promising programs seem to emerge every year in physician and patient education. Many people, in medicine, social services, government and community care, are working to discover the pathways, and ultimately the system, which will support people early enough to shift our focus from kidney diseases to kidney health.

Photo:, Getty Images

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Dr. Laura Maursetter

Dr. Laura Maursetter is an associate professor (CHS) in the Division of Nephrology at the University of Wisconsin School of Medicine and Public Health. Dr. Maursetter is the Chief of Nephrology and Medicine Subspecialties at the William S. Middleton Veterans Administration Hospital, and Medical Director of the Aspirus Dialysis Unit in Portage, WI. She is an active member of the American Society of Nephrology where she is a United 4 Kidney Health advocate.

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