I am a lifelong Oregonian and suffer from stage 5 chronic kidney disease, meaning I depend on dialysis to live. Through my treatments, I've seen first-hand the importance of coordinated care for myself and others with end-stage renal disease (ESRD). Care coordination is a system where each of a patient's health care providers proactively share information with each other, including what treatments they prescribe and what follow-up care they provide. This helps improve care for the patient, especially those with ESRD, and also ultimately lowers costs for both the patient and their providers. ​ Unfortunately, many patients don't get that [...]

Since 2009, I have served as my father’s in-home caregiver as he undergoes dialysis treatments. In that time, we’ve had the incredible fortune of working with supportive and attentive medical staff who helped us as we learned about life with dialysis. Because of this great medical care, my father was, until a recent amputation, able to maintain an active lifestyle as a pastor and enjoy his favorite outdoor activities like fishing. However, there was a lot of work involved for me early on in the process as his caregiver, including asking the right questions during appointments, managing medications, and ensuring [...]

Throughout the COVID-19 pandemic, there has been much attention devoted to improving care for high-risk patients in Oregon and throughout the nation who have chronic health problems which hinder their ability to fight off the virus. During all of this, however, relatively little attention has been given to the difficulties faced by those with end-stage renal disease, who depend on dialysis treatments several times a week just to live. ESRD has a significant negative impact on immune systems, and many of these patients have other conditions, like diabetes, which are also especially vulnerable to the COVID virus. Unfortunately, the doctors [...]

High-risk patients have been one of the focal points of the public response to COVID-19. Now, as our leaders continue responding to this epidemic, they must pay particular attention to the impact their decisions will have on patients with end-stage renal disease, or ESRD, who rely on dialysis treatments to live.  Living with ESRD poses many unique challenges, as even common infections like the flu can be seriously dangerous for these patients. Many also suffer from additional health issues that compromise their immune systems, putting them further at risk.  However, ESRD patients’ treatment plans are often hindered by a lack [...]

You might be hearing a lot about what’s not happening in the nation’s Capitol right now but one thing that is happening is the BETTER Kidney Care Act—to expand care coordination opportunities for dialysis patients. The COVID-19 pandemic has placed the health of kidney disease patients at risk more than ever before, while also showing the many challenges to ensuring their continuity of their care. Here’s a first-person take on the issue from Felice Moore, of Indianapolis: I’ve been on dialysis for 19 years, but my experience with dialysis treatments goes back even further to 1989, before I received my first kidney transplant. After my first transplant [...]

This has been a difficult year for the medical community as we do everything we can to combat the spread of COVID-19 while protecting the most vulnerable patients. One especially vulnerable group right now is patients with end-stage renal disease (ESRD), in large part because they see so many different doctors. They need to regularly see a primary care physician and nephrologist, and go in for dialysis multiple times a week. Many also have other health conditions like diabetes alongside their kidney disease. Unfortunately, these treatments often are not properly coordinated, meaning extra doctors’ appointments, higher costs, and sometimes even [...]

Protecting patients in the U.S. has been at the top of the public mind since the start of the COVID-19 outbreak. Since March, people both here in Missouri and across the rest of the country have been taking steps to help curb the spread of the virus and keep each other safe, particularly those with other health issues that make them more susceptible to contracting the virus and having serious health problems as a result. Even with all we’ve done so far, however, there is still more we and our elected officials can do to protect high-risk Americans. One group [...]

Since she was just three days old, my daughter has struggled with kidney failure. After over 30 years and three transplants, it’s become clear that more needs to be done to help kidney patients. Care coordination in particular needs a lot of attention. Without effective communication between doctors, things get harder for patients, and they can suffer serious health problems as a result. We’ve experienced this in my daughter’s care from the beginning. Medications and doses occasionally got mixed up when she was a baby, and recently a miscommunication between her doctors meant she was diagnosed with 40mg of one [...]

When my kidney issues started in 2009, I was fortunate enough to receive a donor kidney from my mother, which lasted until 2017. Unfortunately, new medications caused that kidney to fail and ultimately forced me to go on dialysis. Since starting dialysis I’ve worked with a great team at my local clinic that truly cares about me and even helps to coordinate dialysis treatments for me with other clinics when I travel for work. I’ve noticed recently, though, that I’ve had to play a bigger part in coordinating my own care when I see doctors outside of my clinic. Occasionally, [...]

While working in Abu Dhabi, I found out I had kidney disease and needed to begin dialysis. I was able to continue working abroad for a few more years, but a 2017 trip to the hospital showed me it was time to move back home. Since then, I’ve noticed that a better, more coordinated system is needed to help dialysis patients. Even when I had a care coordinator, I found the system never really worked for me. Whether it was managing medications, doctors’ appointments or even my attempts to get a kidney transplant, I always had to control the process [...]