When my doctor told me I had kidney disease, I wasn’t aware of just how serious it was. Two years later, though, I passed out and woke up in the emergency room, where doctors said I was experiencing both kidney failure and heart failure. Shortly after, I started dialysis. Fortunately, I was able to do in-home dialysis and remain active in my community and my church. Now, even after receiving a transplant, I’ve found my calling as an advocate for dialysis patients, and I am passionate about helping others through their treatments. Over the years, I’ve noticed how mentally, physically, [...]

After being diagnosed with end-stage renal disease in 2014, I’ve experienced dialysis treatments at home, in a clinic, and have even traveled with my dialysis equipment. While dialysis created a lot of anxiety for me at first, I have had the benefit of working with an excellent treatment team that is sensitive to my needs as a patient and ensures my treatments are tailored. Congress is working on a bill that can help dialysis patients benefit from care coordination like I have. The Chronic Kidney Disease Improvement in Research and Treatment Act — also known as the BETTER Kidney Care [...]

For over three years, dialysis has been a central part of my life. Three times every week I go to the dialysis center, where I check in on my friends who also get treated there and catch up on my favorite cooking shows during my treatment. The doctors and nurses at my facility are incredible. They’re like a second family, and often pick up on medical problems before they even start doing tests. Even when I suffered a major stroke at the dialysis center, they were there for me. However, other patients don’t have the benefit of all of their [...]

One of the most difficult moments of my life was finding out that, despite being only 24 years old, my kidney was beginning to fail. After years of dialysis and a kidney transplant, I learned through my experiences in the health care system what needs to be improved. Doctors and nurses need a better care coordination framework to more effectively treat their patients.  I had the benefit of working with terrific nurses and other providers who met my needs and communicated well between one another, but unfortunately that’s not the case for every kidney patient. Some patients I’ve talked to struggle because [...]

When I first learned I had kidney disease, I was fortunate to not have to start dialysis right away. For about six or seven years, my doctor worked hard to keep me healthy, doing everything he felt was safe before finally recommending that I begin dialysis treatments. When I finally began dialysis treatments at my local clinic, I found a dedicated and involved team of health care providers that were always willing to respond to calls and answer my questions, no matter the time of day. The team at my clinic is proactive and working with them has made going through [...]

Too often, we forget about the personal and mental health struggles facing patients with serious medical illnesses. This is especially true for dialysis patients, who often have to upend their lives to receive the treatments they need. I’ve experienced this personally when after three years of balancing dialysis treatments and doctor’s appointments, I was forced to close a successful restaurant that I had built from the ground up. What followed were years of struggle in order to manage my treatments and ensure that I was receiving the best care possible. But it doesn’t have to be this way, and the [...]

While most people with COVID-19 experience mild symptoms, dialysis patients like me who have a weakened immune system are more vulnerable to serious complications from the highly contagious virus. Now more than ever, immunocompromised patients with kidney disease must have coordinated medical care to ensure they are receiving the best health care possible from all of our medical providers. I know how well this works first hand because I am part of a coordinated care pilot program. Because of my multiple conditions, I see a nephrologist, a cardiologist, a primary care doctor, and a vascular surgeon, among others, and they [...]

My experience with dialysis extends four years: from when my first kidney transplant failed in 2014 to when I received my second transplant in 2018. During that time, the most frustrating thing I encountered was a lack of care coordination. I bounced between several doctors who treated my various health issues independently. Every doctor’s visit required me to provide my full medical history, which was time-consuming and labor-intensive. This was a burdensome task while still working a full-time job to support my family. However, my treatment center began implementing greater care coordination. This meant my doctors were starting to work [...]

Efforts to modernize the delivery of quality care to dialysis patients reach several milestones in 2020: Medicare’s first care coordination program for kidney care, the Comprehensive ESRD Care Model, expires at the end of this year; providers have been invited to participate in a new program, the Comprehensive Kidney Care Contracting Model; end-stage renal disease (ESRD) patients will, in October, for the first time have access to their choice of Medicare Advantage plans effective January 1, 2021; and a new bill is being introduced in Congress to create another integrated care option for kidney patients.  Why Care Coordination? Most dialysis [...]

As a dialysis patient, it has become clear to me that one of the biggest flaws in the American health care system is the disjointed way care is often provided to patients. If patients have chronic conditions alongside other health complications, it can be exceedingly difficult to navigate the different doctors and hospitals we need in order to receive proper care. When seeing so many different doctors at various clinics and hospitals, patients like me can suffer adverse effects if all our treatments are not designed to address our full medical history, rather than a single disease. This can be [...]