Sadly, Paul Van Vooren passed away after this article was published. As a patient with Von Hippel-Lindau (VHL) who has undergone 65 surgeries, including a kidney transplant, and received dialysis treatments for over eight years, I know the importance of coordinate care for dialysis patients. My treatment for VHL sometimes requires me to travel hours to the Mayo Clinic in Rochester, MN. I also have my primary doctor in Sioux Falls that helps me maintain my active lifestyle, despite needing to rely on dialysis. From my conversations with other kidney patients, I know that isn’t the case. They also rely [...]

Dialysis has forced me to make major adjustments, requiring me to make three weekly trips to the clinic for four-hour treatments while I continue my years-long wait for a kidney transplant.  I work hard to maintain my diet, get proper exercise, and stay on top of all of my treatments, but many dialysis patients can’t because they have diabetes or other serious conditions alongside kidney disease, and they need help coordinating their care.  A new bill working its way through Congress could help. The BETTER Kidney Care Act would allow all the doctors a dialysis patient sees to work together [...]

Dear Editor: 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 [...]

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 [...]