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 [...]

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 [...]