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).
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.
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.
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.
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.
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.
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 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.
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.
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.