A community at home†

Abstract

When I was 22 months old, I was diagnosed with cystinosis. My parents knew the day would come when I would need renal-replacement therapy, and researched my options. After my kidneys failed when I was 10 years old, I received a transplant from a cadaver, but it was rejected after six months. A few months later, my mother donated one of her kidneys. It lasted four wonderful years before rejection. I then received a kidney from my father, which lasted only 13 months. Between each transplant, I would undergo in-center hemodialysis (HD). I often felt exhausted and depressed. When the last kidney failed during my high school years, I decided to seek at-home therapy through peritoneal dialysis (PD).

PD was a successful treatment for me for more than 12 years. It wasn't always easy, but I graduated from high school on time with honors, went on to college to study at the University of Pittsburgh, and got a fulltime job with a major insurance company. I later developed encapsulated peritoneal sclerosis (EPS), a rare condition associated with long-term peritoneal dialysis use that causes fibrotic changes of the peritoneal membrane and ultrafiltration failure, making my continued PD therapy impossible.

When I returned to in-center HD in 2006, I was very sick from living with my kidney disease and other health conditions. I weighed just 86 pounds, and it was hard to put on weight with the EPS and the restrictive diet I needed to follow as an in-center HD patient. That same year, my nephrologist informed me about another option—the NxStage System One, which would allow me to dialyze at home with a trained partner using a machine about the size of a portable TV. Additionally, the system would allow me to undergo more-frequent dialysis, better resembling natural kidney function and providing more clinical benefits. I trained to dialyze at home as soon as I could with my mother as my care partner.

Almost immediately, I started to feel better. I was able to eliminate all blood pressure medications and could eat more to gain weight. Traveling and other day-to-day activities became easier, and I now had more control of my life.

In 2007, I became involved with an online group comprised of 20 to 30 people discussing home dialysis. With my new found health and quality of life, I wanted to learn more and share my experiences with others in the group. I became acquainted with the group creator, Rich Berkowitz, a fellow NxStage HD patient. Rich conceived the idea of formalizing the group, and I teamed with him to became a group moderator. Eventually, we created the website now known as NxStageUsers (the group is independent of NxStage Medical and all dialysis cen-ters). More people joined the group every day, and eventually we wanted to expand the group's goals.

Our aim was to support fellow dia-lyzors and prospective ones, share our personal experiences, and post current events and the latest news on dialysis and Centers for Medicare and Medicaid Services updates. Last year, we set up a meeting for some of the members—an event that, at first, we envisioned as a few patients and their families get-ting together to share stories. But the response was overwhelming, and we decided to create a more organized con-ference. The NxStageUsers Meet Up and Conference took place last October in Las Vegas, and was the largest-ever gathering of home dialyzors in one place. More than 130 patients, care partners, and others from the renal-care com-munity turned up. Additionally, several of the most recognized physicians in the nephrology community attended to present and discuss topics of interest to patients with kidney disease performing home dialysis. It was a special event for the dialysis community and all who attended. We discussed life with kidney disease, shared home dialysis experi-ences, and met new friends.

Five years ago, a trip like this seemed impossible. Many of us received dialysis in-center three times a week, making travel (which required scheduling treatments at our destination sometimes months in advance) difficult. The portability of the NxStage System One opened doors to dialyzors, allowing patients to control their therapy as opposed to coordinat-ing around high volume, high turnover in-center dialysis. Through the online community and the group, we are now sharing our knowledge and stories with others. We realize the importance of com-munity in facing a chronic illness such as kidney disease, and the power of the Internet and social media to bring us together and advocate for more frequent home dialysis. The community answers questions for existing users or new people considering home dialysis—from the tech-nical (“How are supplies shipped when traveling?”) to the emotional (“Where can I learn to self cannulate?”)—and assists with resources to locate home dialysis centers in the user's area.

I enjoy helping others by sharing my experiences and information I've learned along the way. Even though we all dialyze on our own at home, we don't have to feel isolated. We want physicians and patients to know that home dialysis does not require high levels of education. There are only two criteria: desire and commitment. Recently, NxStageUsers gained status as an official not-for-profit organization. We are excited about wel-coming more members, and joining other groups offering resources to advocate for the dialysis community.