But those who take care of their kidney disease at home do so much more. Ask the NxStageUsers, who held their second meetup and conference this past week in New Orleans.

The conference objectives were to make the gathering "a celebration of life. The life that home dialysis has afforded us … in the coming days, let’s share our stories and what we’ve learned along the way."

Indeed, the two-day conference was a platform for the 100+ home hemodialysis patients and their care partners to learn and discuss their experiences with short daily home hemodialysis. Topics ranged from cannulation techniques to anemia management to understanding health care reform to being an advocate for home dialysis. Breakout sessions covered topics like the pros and cons of transplantation, traveling with the NxStage System One machine, balancing work and dialysis, and help for care partners. One of the breakouts sessions was presented by Terry Waldon, who manages the NxStageUsers Buddy System. Waldon, who has been a care partner for his wife Sharon for 16 years, including the last five doing home hemodialysis, matches dialyzors nationwide to help with the rigors of daily dialysis.

Those at the conference understood the benefits of home hemodialysis, and many expressed gratitude for having access to the machine. Joseph Turk, head of NxStage Medical’s North America operations, said updates are coming: a lighter machine for ease of travel, and the company is working on getting FDA approval for nocturnal dialysis.
Patients who want to go home with a NxStage machine face special challenges: NxStage looks for centers that are committed to expanding (about 1,000 clinics around the country have NxStage’s System One available). Home hemodialysis requires more patient training than those who choose peritoneal dialysis. And, in many cases, a patient partner is needed. Those elements are key to a successful program; Turk says the drop out rate among patients choosing the System One machine tends to occur in the first three months.

In her blog about the meeting, Sharon Whipkey, who wrote about her first year on dialysis for NN&I’s October issue and traveled with her NxStage machine to New Orleans, said, "What an amazing group of people. We had such a good time meeting everyone, putting faces to names, sharing experiences and marveling at how fortunate we are for discovering the benefits of home hemodialysis." The connection NxStageUsers patients feel, said Whipkey, is "so wonderful and affirming. The fact that we face the same challenges and issues and we will receive support, information, and empathy is invaluable to me.

"Yet, for all the meeting, greeting and learning the best part for me was listening to and sharing our stories. Whether listening to a caregiver story or a dialyzor story I was moved so many times. For each and every one of them/us are committed to leading wonderful and fulfilling lives, not allowing kidney failure to define them/us. So many caring and courageous individuals in one place with one goal: to live life to the fullest. Truly humbling."

Note: at the meeting, the NxStageUsers agreed to change the name of their organization to Home Dialyzors United, opening up membership to all individuals who dialyze at home. More information is available at www.NxStageUsers.com.