Talk about an elite membership! If you are a NxStage (Home Dialysis Machine) user or CarePartner, you might want to know about this group. I just joined as a CarePartner.
Go to Yahoo.com, then Yahoo Groups, then NxStage Users Group. If you qualify, you may then become a member of the NxStage Users Group. It's not run by the NxStage company. It's run by consumers who use the machines on a regular basis.
Then, follow the members' conversations: "I had a problem with my fistula..." or "How do we take blood pressures when there are fistulas in both arms?" or "Do you know of a center that promotes Nocturnal Dialysis?"
The best thing about this forum is that solutions are offered by people who know! People who know how to build a bandage bridge at the point of access to reduce a chronic Red #24 Alarm. People who know what it's like to have the whole operation primed and ready to go, only to have to restart due to a technicality! And people who really understand that access protection is paramount.
I'm not trying to imply that others can't help; they do! But when I call a help-line and am asked "Does this call pertain to a Home Dialysis patient?" I know in my bones that the operator has probably NOT struggled with an arterial pressure that suddenly reads >400! And when asked at the national center, "What state are you calling from?" It's a stage of urgency - bet on it!
Does this invalidate the advice of Dialysis Nurses, physicians, and others? Not at all. But it's good to remember how self-help groups of all sorts came to be. The people in the know - the "end users" are the front-line experts.
Take care,
Linda Gromko, MD
It's true that the Listserv referred to may appear to be an elite group because it's limited only to dialyzors using the machine, or care partners. The reason is because when we formed the group decided it wanted to keep the discussions private, especially considering there was conversation about the company and dialysis centers often taking place.
ReplyDeleteFor that reason and the fact many wanted to join who did not qualify, we started a public forum on our website in which anybody can join. You can find the public forum at http://www.nxstageusers.com .
Rich, thank you for the information about the public forum. BTW, I certainly didn't mean "elite" in a negative way - this is an extremely helpful group! Linda
ReplyDeleteLinda,
ReplyDeleteHello! My name is Joe Atkins and I'm a dialysis nurse at the Dayton VA Medical Center in Dayton, Ohio. I've been involved in home hemodialysis since the 70's. Few people realize that home hemodialysis is really where it all began, before it turned into, what I call, Jiffylube-cattle call dialysis (in-center units). Without any doubt, patients who care for themselves, at home, are more independent, more compliant, have lower mortality and morbidity, than patients on in-center hemodialysis.
The VA is taking to the NxStage program in a big way, because now the emphasis is to move care toward home and independence. It's taken four years to get the administration at the Dayton VA to take home hemodialysis seriously. Finally, Central Office and Secretary Eric Shinseki is leading the way. NxStage is attempting to work with the VA through a new grant program. The details of this effort haven't been sealed yet, but I'm hopeful that it will. The VA's that have moved forward with NxStage are having tremendous positive results with their patients. Presently, we only have one patient on daily home hemodialysis, but it has changed that person's outlook and quality of life, so much, that you wouldn't recognize him/her (confidnetiality) personality wise. No one who had worked with this individual would have ever predicted the wonderful changes and growth that this person has attained. I don't own stock in NxStage and have no financial arrangements or benefits from them. I can only say that I'm glad that the company is financially well managed, so that they can continue to provide their technology to the home hemodialysis market. Sadly, there have been other good machines put out by companies in the past, but, unfortunately, they were not well managed and went down the tube. I hope that NxStage is here to stay. There are three companies trying to develop a new compact, home hemodialysis machine. Unfortunately, I believe they are finding that, it's difficult to engineer themselves around NxStage's patents. Being a patented inventor, myself, I'm more than well aware of the difficulties involved with creating new technology. It's murder to get new medical technology through the patent office, much less the FDA. I hope that I'm permitted to come here and communicate with you folks, as it would be an honor. I've been continually working in the field of dialysis for 37 years. I was one of the first certified dialysis technicians in the world, through BONENT and was one of the first certified nephology nurses in the world, also writing the first article on Nephrology Nursing Certification. Actually, I'm just telling my age, letting you know I'm the old coot of dialysis.
Dialysis Joe - Home Dialysis wins hands down for so many reasons. You might want to contact Rich Berkowitz above re: participation. Thank you for your comments. Linda
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