Are there any online support/message boards for spouses of people doing home dialysis or any type of dialysis? This would be a great thing… I would find it helpful to talk to others in similar situations and learn about their experiences, frustrations, etc.
Heather, the best on-line support group I’m aware of is called Dialysis_Support. It includes people with kidney disease and people with kidney failure who are either on (every type of) dialysis or have had a transplant–and also family members (siblings, parents, kids, spouses). The list has 866 members, and generates about 100 emails per week (some weeks more, some weeks less). You can subscribe in individual message or digest mode (one message a day with all of the emails from that day). I joined that list back in 1997 when there were only about 250 members, and it offers a wealth of information and some truly wonderful people.
To find it, go to http://www.yahoogroups.com and put “Dialysis_Support” in the search box.
This is very nice! I browsed around there and there are over a dozen dialysis groups there…
P.S. I had the itch to search NxStage Users Group but nothing came up so I decided to start “NxStage Users Group”… :oops: anyway, for all NxStage users visit http://groups.yahoo.com/group/NxStageUsersGroup
It’s just the begining… :roll:
I set-up a forum specifically for families and caregivers as part of my “IgAN Cafe” a couple of years ago. While my IgA Nephropathy Support Group on Yahoo Groups has 1800 members, and there were an additional 500 members who used the web-based IgAN Cafe, nobody used the caregivers forum. Spouses and other relatives seemed to prefer just being part of the main group, and so it wasn’t worth continuing it.
Foundation for IgA Nephropathy
Am so proud of you! Keep it up! Things like this, people volunteering and helping others is what keeps us going!
Anyway, I did this banner for my group last night…a little rough I think but I good start…