support groups

[texasstyle]

Yikes, I have been doing a lot searching and it looks there hardly any support groups in my area for dialysis related issues. It appears most are no online. As great as they can be, sometimes it nice to go and be with other people. You know what I mean. I will continue my search for the Bucks County area. I am also calling the clinc to see if they have a reference.

[willowtreewren]

TS, talk with the social worker at your clinic. Ours almost always asked me how I was doing. And since I was doing "OK" she put others in touch with me so I could coach them, especially on the NxStage process. For some reason, she did not advocate for IHD (too many folks with negative attitudes, I think she said).

At any rate, it wouldn't hurt to ask. BUT, keep in mind, that sometimes support groups can tend to be downers. It takes the right kind of facilitator. 

Good luck.

Aleta

[jeannea]

I am in your area (Montgomery County PA) and I can't find much either. There might be something in Philly but that's a pain. If you want to get together some time, send me a message. We could put something on here about Philly suburbs and see who else there is.

[ToddB0130]

I'm also in Bucks County as well (Bensalem)

[dyann]

cant find any in my area either   and strange when I found someone on here who lives in my area and from my home town I wrote them and asked if we could talk he said yes love to then never ever wrote back or even got online again makes me wonder if this person really has ESRF  I shouldnt think that way but it was really strange.  Oh I am from Indianapolis, IN

[texasstyle]

I'm still trying to get around to this matter please believe me. My dad is having heart surgery today and some other issues kept me a little pre occupied. sorry

[Meinuk]

Some of the ESRD Networks have Patient Groups (representatives at facilities who are also in contact with other representatives throughout the area). 

Why don't you give a call to the Network Patient Services Coordinator or Community Outreach Coordinator in your area and ask if they know of any or if they have a Patient Group.

I don't know about Pennsylvania or Indiana, but I do know that New York State has an active PAC. 

Here is a link to find your local network: http://www.therenalnetwork.org/

RSN also has meetings and representatives throught the nation  http://www.rsnhope.org/

They have a GREAT peer support telephone line:  RSN Patient HOPEline
(800) 579-1970
10 am to 8 pm PST

HOPEline en Español
(800) 780-4238


And even the NKF has gotten into the game of peer support, but I don't know anyone who has called them (and just exactly who the peers are)
Here is their info:  (what kind of KILLS me is that they don't seem to care about people on dialysis (but they do care about kidney disease, organ donation or transplantation in the following... but I have been told that I am too sensitive....)

NKF Cares
Offers support for those people affected by kidney disease, organ donation or transplantation. It's dedicated to patients, family members and caregivers. Speak with a social worker who will help answer your questions and listen to your concerns. Call toll-free at 1-855-NKF-Cares (653-2273).