The important of network and support groups for kidney patients

[st789]

How important it is to all of you?  Kidney patients face more challenges and obstacles to overcome everyday.  Decisions we make tend to have more permanent consequences down the road than healthy folks.  For average folks, they could quit the jobs they do not like and look for another job or move to a new town anytime they want to but for us it is different.  This is why I love this site so much.






EDITED: MOVED post to general discussion area-kitkatz-moderator

[MyssAnne]

Very important. As much as I rely and look forward to using this site, it sure would be nice to have a local support group as well, for personal contact. 

[Romona]

This is a very good topic. I have wanted to post it myself. There are no local groups that I know of around me. I work at a large facility and have people stopping me all the time asking questions. My eyes have really been opened to need for this around my area.  I am going to attend a meeting in a few weeks to see how it is run, it is the closest but an hour and a half away. . I am hoping to get a group going in October. I have contacted a kidney foundation several times to express interest and have not gotten a response. I was hoping since they have 4 groups going they could help. We are a rural area with few a bigger towns. I am going to try to get it going even if I don't hear from them.

Now, how about ideas for running a group:
Speakers?? Suggestions welcome
If you are in a group, what works for you??

Thanks st749 for posting.
MyssAnne where do you live, if you don't mind me asking.

[livecam]

Online support is very important to me.  We can share far more information with many more people online than we ever could in a live group or meeting.

This site didn't exist when I was on dialysis trying to get a transplant so I had to fly blind through most of it.

I've had a transplant for a number of years and did dialysis for some years before that but I've learned more here than anywhere else. 

Since we have to deal with this disease for life no matter what treatment we choose we need to keep sharing our experiences and learn more about the disease and it's issues.

[LightLizard]

yes, i find this site really useful, too. groups are good, i suppose, but as a patient, one can't always be consistent with attending meetings when one's energy levels are so inconsistent.
myself, i'm not reaally as social as many, i guess, so i can do without groups and gatherings. but others may feel the need to gather with others and share their experiences and ask questions.

there are some really knowledgable people here, and i find that i can get answers much faster here than i can from calling my nephrologist, asking his secretary to pass a message, and waiting for her to get back to me. that hasn't ever happened, actually. she's never gotten back to me with an answer, so i don't bother trying anymore.

i'd like to form a drumcircle, but the efforts i've made in that direction have shown me that there are people out there that are even lazier than me!

[kitkatz]

The hardest thing about a local support group is the scheduling.

[KT0930]

I'd love it if there was a support group nearby. I love IHD, and there's a ton of great information and wonderful people, but it just doesn't quite compare to the face to face contact that a support group can give. Would love it if there was something around here.

[st789]

Share our experiences and thoughts here are very helpful for newcomers.  Members can log in anytime of the day to check out info.

[MyssAnne]

Romona, sorry for the delay. I live in Central Indiana, Ball State Area! 

[BigSteve]

There are two chapters of AAKP in Southern California. I belong to the Harbor-
Orange chapter and they have two support group meetings each month.
There was an excellent meeting on August 11th with the head of the
transplant unit at St. Joseph Hosp. in Orange, CA. He gave a short
lecture and then we could ask questions for almost two hours.
Most of the meetings are primarily support for newly diagnosed patients.

[Sluff]

What an outstanding idea and great response.

[paris]

My local nephrologist office has a "kidney club" meeting once a month. I have gone a couple of times. Once when they had transplant team for a Q and A. It was my transplant co-ordinator and the surgeon I had seen.  Not many people come to the meetings.   IHD is truly my lifeline. I talk to my family about what people are doing, recent pictures, -- they hear all about everyone here.  But, on the flip side, I feel I can come here and say things I would have a hard time telling my family. When I say that I have been vomiting alot, I don't have to explain it. You all know why I am doing that.  Every question I have had, someone has had an answer for. Experience is the best teacher--someone always knows what I am going through. Can you tell that I am very grateful for this site?  I NEED this support group!