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  • Local Support Groups

    Why isn't anyone interested in monthly support groups that bring together patients, caregivers and professionals to address questions and issues that involve patient care. I tried to start a support group for local patients but no one seemed interested least of all the Doctors who have patients represented at the local treatment centers. It baffles me that the Doctors are there to assist the patient with their treatment and diets needs but don't bother responding to an invitation to join a meeting to develop a solid program that would benefit their patients and themselves all in the same time period. Ant suggestions from patients or professionals would be appreciated.

  • #2
    I am interested... Just started... Have had two sessions of dialysis

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    • #3
      Not trying to be argumentative, but you have to consider how much time DRS spend doing what they do. Patients on the other hand is a different situation.

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      • #4
        I think it is a good idea for patients but as for the doctors IMO it is just their job and they want to go home and not dwell on their work after hours. I am not on dialysis but would like to see a group in my area for at least an exchange of info. and to meet people in the same situation. I have thought of starting my own group.

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        • #5
          Originally posted by 1scaredycat View Post
          I think it is a good idea for patients but as for the doctors IMO it is just their job and they want to go home and not dwell on their work after hours. I am not on dialysis but would like to see a group in my area for at least an exchange of info. and to meet people in the same situation. I have thought of starting my own group.
          If you ever need motivation to avoid dialysis go to a dialysis center and ask for a tour. They are such a painful place to visit, just imagine the people that have to go there 3 times per week. That was one of the biggest factosr for me to start PD, I could not stand all the misery at the centers any longer. When my PD gives out (if I have not gotten my transplant yet) I will start on Home Hemo dialysis.

          Also, again not trying to be argumentative, but until you, or anyone, has to go on dialysis; non dialysis requiring CKD is easy living. I know, I dealt with CKD for over 11 years and the day I had to start dialysis my world changed completely.

          Don't get me wrong, every time you do a dialysis treatment it is saving your life. But who wants to be forced to save their life 3 - 7 times a week? That is one reason some people stop dialysis and let the disease take their life, I have seen that happen also and it is a painful way to die.
          Last edited by Loganwon; 12-05-2015, 08:27 AM.

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          • #6
            I'm not yet on PD and would love to find an offline support group in the Atlanta area. The forums often appear bleak, and I badly need to see other people who are facing each day with positive energy and a will to thrive, even in the face of CKD.

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            • #7
              I live in Lincoln, Illinois and am looking for a support group. I'm not above starting one. My husband is stage V renal failure and has dialysis 3 times a week. He's been on the transplant waiting list for seven years. He's getting discouraged. Can't say more right now without crying. He got upset and made a rash decision and took himself off the list because he has a new nurse who told him he's at the bottom of the list again. I couldn't believe he did that! So he's going in tomorrow to talk to someone. Whew! I hope I'm making sense, this has been hard Support groups are needed that's for sure. If anyone knows of one in my area please feel free to let me know. I'm here if anyone needs to talk.

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              • #8
                Hello everyone.

                American Association of Kidney Patients has information on in-person dialysis groups on their website. ( aakp.org)

                I am also looking for a meeting closer to me in my local area. My plan is to call/visit the local dialysis center to hopefully find this info.

                If that doesn't work, then I will use craigslist (events) to invite interested persons to participate in a telephone conference call (set up through freeconferencecall.com ) Once there is enough interest, we'll go from there to set up a local in-person meeting.

                I'll post here from time to time (maybe weekly-ish) in order to let you know how it's going, and what I'm learning through this process.

                Best wishes to you all.

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                • #9
                  Originally posted by SunshineRay View Post
                  Hello everyone.

                  American Association of Kidney Patients has information on in-person dialysis groups on their website. ( aakp.org)

                  I am also looking for a meeting closer to me in my local area. My plan is to call/visit the local dialysis center to hopefully find this info.

                  If that doesn't work, then I will use craigslist (events) to invite interested persons to participate in a telephone conference call (set up through freeconferencecall.com ) Once there is enough interest, we'll go from there to set up a local in-person meeting.

                  I'll post here from time to time (maybe weekly-ish) in order to let you know how it's going, and what I'm learning through this process.

                  Best wishes to you all.
                  Hi SunshineRay! Have you attended a no-cost Kidney Smart class, where you can learn more about kidney disease, treatment options, diet and more? Find one in your area here: http://bit.ly/1LjgVbx. It's also a great place to connect with others who are going through the same thing as you. I hope this helps, thank you!

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                  • #10
                    Is anyone interested in a group for sharing online - maybe on Facebook - I see some have attempted to be started but none seem to have worked - when I was a caregiver for LBD and later a part of organizing the LBDA we found an online group very conducive to sharing - the nice thing about it was free form posts with responses in a chronological order. - all the posts could easily be searched with one search subject for something relative to one's current problem or experience

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