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  • Support Groups

    So many people have asked about support groups. I have a few questions for you. Your responses will help me and others who are starting local support groups.

    1) would you be willing to sign up for field trips? such as to a hospital transplant center, grocery store, dietitian office, vascular center, dialysis clinic

    2) would you be interested in non-related outings (just to get to know each other) such as bowling, mini-golf, movies, plays, or ball games

    3) would you be willing to help with fund-raisers so that the group can have things like parties?

    4) what do you want from the meetings?

    5) what type of guest speakers would you want to hear from?

    Any other info will be taken into consideration as we plan. We want to help each other!

    in center hemo dialysis since May 2009
    Sudden ESRD - non diabetic (but have 2 at home)
    turned down for list "lack of support" WHAT!!! starting over at different transplant center)

  • #2
    Re: Support Groups

    I am new to this support group. I do dialysys at home (HEMO) and am looking for other people that are doing the same thing.

    Comment


    • #3
      Re: Support Groups

      Hi OkieCowgirl79,

      We started a support group at my unit. It was pretty clear to me that not many folks were interested on a face to face group. Others didn't feel like coming back to the center for meetings. Maybe they associated it with "Doctors and medical procedures" We had the meetings monthly on a Wed evening, some patients had had hemo that day and were too tired to come back for a meeting.

      These outings and/or fieldtrips you mentioned would have to be done on a Sunday to accomodate hemo patients, since it's the only day the center is closed.

      As far as guest speakers are concerned, a dietitian would be great to have since many of us had hard time adjusting to the diet in the beginning.
      A transplant Dr/RN would be great too for those interested and with questions regarding how to get on the list and how the transplant will work, as well as TX meds side effects.
      A financial/insurance specialist would be great since we know that some dialysis patients at some point might need to take some time off and need to be aware of what's available out there. we recently had such a meeting in a group I attend, I was surprised at the available resources we have, although they're not cheap for somebody on dialysis or TX.

      Have a great day!

      Marina
      I received the GIFT OF LIFE on Nov 9, 2010 thanks to my wonderful donor Laura and her family!

      Comment


      • #4
        Re: Support Groups

        My names turon and ive been on dialysis since 9. im 30 now . ive done all forms of dialysis 1 kidney awaiting second....ive decided to form a ladies outreach support group. ive gotten a very warm response. We'll be going on outings picnics shopping etc. ive had the idea for well over 2 yrs due to my grandmothers death i shelved it. But theres hope for the women in this area alex virginia. it;s open to all dialysis patients women all over the us. Interested email me @ turon30@hotmail.com. Ive hope that it can show more tha n just dialysis that we have normal fun lives!!!
        The 1st meeting is on this saturday at 4pm for the dmv area patients. im going to put my all into making this a success...WITH OPTIMISM WE CAN WITH CONFIDENCE WE WILL-TURON HAYES

        Comment


        • #5
          Re: Support Groups

          It is never a good idea to post your email address publicly on ANY forum but use the forum given Private Message system to keep you and your email address safe. Posting your email address publicly on any forum is like putting your phone number out on billboards. Just saying..
          Angie
          Kidney KornerDialysis Ethics Forum Kidney PixAwareness Shirts KidneySpace Donor Search
          I will be walking a Kidney Walk in Ontario Canada Sept 18th 2011
          • Peritoneal Dialysis = 4 yrs
          • Hemo Dialysis (in center) = 2 yrs
          • 2 kidney transplants = 1990 - 2001 & 2007 to present

          Comment


          • #6
            Re: Support Groups

            I went to a class given by the local davita and askd them about local support groups and was told that it was against the law can you please tell me if this is true and if so why

            thankyou, bmd49

            Comment


            • #7
              Re: Support Groups

              Originally posted by bmd49 View Post
              I went to a class given by the local davita and askd them about local support groups and was told that it was against the law can you please tell me if this is true and if so why

              thankyou, bmd49
              It might be against the "DaVita law".
              Unless they're illegal/against the law in your state. I know for a fact they're not against the law in California.

              We started a support group a few yrs back at my unit sponsored by the hospital. The hospital/medical center let us use a meeting room and my dialysis nurses attended the meetings.
              I also attend another group (when time allows) it's by a non-profit organization and sponsored by a medical health center, which allows them (us) to use one of their meeting rooms.

              There's also TRIO (Transplant Recipient International Organization) it's a nation wide organization with chapters in each state. The one in my area meets 1x/month at a local Hospital.

              But, like I said, it might be illegal to have support groups in your area.

              Take care!

              Marina
              I received the GIFT OF LIFE on Nov 9, 2010 thanks to my wonderful donor Laura and her family!

              Comment


              • #8
                Re: Support Groups

                I believe that as an American you have the RIGHT of assembly and once assembled you have the RIGHT of free speech. I believe that's all there is to that subject.
                Cicero
                May God have mercy on us all

                CK

                Idiopathic globular membranous nephritis 1999-2006
                Feb 2006 Dx about 1-2 yrs before dialysis. Dialysis start 6-2006
                Chest Cath 4 mos in center hemo dialysis
                Fistula, button holes, self stick days 07-09 in center hemo
                Graft nocturnal hemo 4Q09 to present

                Comment


                • #9
                  I would love to be involve in a support group with people like me that can help and give suggestions on how to accept and deal with esrd. It has taken my seven years to accept my condition. I was trying to ignore it and act as if it wasn't happening and over the years I have to say I have become mire and more depressed. I turned to alcohol and drugs. Now thise things don't work anymore in fact they make me feel worse. I
                  think if I got involved in a support group with people who can relate to my situation it would be

                  Comment


                  • #10
                    I have been searching online all night I'm trying to find a website where I can disscuse and get help with being on dialysis and advice on how to deal with depression and all the other isues I'm having with my health so can somone please point me in the right direction please.

                    Comment


                    • #11
                      Originally posted by Dominique61285 View Post
                      I have been searching online all night I'm trying to find a website where I can disscuse and get help with being on dialysis and advice on how to deal with depression and all the other isues I'm having with my health so can somone please point me in the right direction please.
                      Hi, Dominique! I'm Caitlyn, a DaVita employee and administrator of this site. Welcome to the myDaVita Community. I'm sorry to hear about everything you've been going through. I hope this site can help give you the support you need.

                      I encourage you to check out some of the other discussion threads and maybe join a group or two. There are several active discussion threads relating to depression and anxiety for those with CKD. I'm sure others would benefit from hearing your story.

                      Here is an article on the DaVita website relating to depression in CKD patients: http://bit.ly/1jI6S0a

                      I hope this helps. Please feel free to reach out to me with any questions or concerns about the site. I hope you're feeling better today!

                      Thanks,
                      Caitlyn

                      Comment


                      • #12
                        hello my name is herman,i go to davita dundalk every time i m on the machine near the end my stomach starts to pull tight like some one is choking my belly ,it makes it hard to breath i need to find some one having the same problen and how they helped it

                        Comment


                        • #13
                          That is one sign that your dry weight has been reached and they are taking too much off. Tell the tech and ask what your BP is. (mine would be 60 over 40). They will put more liquid back into you and that feeling will go away. Here are the signs. Your stomach starts feeling funny and you might feel warm or start sweating. Could have more cramps in stomach or legs and might feel like throwing up. Then you will feel dizzy and if you are like me, I see dots (blue) in the lights and celling. Then I am ready to faint. That happened once when the techs were not close and they kept asking me as the put liquid back in if I was alright and not to completely faint out. (as if I had a choise) I have had these feelings and dots many times when they didn't know what my dry weight was or a nurse thought they should take off more than 1.8K. That is what I gain and if they go below that weight, these symptoms start with low BP. On my orders they have a note telling nurses not to go under 91.0 K. Usually, I leave at 90.8 feeling good and 90.5 not so good. Hope this helps.

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