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  • Couple of ideas

    My two-cents worth

    1- a section on insurance / social workers is needed
    2- a "quick response" should be available
    3- a "chat" option where you could talk to a dietitian, social worker, insurance biller, technician, RN, doctor, transplant coordinator - I think this would be the best addition. Having scheduled chats say for an hour at a time, once or twice a month for different services each time.
    4- seems like more moderators would be helpful, so that each posting would have at least one response

    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: Couple of ideas

    Okiecowgirl79,

    GREAT IDEAS!!!!!!!!!!!!!

    hopefully the mods and/or admin will see this post and reply
    I received the GIFT OF LIFE on Nov 9, 2010 thanks to my wonderful donor Laura and her family!

    Comment


    • #3
      Re: Couple of ideas

      +1 great suggestions.
      Stage 3 (GFR 35) & Diabetes.

      Comment


      • #4
        Re: Couple of ideas

        when you're able, increase the number and variety of foods on your Food Analyzer. It's a great tool - just a bit limited for those of us who don't eat much fast food.

        Also could you come up with a low K+ green salad to add to some of your menus? I notice that sometimes your total K+ and Phos levels don't reach the upper limit allowed all the time and it would be nice to have a little variety.

        Also on some of your recipes (Not the ones on Diet Helper - but the others submitted by various people) could you give suggestions for side dishes (for instance) to go with the main dishes? I mean ones like, say: " 1/2 cup steamed green beans"

        Some of those recipes look really good but I'm kinda new at this. Having to switch back and forth from the recipes to the Food Analyzer is cumbersome. I'm glad to have the tools, don't get me wrong - I really appreciate them

        thanks

        Comment


        • #5
          Re: Couple of ideas

          Having access to a social worker or nutritionist on-line would be most helpful. When someone post a comment or question they should get a response. It's not nice being ignored or feeling not heard. Where my husband receives his treatment the staff does not include family members when meeting with him. And before anyone says, he can request his spouse to be present, he has and they feel family, frtiends and spouses are not interested in patient care. His doc is worse than the rest of the staff when it comes to asking qustions. The nutritionist says, she does not have time to meet with family an the social worker is never available to ask questions.

          So it would be helpful to have somone to answer questions so I may feel I am a part of my husbands care.

          Ladybug14

          Comment


          • #6
            Re: Couple of ideas

            These are such great suggestions!


            Ladybug- You should be able to be present when your husband is meeting with his health care team. With the exception of circumstances where it would be dangerous for you to be present, you should continue to advocate for this.

            I have had many physicians tell me they preferred to meet only with the patient. I have politely informed them that as a paying consumer, I chose to have my hubs present. After that comment, I have never been refused.

            As to not being answered:

            I think the very nature of this board is that there is sporadic use of it by so many people. As far as I know, we do not have a moderator who participates daily, and that is part of the reason some questions go unanswered.

            Before she died, Chef Nancy served as an active Moderator/Participant here, and I think the boards are still adjusting to her absence. She was really wonderful. We don't currently have anyone right now who is able to fill that role.

            Additionally, it may very well be the case that people who read your posts don't feel that they have anything useful to say, so they remain silent.

            If, after a few days, you have not received a response, you can always go back to the thread you posted in and *bump* it up so it appears in new posts (in other words, just post another comment in that same thread).

            I am hopeful that at some point DaVita will put more resources into these boards, as so many people view them.

            Again, such wonderful suggestions!
            Diagnosed Stage 2 CKD (lupus) 1985
            PD March 2009-present
            On Transplant List
            Husband is a match (undecided about that for now)

            Comment


            • #7
              Re: Couple of ideas

              Annie, Thanks for the suggestion about reposting had not thought of that. I try make comments on as many post as I can and do get whatyou said about maybe not having a comment or anything new to add.

              There are many great ideas and we all are looking for someone to make suggestions and just listen. We are all a part of this community whether we want to be or not and it is our responsibility to help one another. I am here to give and seek help like so many others.

              Ladybug 14

              Comment


              • #8
                Re: Couple of ideas

                Originally posted by ladybug14 View Post
                Having access to a social worker or nutritionist on-line would be most helpful. When someone post a comment or question they should get a response. It's not nice being ignored or feeling not heard. Where my husband receives his treatment the staff does not include family members when meeting with him. And before anyone says, he can request his spouse to be present, he has and they feel family, frtiends and spouses are not interested in patient care. His doc is worse than the rest of the staff when it comes to asking qustions. The nutritionist says, she does not have time to meet with family an the social worker is never available to ask questions.

                So it would be helpful to have somone to answer questions so I may feel I am a part of my husbands care.

                Ladybug14
                I know mods and admins might NOT like this post and might delete it, but there is a site that has social workers, dietitians, PD nurse, cannulation expert and a neph who answer posts
                click on link or copy and paste it
                http://forums.homedialysis.org/
                I received the GIFT OF LIFE on Nov 9, 2010 thanks to my wonderful donor Laura and her family!

                Comment


                • #9
                  Re: Couple of ideas

                  How about fixing the posting new thread feature. Seems like it has been an ongoing problems for years.
                  Librarian
                  Father's Caregiver

                  Comment


                  • #10
                    Re: Couple of ideas

                    Hi, i have a suggestion about to maintain the forum please use some different color schemes for it ..

                    Comment


                    • #11
                      Re: Couple of ideas

                      Originally posted by OkieCowgirl79 View Post
                      My two-cents worth

                      1- a section on insurance / social workers is needed
                      2- a "quick response" should be available
                      3- a "chat" option where you could talk to a dietitian, social worker, insurance biller, technician, RN, doctor, transplant coordinator - I think this would be the best addition. Having scheduled chats say for an hour at a time, once or twice a month for different services each time.
                      4- seems like more moderators would be helpful, so that each posting would have at least one response

                      That's a great idea.

                      Comment


                      • #12
                        Hemodialysis Concentrates
                        https://www.renaconpharma.com

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