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  • Support Group Starting In 2008

    Good morning everyone. I just wanted to post that my support group will have the first meeting on January 19, 2008, and every third Saturday thereafter.

    I am feeling very positive about this group. Many Kidney organizations forwarded material so that I might be able to distribute it to others. I have some in English and Spanish. Also, I have nutritional guides, DVD's on dialysis, cookbooks, and tapes to help with CKD and with Dialysis.

    I am going to be using the Kidney School information as a guide each week. I have my Nephrologist coming to speak as well as local doctors and doctors from surrounding towns. I also am having a diabetic counsellor and a renal/diabetic dietician coming to speak during 2008.

    I have a list of groups that are on the internet to hand out in case some of the people have internet access. I have renamed the group (didn't know there was a KEYS group), so the group is now called "The KIDNEY Group." Easy, and simple to remember.My husband does great print shop graphics and such, so we have posters to put out, and he is making an easel to stand out in front of the building where we are meeting. The Chamber of Commerce and the newspapers and radios are all printing out my press release, and my doctors and dieticians and laying out flyers, as well as my local pharmacy at Wal-Mart.

    It seems that everyone is helping to make this a success. I pray that people come, because the more I find out about CKD, the more I know people need to be encouraged and uplifted. Wal-Mart is donating 25 Spiral notebooks which we are giving out for them to use as Journals, in hopes that everyone can benefit from writing down their hopes and dreams, and their feelings and share if they want at the groups for encouragement.

    I just want to thank all of you for being here to help me. I don't think I would have had the courage to start this without the surrport and encouragement I have seen on this forum.

    Blessings,
    Sue Randolph
    thekidneygroup@msn.com

  • #2
    Glad you are getting it going!! I can't wait to hear how the first session goes! Yeah, I had to go to a KEY meeting here where I live. It's Kidney Education and You...It was something to learn about dialysis before you actually start it. I'm curious about the list ot websites you are going to give out. Could you possibly post or PM them to me? Just wondering if I know them all or not.
    Shannon
    KidneyFun // Kidney Korner // Organ donation awareness products!
    If the world didn't suck...........We'd all fall off!

    Comment


    • #3
      Wonderful!! You have worked so hard on this and it will be such a valuable addition to your community. You are a real go-getter!!
      To the stars through difficulty!

      Comment


      • #4
        Thanks

        Thanks everyone - I'm excited, and I know there are several people in our small town who have CKD, and I know one has just recently been diagnosed, so I pray she makes it to our group, and one is on Dialysis (she goes 46 miles - 3x a week into San Angelo), so I'm hoping since it is on Saturday that she can come.

        I even heard from someone here, but bless her heart, she lives in Louisiana, and is clear across the other side of Texas!

        Shannon - before I go any further - I read you had found a matching donor. Yes! I'm so very happy for you. I didn't want to get busy typing and not tell you that.

        It is because of people like you, and ChefNancy, that I am able to do this. You give encouragement when one comes to the group (as do so very very many others here), and you both were ones that answered my questions.

        I do need to tell everyone - that I put in my information in the GFR and came up with Stage 2 - my last Creatnine was 1.05, I'm 62 (just had a Birthday here in December), White, female! I was shocked - it came up to 60 - at first (I don't know if you remember, I was at 35).

        I work hard watching my diet (I use Davita Helper, and also kidney recipes I find and incorporate them into the Davita Helper), I exercise 30 minutes five days a week, and take my b/p twice a day. And I bug the heck out of my doctor if I have questions when I see him. I write them down, go over everything, and then make sure I get copies of my lab tests and other tests as well. My PTH is very high, but upon searching and reading, I find that STEROIDS can cause a high reading, and I have been on STEROIDS, since 1980, and my doctor has given me Hectorol (I call it the Devil Pill-it's red and squishy, and I never feel good when I take it). I pray that will help with the PTH.

        Well, I'm just printing out a Food Diary Sheet I made up for those who don't have a computer so they can keep tracking of their calories, carbs, potassium, phosphorous, and sodium We are going to make 100 copies and give them out to those who have a need.

        I'll be back and let everyone know how it's going. In the meantime - thank ALL OF YOU HERE, for being who you are, and for being here for me and all others! You are all appreciated by me.

        Blessings,
        Sue R.

        Comment


        • #5
          Sounds like you are doing everything right. Is there not a dialysis center in your town? I feel very badly for the woman who has to travel 46 miles to get her dialysis. If I can make a suggestion, see if you can get hold of a laptop and a wireless connection card so your people can access the diet helper and other sites after your meeting.
          To the stars through difficulty!

          Comment


          • #6
            Thanks. I'm happy about it too. I started a thread on it where I will keep everyone updated HERE.

            Anyway, I take hectoral too, but mine is yellow. It's 2.5mcg. I've never had any side effects from it. What happens when you take it?
            Shannon
            KidneyFun // Kidney Korner // Organ donation awareness products!
            If the world didn't suck...........We'd all fall off!

            Comment


            • #7
              A Bull by the horns

              Sue I believe that what you are doing is a blessing to those of us who need dialysis or may need it. Knowing what is over the fence makes it much less scary and having reality, like diets explained does not make them any better to take but at least you know the rules. Imagine trying to play baseball and not knowing the rules.
              If it is possible have a patient who is on Hemo, hemo at home, Pd there to explain thinks like, it is easy to stick your self. It is possible to feel very well and be on dialysis, all the littlle quirks that make this new life, just a new normal. Its a new set of rules with new outcomes and there is every reason to believe that you will feel better, you will not be a freak, that life can go on as happy and fulfilling as you want it to be.
              I am afraid that you have grabbed hold of a thing you cannot turn loose.
              Good luck and God bless you
              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


              • #8
                How to start a Kidney support/education?

                How! The is really exciting to begin a new group. We really need all the information and support we can get via internet or just a phone call. I really which the groups could expand around the globe.

                I really thought about this, only if there was a support group here in Albuquerque, NM. for the ones that are emotional going through their first dialysis and the people that aren't quite dealing with going to a dialysis center. I've been on hemo dialysis for over a year. How I wished there had been a special kidney support group with others that are going through the similar things emotional, confussed, or questions.

                I wanted to start one for all or most of the paitents that go through a 4 hour treatment or longer to help cope with the lonelyness of being alone. To let others know that they aren't alone and we all go through something of the same at one time. I just don't know how to get it started or where?

                The ideal that I had this thought was when I was doing my treatment last night and a gentlemen that was sitting next to me had finally asked me how I became CKD when I was about to leave. He was very emotional and I can see a tear running down his face. He told me that he didn't think he could handle it and I told him it will take some time.

                I left the center and all I could think about was someone need the help of support and education that none of the health profession can give. I really felt bad for the ones that come into this without having someone to talk to that is going through something like this already or just new.

                My question is how do someone that in CKD for a year and 1 month having treatment at a Fresenia in Albuquerque, NM and there is no support group that I know about. How does on get started?

                Thanks!
                Be well,
                Rivy

                Comment


                • #9
                  Thanks everyone for your kind words, this thing has taken off like it has a mind of its own. Our radio station is broadcasting in over the airways - I received 3 phone calls yesterday, and was floored! Some of the lovely people don't even know what stage they are - just said the doctor told them they had CKD and to watch what they ate - one lady was eating canned soup each night, because she didn't know what to eat. It had 690 grams of Sodium!

                  I'm getting the butterflies, but we are ready to go - Oh - we are also going to be on KLST-TV - at noon on February 8th, to discuss the group, and in March on the radio, as March 13th is World Kidney Day!

                  We decided on getting small bottles of water for those who needed to stay hydrated, and the little packs of fresh lemon juice (like you get at restaurants, we are going to have a sign up sheet and (the three that called me do not have a computer, live alone, and have no idea what is happening) I could go kick their doctor in the pants for treating these lovely human beings this way. I just can't believe it.

                  Scott and I went over the materials and decided the first time would be just a get acquainted time and we tell you about us, you tell us about you. Then we have decided the second meeting would be going over What the Kidneys do, What causes Kidney Disease, What to do to help prevent worsening of the stage you are at, and so forth.

                  The room is paid for, and it is huge, San Angelo has over 81,000 people and no support group. My doctor called and wished me well with the start of the group - he's going to speak when we are further along.

                  We just feel that if we can help just one person, all this work will be worth it, but hey, I want to help hundreds, and hundreds of thousands, if I can.

                  How to start a group? I just did. I called to find a space we could use, and then it took off from there. It is so needed.

                  Shannon, I'm working on a website now, yep, gotta have that too, and will send you a list of all the places I have found shortly here.

                  I just wanted to tell everyone thank you, for your encouragement and for being here to support me - it's scary, but what is life if you don't take a risk on a leap of faith!

                  Also, the Hectorol makes my bones ache. It's kinda like it's cold out and I just ache and ache, but, if that baby does the job then more power to it. Also, the new year brought our $275.00 deductible for our medicines - and I had to renew the Hectorol - ladies and gents - that baby cost $368.00 for 12 pills, that's $30.66 per pill - well dang, we met my deductible with one medication! I told my doctor and the poor man kept saying, I'm sorry. I told him not to be, it wasn't his fault but the next time he saw that drug rep he could tell them that the people that use this medication need a break! He said he would.

                  He also gave me posters for protein foods and portions.

                  I pray all is going well with everyone, and again, thank you all!

                  Blessings,
                  Sue

                  Comment


                  • #10
                    I am so excited for you. You sound like you have everything so well planned out and everything in place. Are you funding the space rent out of your own pocket or are you asking for donations at your meetings? I see a great need for the kind of thing you are doing because health practitioners can only go so far in guiding people through this experience. They are important, of course, but people also need the guidance of folks who have already been there.
                    To the stars through difficulty!

                    Comment


                    • #11
                      Hi everyone - just a quick update - ChefNancy, we are paying the fee from our pocket - we just want to give to others hope that seems to get lost with CKD, and it is there - it just needs to be cultivated, nurished and love and it will blossom again.

                      The National Kidney Foundation has asked if I would take pictures and write a short article and they are going to be putting it in their next newsletter! Wow!! They too want to encourage these types of groups.

                      We are going steady, and we keep saying "Remember, check with your doctor about these things, as we pass out pamphlets to go over. He is the last word, and everyone's treament is individual." So, I hope it works, we don't want anyone changing anything, unless the doctor is in agreement.

                      I like our group, because we ALL sit and talk about how we feel, or what we do, or eat, or what's going on, or our doctors and such - it isn't a control group, we aren't raising money, or charging, it's free, and we all have the same concerns - living a better way of life with CKD.

                      I can't thank all of you enough for your kind words and encouragement. They do mean a lot to me!!

                      And I just love DaVita - I am so very grateful that it is here!! and Davita Diet Helper too.

                      Blessings,
                      Sue

                      Comment


                      • #12
                        I am so happy that your group is working out. We need more people like you. Hugs and good wishes go out to you. Keep us posted on how things are going. I will hope for you and your group that things continue to go well.
                        To the stars through difficulty!

                        Comment


                        • #13
                          That is so great Sue! I am so happy for you!!!
                          Shannon
                          KidneyFun // Kidney Korner // Organ donation awareness products!
                          If the world didn't suck...........We'd all fall off!

                          Comment


                          • #14
                            Originally posted by randolph View Post
                            Hi everyone - just a quick update - ChefNancy, we are paying the fee from our pocket - we just want to give to others hope that seems to get lost with CKD, and it is there - it just needs to be cultivated, nurished and love and it will blossom again.

                            The National Kidney Foundation has asked if I would take pictures and write a short article and they are going to be putting it in their next newsletter! Wow!! They too want to encourage these types of groups.

                            We are going steady, and we keep saying "Remember, check with your doctor about these things, as we pass out pamphlets to go over. He is the last word, and everyone's treament is individual." So, I hope it works, we don't want anyone changing anything, unless the doctor is in agreement.

                            I like our group, because we ALL sit and talk about how we feel, or what we do, or eat, or what's going on, or our doctors and such - it isn't a control group, we aren't raising money, or charging, it's free, and we all have the same concerns - living a better way of life with CKD.

                            I can't thank all of you enough for your kind words and encouragement. They do mean a lot to me!!

                            And I just love DaVita - I am so very grateful that it is here!! and Davita Diet Helper too.

                            Blessings,
                            Sue
                            Congrats on the progress, wish you success for a long time to come...
                            My Blog Site
                            Http://www.dailyhemo.org
                            sigpic

                            Comment


                            • #15
                              I think the progress you've made is totally awesome. I wish we had a support group here but there isn't one within 100 miles. I would like to see some sort of exercise program for dialysis patients, especially the "Kidney Walk" that NKF affiliates have. You might want to consider that.
                              Good luck
                              Whatever does not kill me makes me stronger...Neitzsche
                              Flip

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