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  • #16
    Re: Why do people not respond to posts?

    Earthsong, things do get better with time. You get used to the diet and the restrictions and you learn to manage your energy. Things actually got a lot better for me after I started dialysis. I have a lot more energy and generally feel a lot better than I did when I was in Stage 4. I know what you are talking about -- lack of energy, nausea, generalized weakness, etc., etc. I have been there, done that, and bought the t-shirt. Many of the other people on this site are in the same position. When you are first diagnosed things are so overwhelming and at the same time you feel so generally awful that it is hard to cope. Just hang in there, try to get used to the diet (which will make you feel a lot better) and try to set limitations on what you will do in a given day. Things will get better.
    To the stars through difficulty!

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    • #17
      Re: Why do people not respond to posts?

      Hi all,

      I definitely agree that finding out about kidney is distressing. Learning that dialysis is fast approaching is even worse. Actually beginning dialysis is the scariest thing I have ever encountered. Now I look back and sometimes am able to give a little giggle at the past. This site has been a salvation for me at times. Even though I have transplanted, problems still arise and I know that my friends here will support me in any way they can.
      "Within every adversity lies a slumbering possibility"
      Linda
      Tx: 7/28/2005
      St. Louis University Hospital

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      • #18
        Re: Why do people not respond to posts?

        Originally posted by jmaryz View Post
        Earthsong,

        I wanted to answer your question about work. When I was on dialysis (I did PD on a cycler while I slept at night) I worked full time as a teacher. Now that I have had a transplant after being off for three months (usually it's 2 but schools are a particularly germ filled environment) I plan to go back to work.

        As for feeling "normal", I'm not sure what that is. Many people have health issues that they have to deal with and I think you have to cope as best you can. I have found much comfort reading the posts on this site.
        It is nice to see your post. How are you doing with the post transplant period. I find it does have it's ups and downs but still worth the effort.. I had a 3 month cold but that seems to have finally left. have you gone back to work yet?

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        • #19
          Re: Why do people not respond to posts?

          Hi Marilyn,
          Even though I have had a transplant, I still read all of the posts and try to respond when I feel I can contribute something.

          Sorry to hear abut your cold - three months is a long time. Do you know how you got it?

          I am going back to work Feb. 2nd. and am a little worried that I won't have the stamina to make it through the day. It will be great to see the students, however, and also the other people I work with.

          The Drs. think I pulled a muscle as I have some pain in my groin area but it seems to be getting better. My creatinine has stayed at 1.6 for awhile now so they don't seem very worried about it.

          Have you had any problems post transplant other than the cold?

          Good hearing from you.

          Joanne

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          • #20
            Re: Why do people not respond to posts?

            Hi jmaryz,

            It is wonderful that your creatinine stays at 1.6. What did you do to maintain your level?

            pal

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            • #21
              Re: Why do people not respond to posts?

              Originally posted by jmaryz View Post
              Hi Marilyn,
              Even though I have had a transplant, I still read all of the posts and try to respond when I feel I can contribute something.

              Sorry to hear abut your cold - three months is a long time. Do you know how you got it?

              I am going back to work Feb. 2nd. and am a little worried that I won't have the stamina to make it through the day. It will be great to see the students, however, and also the other people I work with.

              The Drs. think I pulled a muscle as I have some pain in my groin area but it seems to be getting better. My creatinine has stayed at 1.6 for awhile now so they don't seem very worried about it.

              Have you had any problems post transplant other than the cold?

              Good hearing from you.

              Joanne
              It is good to hear from you. I also still check in from time to time and try to contribute because I received so much support at this site.
              I'm sure I had more than one cold.. it's just that they ran into one another. Finally got a puffer to help clear the lungs and now am doing well. There are so many virus's out there who knows where they come from. I now wear a mask every hospital visit to the neph.
              My creatinine has stayed very stable arond 102-110 )that's candian measurement which I think is like 1.2. My neph is very happy with that, and my BP is super as is my cholesteral. Get a lot of low energy days and sore muscles but the weather is so cold here that I am not excercising like I should. When you mentioned the pulled muscle, I also pulled a back muscle and Dr said the steroids can affect the muscle tissue and that I need to excercise to buld up my strength.
              All that being said I am doing very well and volunteering at the library again and helping with meals on wheels. It is just so nice to be with friends again. Take care and be really good to yourself when you go back to work. Students can be amazingly supportive when they know you need them. Let us know how it goes and good luck

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              • #22
                Re: Why do people not respond to posts?

                Pal, I think my creatinine level just has to do with my new kidney as I haven't been doing anything special post surgery.
                I'm sorry but I don't remember where you are on this CKD journey.
                If your creatinine is low now and you want to delay dialysis, I would make sure to follow a renal diet.
                hope this helps.

                Marilyn, I hear you about exercise but I usually walk and it has been bitter cold here in upstate NY so I haven't been out... I do plan to check out the pool at the local highschool but think that the hours available to the public are pretty limited.
                That's great that you volunteer at the library - it's such a wonderful resource and great place to get books, cds, and movies (and considering these tough economic times, it's all free!)
                A creatinine of 1.2 is awesome, did you have a live donor? (can't remember from your posts but was it your husband?) It seems like with a live donor, the creatinine is lower but that is based on a small sample of three people that I know.

                Thanks for the words of encouragement about work.

                Joanne


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                • #23
                  Re: Why do people not respond to posts?

                  WOW so glad I read this thread!
                  I am a relative Newbie as well. Welcome home.

                  I love what Cassie said "we're in this together! What we know about we share. Some are on dialysis, some transplanted, some fighting dialysis with all they have."

                  As far as feeling 'normal', I was so sick that I that I thought 'nauseated and tired' WERE my new normal. I jumped in to the renal diet plan desperately, and I am so grateful it worked for me.
                  " I may not be where I want to be, but I'm sure glad I'm not where I used to be"
                  The new normal for me keeps evolving, and depends on how well I can manage diabetes and CKD.
                  It's a journey not a destination , I guess.


                  nycbluekeys

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                  • #24
                    Re: Why do people not respond to posts?

                    I find that I hardly ever post here and feel people should not be insulted if everyone doesn't post. I mean for myself I belong to a number of forums but only have time for my own that I run and 2 others I help moderate (all 3 are kidney patient forums). I still try to make it around here when I can and have found that people here generally answer when they know the answer.

                    I would rather an informed answer from experience or someone simply saying they don't know and suggesting who you should talk to more than if a bunch of people answered and didn't know what to say and misguided me. Still, I have noticed there are a great number of people here who are very helpful in the renal community (hi Gus, ChefNancy and everyone!)
                    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

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                    • #25
                      Re: Why do people not respond to posts?

                      Originally posted by jmaryz View Post
                      Pal, I think my creatinine level just has to do with my new kidney as I haven't been doing anything special post surgery.
                      I'm sorry but I don't remember where you are on this CKD journey.
                      If your creatinine is low now and you want to delay dialysis, I would make sure to follow a renal diet.
                      hope this helps.



                      Good morning jmaryz,

                      My creatinine is 2.1 and GFR is 25. Thanks for your input. I would love to delay dialysis. Since chefnamcy mentioned renal diet on one of her responses to my earlier post, I have been limiting my protein intake. For two months, both my creatinine and GFR remain the same. I am not quite sure if this is normal.

                      pal

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                      • #26
                        Re: Why do people not respond to posts?

                        I started dialysis in june, i do home hemo,this forum gives me lots of information,i have also wrote private messages to some of you ansalways got an answer, i have no family with kidney problems, my freinds have no idea what a dialysis person goes through. I did run across a freind lately that acknowledged she knew i was on dialysis, she said '' i couldnt be on dialysis, i couldnt sit there that long! I said" its not the sitting that gets me , its the needles, she said ""oh! I didnt know you have to have needlesfor dialysis!!!!! So i hope all you see how important these forums are to me. My freinds dont have clu!!!!!!!!

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                        • #27
                          Re: Why do people not respond to posts?

                          Hope you feel more at home swramsy. Where is your post? :O) I didn't see this post until now, my opinion on why people don't answer some posts is they don't know the answer. Also this isn't a paid service, no one is obligated to post. That said I have found the people here to be extremely welcoming and informed. I am very happy I found the site. I suppose you could always reply to your post with a ~bump~ post to put it in front one more time; I know in my circumstance I work many hours of the day and usually only have time to post after working, cooking dinner, cleaning, feeding dogs and settling everybody and then here I am.

                          Good luck to you.

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