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How do I deal with a relative with end stage renal disease?

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  • How do I deal with a relative with end stage renal disease?

    My brother has had ckd since a young child. He went on dialysis at the age of 19 and had a transplant from my father at about 21. He lost that kidney within a year and has been on dialysis since. He is now 30. His health has deteriorated slowly and he has to my knowledge done what he can to be as healthy as possible. Recently he has had his second parathyroidectomy which took all of it. He now can not get enough calcium and takes shots of hormones to replace what was taken out. He regrets going along with the doctors advice since he now has the risk of seizures and horrible muscle tightening. He really is miserable with this disease and it affects his every moment. He goes through periods of depression and suicidal thoughts because 'his life sucks" and his body is slowly dying. Now he has had this condition and been on dialysis all of his adult life. I don't wish his life on anyone. He feels he can not get any decent job, girlfriend or have any foreseeable future. He is not a positive person. He gets this from my dad, be it hereditary or environmental. I just wish he could look at things like many others on this forum do...positively. I know his disease sucks but there is nothing that will magically make his life different. I feel bad that he deals with issues like death at his age. I don't own a magic wand though. I keep waiting for the day when he will "grow up" and realize self pity and negativeness is counterproductive. Does anyone have any advice or experience with these issues? I am wondering why the posts I have read all seem to paint dialysis life as rosy. No one seems to complain about how life on dialysis affects their bodies. I suppose that is not what everyone needs to read about either. I can say I have heard it too many times myself from my brother.

  • #2
    Originally posted by brotherneedskidney33 View Post
    My brother has had ckd since a young child. He went on dialysis at the age of 19 and had a transplant from my father at about 21. He lost that kidney within a year and has been on dialysis since. He is now 30. His health has deteriorated slowly and he has to my knowledge done what he can to be as healthy as possible. Recently he has had his second parathyroidectomy which took all of it. He now can not get enough calcium and takes shots of hormones to replace what was taken out. He regrets going along with the doctors advice since he now has the risk of seizures and horrible muscle tightening. He really is miserable with this disease and it affects his every moment. He goes through periods of depression and suicidal thoughts because 'his life sucks" and his body is slowly dying. Now he has had this condition and been on dialysis all of his adult life. I don't wish his life on anyone. He feels he can not get any decent job, girlfriend or have any foreseeable future. He is not a positive person. He gets this from my dad, be it hereditary or environmental. I just wish he could look at things like many others on this forum do...positively. I know his disease sucks but there is nothing that will magically make his life different. I feel bad that he deals with issues like death at his age. I don't own a magic wand though. I keep waiting for the day when he will "grow up" and realize self pity and negativeness is counterproductive.

    Does anyone have any advice or experience with these issues? I am wondering why the posts I have read all seem to paint dialysis life as rosy. No one seems to complain about how life on dialysis affects their bodies. I suppose that is not what everyone needs to read about either. I can say I have heard it too many times myself from my brother.
    Of course, there's a bunch of us on this forum doing dialysis for a long time, for example, I have started dialysis in 1978 and I can say that you can live a long satisfying life on dialysis. Dialysis is not Rosy, its a hard life but somehow we learn to live with it. Just as your brother tried to learn to live with his new kidney transplant he can also learn to live with dialysis. I also had a transplant that lasted almost 3 years, since then I have been only doing dialysis.

    There's some great news too! He can now have the option to do dialysis at home, controlling his own life and schedules....he seems quite young, am in my late 30s. Any possibility to get him to come over here and speak with us? I think if you can get him over here he will learn alot from us....


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    • #3
      Re; Gustine

      my brother is pretty stubborn. He thinks he knows it all or at least everything he has gone through and no one but another patient can understand it. I have done more research into the disease than anyone else in our family and know the reality of the bodies processes. I am positive and tell him to do what makes his life enjoyable. I think when his expectations in life match what is obtainable he will be happier.... hopefully. He wants to be normal. That will never happen. he can obtain what is normal for him. I think he feels as if he accepts his life he will give up... suicide. He has attended college and had a 4.0 in a math science major. He wanted to be a Dr. His body really does deteriorate. I am wondering if he can survive into his 50's without a transplant. I wonder if he is doing all that he can. He eats a very limited diet and takes all the medications but where one does what it needs to it seems everything has a downside effect. Sort of damned if you do damned if you don't. It just seems frustrating to see him struggling for so long 8-10 years with anger and self pity.
      Gustine, do you think different levels of healthy in renal disease affects longevity? I just don't see my brother living 30 more years with his body deteriorating the way it does. He is a 30 year old "old man," body wise. My brother does do the night time dialysis and does any exchange he needs during the day occasionally. He has had probably every type of dialysis available and the periotoneal (i think that's what it is) dialysis is what he prefers. I don't blame him. It is the most natural schedule and lets him live "normal" during the day. He even had a dialysis site in his inner leg.
      I will mention these discussion boards to him but it may fall on deaf ears. He may be disfunctionally happy in his misery and need to come along in his own time. Thank you for taking the time to respond.

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      • #4
        Ask your brother to check out a post on this site that you read and do not understand. It may tweak his interest and get him to read. Everyone at this forum has health issues with Kidneys and other illness as well. Almost everyone here responds with excellent information and resources and everyone here does understand the pain and anxiety that goes with kidney disease. All you can do is "try". I understand your frustration at not being able to help him but he must help himself, all you can do is suggest the tools. Our loved ones do not always respond to our loving guidence but we know we have tried our best to help. Nan

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        • #5
          Originally posted by brotherneedskidney33 View Post
          my brother is pretty stubborn. He thinks he knows it all or at least everything he has gone through and no one but another patient can understand it. I have done more research into the disease than anyone else in our family and know the reality of the bodies processes. I am positive and tell him to do what makes his life enjoyable. I think when his expectations in life match what is obtainable he will be happier.... hopefully. He wants to be normal. That will never happen. he can obtain what is normal for him. I think he feels as if he accepts his life he will give up... suicide. He has attended college and had a 4.0 in a math science major. He wanted to be a Dr. His body really does deteriorate. I am wondering if he can survive into his 50's without a transplant. I wonder if he is doing all that he can. He eats a very limited diet and takes all the medications but where one does what it needs to it seems everything has a downside effect. Sort of damned if you do damned if you don't. It just seems frustrating to see him struggling for so long 8-10 years with anger and self pity.


          Gustine, do you think different levels of healthy in renal disease affects longevity?

          I think it depends on various factors, but the most definate answer I can give you is that more frequent dialysis can prolong your brothers life for many years to come. If thats the case he may want to research into Nocturnal Hemodialysis. Second to that is Short Daily Dialysis ( I do this method)


          I just don't see my brother living 30 more years with his body deteriorating the way it does. He is a 30 year old "old man," body wise. My brother does do the night time dialysis and does any exchange he needs during the day occasionally. He has had probably every type of dialysis available and the periotoneal (i think that's what it is) dialysis is what he prefers.


          Peritoneal Dialysis is also great option for most people, no need to deal with needles. In my case I was not a good candidate for PD so my only options was either doing incenter or do more frequent dialysis at home. I chose home, no place like home!



          I don't blame him. It is the most natural schedule and lets him live "normal" during the day. He even had a dialysis site in his inner leg.
          I will mention these discussion boards to him but it may fall on deaf ears. He may be disfunctionally happy in his misery and need to come along in his own time. Thank you for taking the time to respond.
          Alrighty, your very welcomed!
          My Blog Site
          Http://www.dailyhemo.org
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          • #6
            Thank you for your advise Nan and Gustine. I will ask my brother if he has considered the nocturnal dialysis. I am not sure which is better for the body the nocturnal or PD. Probably the nocturnal because I believe that deals through the blood. I know appearance is an issue for him and any device attached to his arm is not his thing. He is okay with the cord in the belly. Though ocasionally he does get peritonitis. Thanks again guys.

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            • #7
              Originally posted by brotherneedskidney33 View Post
              Thank you for your advise Nan and Gustine. I will ask my brother if he has considered the nocturnal dialysis. I am not sure which is better for the body the nocturnal or PD. Probably the nocturnal because I believe that deals through the blood. I know appearance is an issue for him and any device attached to his arm is not his thing. He is okay with the cord in the belly. Though ocasionally he does get peritonitis. Thanks again guys.
              Hi. I know this post is a bit old, but I feel I should post too. If you haven't already mentioned this website to him, I think saying that there is a site where HE can help OTHER patients might make it a bit more appealing, and it's not as if you are lying. If he has been through all the diff types of dialysis and transplant, then he really must be a well full of knowledge he can share with us. It will make him feel more important and useful being able to help others like him, and give him a sense of normalcy since we all have kidney disease here, and maybe he will even talk to us about the depression and all.

              On a more personal note, it sounds like he and I have similar stories, except he is a bit ahead of me. I started dialysis (PD) when I was 18 and got a transplant from my fiancee a couple of weeks before I turned 21. That was just this past May. So far the kidney is working great though, so I hope that it doesn't fail after a year. Is your brother able to get another transplant? Just wondering why he hasn't pursued that road again. It really is better than dialysis.
              Shannon
              KidneyFun // Kidney Korner // Organ donation awareness products!
              If the world didn't suck...........We'd all fall off!

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