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  • First post with questions

    Thanks everyone in advance. My best friend is end stage with no prior clue it was coming. Shock and everything all at once. I've been giving away foods that aren't renal friendly and replacing with foods we can have... and feeling like I'm going totally frazzled.

    I have many questions but the first one is about a colonoscopy the VA doctor said he'll need before he can have a transplant. We go to the kidney doctor soon and can ask then but I'd like to know the reason for this? And I have other questions but I'll keep this manageable for the time being.. he doesn't have any low bowel troubles so I'm not sure why this is necessary. He's 54.

    We're learning how to control the phosphorus levels through diet. I am not managing very well today... He is taking it better them me.
    I'm having sympathetic back pains. It's been about a month since everything changed and I'm just now waking up....

    I must have really angered the VA doctor, he said that I was not qualified to be his health care power of attorney because I told him that lithium caused his renal failure, that caused his HBP and not the other way around. Granted, I was adamant about my belief. Adding that it was he, who believes his kidneys failed under so much lithium for so long. I just believe him and as a health care power of attorney, I thought I was supposed to be supportive and help him with his doctor visits... The doctor didn't know that I have seizures from a head injury.

    And anyway, now I'm paranoid that the VA will not treat him well if I become his H.C. power of attorney. I'm a nervous wreck.

    Kind Regards, CP

  • #2
    Re: First post with questions

    I am sorry about your friend. Is he well enough to ask the questions himself? If he went from healthy to complete renal failure, the Dr. may be covering all their ground with multiple tests to find out what happened. I don't know much about lithium. Have you researched it on the internet? I will see what information I can find. Some days the frustration seems too much to take. And it sounds as if you have your own health issues too. Once I tore into my Dr. of 20 years. I was so mad at him. Mostly hurt. I ended up having to talk to him to clear the air. You might consider having a needed conversation with your friends Dr. for everyones benefit. I'll be thinking about you and your friend. Take care.

    Tonia
    May you always have Love to share, Health to spare, and Friends that care


    Acute Kidney Function Loss 12/07 - GFR 39
    Current GFR 46 - Stage 3 - Controlled HBP

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    • #3
      Re: First post with questions

      Thank you for responding Tonya. I met him over six years ago. He was experiencing intolerance to so many things like caffeine, what he thought were plants and grass pollens, animal dander and having major leg cramps and super migraines. I knew then that he was having troubles with electrolyte balances but never in my wildest imagination that these were due to kidney malfunctions.

      So can caregivers post in other areas?

      It was lithium alright. And he doesn't have bipolar. It was a ploy to rift him out of the military because he was and is a kind peaceful non violent person, and very spiritual. He was mistreated so badly that the stories freak me out and I can't listen to him describe what he went though from officers handling him.

      Kind regards,

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      • #4
        Re: First post with questions

        Your friend sounds fortunate to have you so willing to help and advocate.
        The colonsocopy is a part of the pretransplant checks. My clinic required a list of tests including tuberculosis, chest x-ray, EKG, a dental exam and a mamogram for women and a colonoscopy for those over 50.
        There are a great number of experienced caregivers and patients here. Keep coming back for support
        Diagnosed FSGS 1998
        Related Transplant 2004
        Unrelated Transplant 2009

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        • #5
          Re: First post with questions

          Thank you kindly.... :0)

          So do caregivers post here only or can they go other parts to ask questions? I am getting confused about what some can eat, how ,much liquids etc.. while, others can't, there seems to be many differences.

          Kind Regards, CP

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          • #6
            Re: First post with questions

            Topics are sorted, but you'd be welcome anywhere!
            Everything varies depending on a person's type of kidney disease and what else they might have. Diabetes is common with CKD, as well as high cholesterol. People are at different stages as well, some on different types of dialysis and some post-transplant. Diet considerations are also based on the patient's labs.
            Is your friend able to see a renal dietician? It is important to see someone that works with kidney issues. Start with the link below for Davita diet helper.
            Diagnosed FSGS 1998
            Related Transplant 2004
            Unrelated Transplant 2009

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            • #7
              Re: First post with questions

              My husband is being treated at the VA also. I usually do not go to his doctor appointments except for now going to urology, nephrlogy and neurology for a brain tumor he had in 2002. Have him either ask his primary care or the urologist (which ever appointment he has next), for a referral to a nephrology dietician or a dietician who can explain the special diet needs. Go with him since you are helping him with his diet. I had one dietician who questioned me being there when he was first diagnosed with diabetes as to why I was there? I told her I was the one who bought the groceries and cooked most of the meals - hello? - she made me sit along the wall to where I was behind them and spoke to him as if I wasn't there. I just made notations in the notebook I had brought with me and waited for her to say do you have any questions? He didn't but I did.

              If you have the legal paperwork for medical power of attorney and you and he feel you are not being treated fairly, go to the Patient Advocate at the VA Hospital and speak to them or you can usually find someone from DAV there if you are not getting any help there. They can help with paperwork and advocate for him also. Since you will have Power of Attorney it behooves you to be as knowledgeable as possible. Again if you ask the doctor a question and he ignores you, go to the Patient Advocate with your friend. At this time, it is helpful having somone else in the room with the doctor because the disease progresses differently for different people. It helps if someone else hears the same info. Just switch places and ask yourself what you would want if you were in his shoes instead.

              Since you have other health issues, it behooves you to go for counseling yourself and if you have any depression to get that handled also. I see a counselor once a month that my insurance pays for. Sometimes I have seen her twice a month if there were extra stressors going on (before his various surgeries). My husband has had a lot of health issues for the last 10-15 years and at times I was working full time and having too much to handle. Right now I am his caregiver, cook, chauffeur, etc. That is my full time job.

              I have had to advocate for my husband and my dad and the only way to do that is keep yourself informed. Also, I was depriving myself of certain nutrients because I was keeping them out of the house so he wouldn't eat them, and it made me get more depressed than I was with muscle aches - due to not enough potassium for me. Now I eat those forbidden items when he is out of the house volunteering or at a veteran's meeting.

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