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Newbie and Needing Support

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  • Adelelea
    replied
    Hi I too am new to this in fact have just been told my count is 58 and that puts me in stage 3. My doctor has requested a second blood test and I am very confused at the moment as I don't know what is coming next. All my other blood tests were fine. I am not diabetic, my blood pressure is normal and no family history. I would really appreciate any information.

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  • dogparkdave
    replied
    Take the anemia injections, low side effects.
    Of course u are worried, normal.

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  • eaglewoman
    replied
    Re: Newbie and Needing Support

    chefnancy,
    Thanks I will check with the Neph before I go again to see
    what she thinks.

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  • chefnancy
    replied
    Re: Newbie and Needing Support

    As I said earlier, I get my iron infusions during dialysis and it is only 100 units each time. Maybe they tried to give you too much at one time. I do not get any swelling from my iron infusions during dialysis. If I were you I would certainly not go for another one until you find out the cause of the swelling.

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  • eaglewoman
    replied
    Re: Newbie and Needing Support

    Went Mon for the iron infusion, quite an experience.
    From 8-9am they gave me a saline drip, from 9-1:30pm they gave me the 1st bag of iron (400 units) from !;30-2:30pm they gave me the second bag (100units). As soon as they started the second bag, my hands and feet started to swell. Changed needle to other arm, still swelling more. Sent me home at about 3pm, could harldy walk the balls of my feet were so swollen. Called dr, she said to put heat on hands and feet, if it was still bad in the morning to call her or my family dr. Didn't take near enough to read and next time I will bring a sack lunch.
    Yesturday was at my orthopedic dr for yearly check up on my knee and hip replacements, my family dr is right across the hall from him, so dropped in to see what he thought about the swelling, he said it is normal. (the girls at the hospital said they had never seen it happen before). He said the neph told him I needed 2 sessions 2 weeks apart? She only made me one appointment so I quess I will need to check it out.
    Also got all the blood work yesturday for the iron evaluation.

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  • alonda
    replied
    Re: Newbie and Needing Support

    He watched a friend go through dialysis, good 1 day sick/weak the next. I'v told him they have improved a great deal in the last 10 yrs. That he should go to a center and watch & talk. He lost the other kidney, bladder, part of stomach,17 yrs ago to cancer. He has a elavated acid level in his system. Its hard because im in south georgia- hes in chicago, so info is all by phone

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  • chefnancy
    replied
    Re: Newbie and Needing Support

    It could take him quite a while to decline or it could be pretty fast. He has not yet entered Stage 5, so the countdown has not even begun yet. Once he enters Stage 5, 15% function or less, then he will begin to get progressively sicker and will eventually die. Why is he refusing dialysis? Dialysis is not painful and could give him a greatly prolonged life.

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  • flipw
    replied
    Re: Newbie and Needing Support

    With proper diet he could last a long time. Remember, a person with one kidney only has 50% if there's nothing wrong.

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  • alonda
    replied
    Re: Newbie and Needing Support

    My brother just informed me that in 1 month he has went from just shy of 20% to 18% in a month. He only has 1 kidney, has all the things of stage 4, he has refused dialysis, and not a canidate for transplant, in someones informed opinon how long does he have? He says that he is going to refuse all ''new meds''. I checked out the kidney school and was greatly informed. Thank you

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  • eaglewoman
    replied
    Re: Newbie and Needing Support

    thanks Chef nancy for the info. since i don't hve a clue to anything thats going on.
    I didn't realize that the kidneys could come that far back up, my goal was to
    maintain it at 26%. so am pretty pleased.

    As for the dye during a scan my Neph told me anytime they do something like that to be sure and tell them you are a kidney patient and there is soemthing different they can use, and to clear everything with her first. Good luck.

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  • iro delaney
    replied
    Re: Newbie and Needing Support

    I am diagnosed with stage 3 kidney disease and I am having a ct scan with dye....is it safe to have dye at this stage of my disease and has anyone done that too??? any permanent change in creatinin levels?? please help

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  • chefnancy
    replied
    Re: Newbie and Needing Support

    I am surprised that the iron infusion will take that long. I get mine during dialysis, so I guess I don't have a good concept of how long it takes if you are just doing that. If your iron levels are low, you should start to feel better within a few days after the infusion. They really do help.

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  • eaglewoman
    replied
    Re: Newbie and Needing Support

    I got to talk to the Neph assistant today.
    Said the dr was real pleased with my results, except for the iron,
    they have me scheduled Mon at 8am for the iron infusion, she said
    it would take 4 hours, (guess i better take a good book) but wouldn't need anyone to drive me home. Then have to see my family dr. for an iron evaluation.
    Nice day in Colo. but have some weather coming in on Mon.

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  • eaglewoman
    replied
    Re: Newbie and Needing Support

    Thanks for the info. The girl I talk to today didn't give me a lot of extra info
    just that I had to go to the hospital for iron infusion.
    Hope to get to talk to the Neph tommorow or at least her nurse so
    I can ask a lot of questions.

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  • chefnancy
    replied
    Re: Newbie and Needing Support

    Eaglewoman, those are great results! You are in a good position to prolong your time before dialysis by following the renal diet and taking any medications as prescribed. It could be years before you have to do anything more. Just keep your nephrologist appointments and keep following your diet. The iron infusion is probably because you are anemic. It is a short IV infusion of iron that is better absorbed than iron taken orally. It is not painful and only takes about a half hour.

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