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Thread: Wegeners and Kidneys

  1. #11
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    Default Re: Wegeners and Kidneys

    Quote Originally Posted by little jerry View Post
    The beginning of Wegeners is the toughest time of all. When it is stable you can carry on in your new normal. Then you will be able to start exercise and you will have to set new goals to reach. Be patent with other people. I make a 3x5 card or a scrap of paper all the questions I want to ask, and all the new complaints I have, or I will forget them all.
    Yes, I will do that. Thank you for the advice about being patient. I have been walking with my husband, but we just started this week. And I'm so tired when we get back (half a mile each time, twice a day) I sleep for two hours. I am coughing, can't breathe at night the sinuses are so swollen. I have five different docs and the appointments are far apart! But I will start working on letters to mail on Monday! Thank you again.

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  3. #12
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    Default Re: Wegeners and Kidneys

    Hi
    I havekidney involvement since 2006 lately my lab albumin/creatinine ratio becomehigher and also the protein
    Havesomeone get something like that my nephrologist said that my kidney are tired

  4. #13
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    Default Re: Wegeners and Kidneys

    Quote Originally Posted by gmyi View Post
    Hi

    I havekidney involvement since 2006 lately my lab albumin/creatinine ratio becomehigher and also the protein

    Havesomeone get something like that my nephrologist said that my kidney are tired
    Hi Moshe,
    how much is your creatinine now ? Do you have protein in your urine ? Do you have other WG symptoms ? How are your labs ?
    As we both know too well, docs in Israel are ignorant about wg. So you have to be your own best dr. Its a stupid thing to say by your nephrologist (pardon me, shame on him). Do you have a decent dr. ?
    I think that @jvilner is treated at Sheba. Check with her if her docs are decent.
    Last edited by Alysia; 12-25-2017 at 04:42 AM.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  5. #14
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    Default Re: Wegeners and Kidneys

    Quote Originally Posted by Alysia View Post
    Hi Moshe,
    how much is your creatinine now ? Do you have protein in your urine ? Do you have other WG symptoms ? How are your labs ?
    As we both know too well, docs in Israel are ignorant about wg. So you have to be your own best dr. Its a stupid thing to say by your nephrologist (pardon me, shame on him). Do you have a decent dr. ?
    I think that @jvilner is treated at Sheba. Check with her if her docs are decent.

    hi
    my creatinine is 2.1 and the proteine is 50 i dont agree that dc.in Israel are ignorant about WG and my nephro. treats me since I was diagnosed

  6. #15
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    Default Re: Wegeners and Kidneys

    Please don't ignore these signs of depression!! It is really part of realizing that your life is changed and you are still dealing with that. There is NO SHAME!! Taking care of your depression will help you with all that wegeners comes with. I hope you are doing well. Blessings. Lilly
    Life is a Gift~ Lilly

  7. #16
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    Default Re: Wegeners and Kidneys

    Quote Originally Posted by gmyi View Post
    hi
    my creatinine is 2.1 and the proteine is 50 i dont agree that dc.in Israel are ignorant about WG and my nephro. treats me since I was diagnosed
    I am glad for you that your experience with docs is better then mine. 2.1 creatinine is above the normal. Was it allways like that ? Is it new ? Are you on wg meds ? What treatment is your nephrologist suggesting ?
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  8. #17
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    Default Re: Wegeners and Kidneys

    hi
    i am in same level in creatinine since 2007 and i am i very little medication for blood pressure and cholesterol i am not in wg medication since 2007

  9. #18
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    Default Re: Wegeners and Kidneys

    Quote Originally Posted by gmyi View Post
    hi
    i am in same level in creatinine since 2007 and i am i very little medication for blood pressure and cholesterol i am not in wg medication since 2007
    Since your creatinine is the same all those years (although higher then the normal) I guess it is not too bad. Sounds like you are in remmision. Are you ? What does your nephrologist say about your wg ?
    It is wonderful that you are already 10 years without wg meds. Praise the Lord.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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  11. #19
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    Default Re: Wegeners and Kidneys

    Hi there,
    Hope you are feeling better. Yes , this is very common. I have lung and kidney involvement. diagnosed about 25 yrs ago. Just trying to recover now from a flare. I was hospitalized for about a week. I had rituxan about 18mos ago. but had to stop because I had the JVC virus antibody which could have been fatal if the virus was to come alive. Very scary. Rituxan is a good drug just wish I could of stayed on it. Now I'm going to start cytoxin infusions. Hope we all get into remission. Feel better soon.

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  13. #20
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    Default Re: Wegeners and Kidneys

    Hi
    yes i am in remission since 2007 i wish you all to be in remission pronto

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