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Thread: Kidney involvement

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    Default Kidney involvement

    I would like to know those who have had kidney involvement how did you realize it in the beginning? And what do you check for now?

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    My mom has kidney involvement which they found when her hemoglobin was 5.6.
    To test for active vasculitis on the kidneys, you use a Hemostix or a urine dip stick that can tell you if there is blood in the urine.
    The other test is a biopsy to see what form of attack is happening to the kidneys.
    If you don't know how to tell if you have lower kidney function, it will show up on a CMP (Comprehensive Metabolic Panel).
    The creatinine will be high and the eGFR correlates always with the creatinine level.
    A urinalysis can tell you if you have blood and/or protein in the urine and if there are any rbc casts.

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    Thank you. Only a uranalysis was done as a normal routine check and all of the above you wrote are positive. Monday we have the appointment with her rhemy. I just have the bad habit of getting the labs myself , now im freaking out the whole weekend. Im sure there will be more test. Im already planning to take my daughter to a nephrologist after those labs today

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    Quote Originally Posted by maria garcia View Post
    Thank you. Only a uranalysis was done as a normal routine check and all of the above you wrote are positive. Monday we have the appointment with her rhemy. I just have the bad habit of getting the labs myself , now im freaking out the whole weekend. Im sure there will be more test. Im already planning to take my daughter to a nephrologist after those labs today
    Keep us posted on how things go and don't wait on anything.
    The quicker you treat the disease, the quicker the kidney function can come back.

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    I had blood in my urine from routine urinalysis and Wegs was confirmed later by kidney biopsy. Declining kidney function was monitored by regular on going lab work. I use dip sticks to check urine between regular monthly labs as Specks recommended. My nephrologist has also altered my blood pressure meds and ran extra tests to assess kidney function which has been stable for past couple years.
    Knowledge is power! Wisdom is using it to make good decisions!

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    I had no symptoms whatsoever. When admitted to hospital with all my other symptoms blood and protein was found in my urine. A blood test for kidney function found my kidneys were only functioning at around 40%. A kidney biopsy confirmed Wg and so I got my diagnosis and the cause of all my other symptoms, sinus, hearing , painful swollen joints. daily spikes in temperature etc

    With treatment my kidney function improved to at its best 60GFR but averages around 58. There has been no protein in my urine since my initial treatment. I do monitor it myself with strips that I have at home. I have blood tests every 2 months but I do know that kidney function can deteriorate very quickly with few symptoms so doing the twice weekly test at home reassures me all is well.

    Rose

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    It is unlikely to have any symptoms until severe damage has done. By severe I would estimate that you would'nt feel symptoms until kidneys were less than 20% efficient. Having said that my nephrologist has said that people are effected differently. He has patients who have almost no kidney function who work full time and don't "feel" anything is wrong and others who have fairly good function who struggle with walking a few feet. Obviously once you start adding on more illnesses such as WG, chances are it will have a cumulative effect and even slight deterioration in kidney function can have a large increase in weakness, tiredness, etc.
    Other symptoms include itching, breathlessness, loss of appetite with nausea and vomiting and fluid retention.

    I always suffer from tiredness, weakness and breathlessness.
    Fluid retention has gotten bad this last year, so was put on diuretics. I've since had to stop the diuretics (3 days ago) as my renal function has deteriorated too much.
    I don't think I've had any itching beyond whats "normal"

    My wife says "I know you're REALLY ill when you stop eating" Although this is said half in joke, it is very true. The last thing that stops with me is my appetite. My current kidney function is as low as it's ever been since I stopped dialysis about 19 years ago. But I'm still managing to eat more than I should. I think the prednisolone might have something to do with that though.
    Diagnosed April 1995

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    I had many symptoms over a two year period which seemed unrelated. One was just not feeling good, no appetite, tired all the time. Having had water retention issues in the past and frequent urination at night my Dr checked for blood in the urine and found blood. He then did a 24 hour urine test and found I only had 25% function. I was sent to a kidney Dr who did a biopsy and found I had WG. This explained the crazy symptoms I had over the two year period before diagnosis. Right about the same time my rhuemy had done a whole bunch of blood work and I was C-ANCA positive. He is the one who actually made the diagnosis just a few days before the kidney biopsy confirmed it.

    I am doing my second round of rituxan now. One more treatment to go next Monday. I really don't feel much better - still tired, short of breath, don't feel like doing anything. Appetite is OK. Dr. is reducing the pred and I am getting worried that WG is still active.

    I would like to monitor for blood in my urine in between blood tests. Do I have to have an Px to get the strips or can I buy them over the counter. What exactly do I ask for?
    Karen; dx'ed April 2014

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    Quote Originally Posted by kaysee View Post
    I had many symptoms over a two year period which seemed unrelated. One was just not feeling good, no appetite, tired all the time. Having had water retention issues in the past and frequent urination at night my Dr checked for blood in the urine and found blood. He then did a 24 hour urine test and found I only had 25% function. I was sent to a kidney Dr who did a biopsy and found I had WG. This explained the crazy symptoms I had over the two year period before diagnosis. Right about the same time my rhuemy had done a whole bunch of blood work and I was C-ANCA positive. He is the one who actually made the diagnosis just a few days before the kidney biopsy confirmed it.

    I am doing my second round of rituxan now. One more treatment to go next Monday. I really don't feel much better - still tired, short of breath, don't feel like doing anything. Appetite is OK. Dr. is reducing the pred and I am getting worried that WG is still active.

    I would like to monitor for blood in my urine in between blood tests. Do I have to have an Px to get the strips or can I buy them over the counter. What exactly do I ask for?
    Hi Karen,
    I buy these because they test both blood and protein in the urine and you don't need a prescription.

    Urinalysis Reagent Strips 10

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    Thanks Blake, I will get some of these strips to check in between blood tests. It will help ease my mind a little to know I can check to see if I do or do not have blood in the urine.
    Karen; dx'ed April 2014

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