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Thread: Past lab results - important?

  1. #11
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    Quote Originally Posted by drz View Post
    I had serious lung involvement and asked my expert at Mayo what warning signs I should be aware of. They are same indicators that preceded my first diagnosis, trouble breathing, fever, pain in chest, and coughing up fresh blood. The last indicator usually means thngs are already pretty serious. Mayo also does a chest X-ray at every check up to assess any changes in the lungs. X-Rays are often done when there is extensive lung involvement and I had dozens of them when in the hospital.
    The dip stick is best way to check for kidney involvement along with monthly labs.
    Hi drz,
    What I should have said about the lung testing is that there really isn't any at-home test for the lung function that I am aware of.
    Maybe a spirometer could help, but not sure.

  2. #12
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    As a former Respiratory Therapist I concur with mrtmeo, a simple plastic incentive spirometer is a very valuable tool. Not only does it roughly measure lung volume, it strengthens our breathing muscles and, more importantly, opens the little air sacs where oxygen reaches the bloodstream. This can also be achieved by simply taking a set of SLOW, deep breaths and holding the volume to a count of 3-5. Take your time as not to hyperventilate. Commit to doing 5 every hour or 2-3 every tv commercial break. This also helps to keep pneumonia to a minimum as those air sacs (alveoli), when not inflated regularly, are an excellent warm, moist breeding ground for 'bugs.'

  3. #13
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    Quote Originally Posted by whatthewhat View Post
    Had The Worst rheumy visit today...first time at the new clinic (had to switch docs since diagnosing docs bungled my daughter's kidneys going bad this past fall.) One whatthewhat moment was when new doc said she doesn't need to see old labs - won't request medical files sent over...does this make sense to anyone?? I thought it was good to look for patterns? Dumbfounded. There was a lot else that went down, and we will not be going back to this clinic for this child, but still I'm curious as to your reactions. Thanks.
    I agree with you. That's why we need to do the extra work.

  4. #14
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    I have monthly labs done, primarily for my own peace of mind. I compile them into a spreadsheet so I can more easily identify trends. I take a copy of the spreadsheet with me when I visit my PCP and wegs docs. For the most part, my labs are within normal limits. However, my creatinine consistently is just above normal. I have no outward symptoms. I apparently have some kidney damage, but not enough to be overly concerned.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  5. #15
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    Quote Originally Posted by whatthewhat View Post
    Also the doc said she basically just keeps an eye "on the main organ systems, ANCA a and PR3 can't tell us anything, really."
    Wow. Just, wow. Trust me, I made sure my rheumy was testing my PR3 every month during my labs. I've had my ANCA panel run probably 5 times, and only once did the cANCA show positive. However, every single time my PR3 has been abnormally high, which means my Wegs is still active and something inside my body isn't very happy. Even though I've fired my current rheumy in the last few weeks, she had even said that she realized the Cytoxan hadn't been working that great on my Wegs because my PR3 was always testing so high.

    Now, tell me how a doctor would believe that not looking at the PR3 in a Wegs patient would be a smart thing to do? Without some of these more specific lab values, how will the doc ever SEE what is going on inside the body as far as Wegs flares are concerned? Sure, you always have symptoms, but lab tests help back these symptoms up and give them some idea where to look to find out which organ system is ticked off. The way you're describing this doctor, she wouldn't pay attention to your symptoms, either. NEXT!
    Teri from Texas
    Diagnosed w/WG March 2015
    "Lord my God, I called to you for help, and you healed me." - Psalm 30:2

  6. #16
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    I was tested a few times for Anca,when first being dxed but twice came up neg and once pos. My dr at CC never checks my PR3 unless it is under something else ??? I have my bloodwork done every month also and I always get a copy and if she ever thinks there is a problem she will call. Just was I had to have it redone but it came back fine. I know anca isn't a good sign for wg but is the PR3 that important,if so I would think she would have that checked monthly also
    Life isn't about how you survive the storm, but how to dance in the rain !

  7. #17
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    Deb, hi. I'm curious and waiting for others here as my doc knows nothing about it. I tried to get her to do this test, but failed. I even called after the draw to have it added. Nope...I've looked this up, but my head starts to spin. So looking to the ones who know best! Right here..... Deb.

  8. #18
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    I had to go back to my first visit to CC in 2012. Dr Villa Forte ordered both c-ANCA and p-ANCA. c-ANCA came back positive (87). p-ANCA came back negative (3). Normal for both tests is 0-20. Haven't had one since. I think I'll put this on my list of questions for my visit to CC in April-May.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  9. #19
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    The hospital where I have my labs done has a neat portal that allows me to view all past labs in a chart or graph format. My routine labs are CBC, CMP, ESR and CRP. I think ANCA/PR3 has only been checked once since diagnosis. Apparently the rheumatologist does not think it is meaningful during maintenance treatment?

    Pete, incidentally, yesterday I posted a PDF of a paper co-written by Dr. Villa Forte and Dr. Hoffman, also from CC.

  10. #20
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    Quote Originally Posted by Pete View Post
    I think I'll put this on my list of questions for my visit to CC in April-May.
    Pete,I am going I think in April,haven't made appt. yet. Maybe we'll see each other !! I will try to remember to ask Dr. Langford also.
    Life isn't about how you survive the storm, but how to dance in the rain !

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