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Thread: Feeling very bad

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    Default Feeling very bad

    I am having a heck of a time breathing... I had a chest xray a week ago today and they didn't see anything... but my breathing was not as bad as it is today and each day it seems to get a bit worse. I was shopping and while just walking in the store I became so very weak and so short of breath and sweaty I had to stop and couldn't finish my shopping thank goodness my husband was with me. I am coughing my head off also and it isn't a cold kind of cough at all more of a very dry cough. The doctor gave me an inhaler the other day when I was into see him. It helps some but not that much. He told me I had the flu/the crap that is going around. I tried to tell him just how bad I was feeling and let him know it was not the flu... I don't know how to get through to the doctors. The fatigue is so darn bad. I feel just like I did about 10 years ago and at that time I ended up in the hospital and about died... and they didn't know what was wrong then. They told me that my lungs were filled with what looked like white fluffy stuff.... the pulmonologist said he had never seen a set of lungs like that before and he didn't know what it was. Later he just went and dx'ed it as pneumonia. The bad thing is I live in a very small town and maybe the doctors here don't see the rare diseases as much as those doctors in the big cities.
    I was wondering if maybe my blood work showed something that time when I was in the hospital that would make the doctors understand how bad I feel now. Because my blood is slow to tell them how bad I feel until I get really sick. Maybe I could get those results from like 10 years ago... I was told that my blood test were not good back then and that was why my doctor put me in the hospital. I know they did a lot of blood tests back then. Just wondering if they keep paper work that long on file. I just wish I would of ask for some of the reports back then but I didn't know this illness would hit again.

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    Do you get regular bloodwork? If so maybe the drs can take new blood and compare to your recent tests? The shortness of breath sounds worrisome... Do you have a rheumatologist or other specialist you can see.?
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

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    If I over do my walking or activities, I have the same problem breathing wise. When I had the flu it was extremely worse.it's normal for me and they just gave me an inhaler also. They are requesting a sleep apnea test. They said that might have something to do with it. Will see. Just have them keep up with your blood test. C.J.

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    If you live in the central US, you may want to get tested for the enterovirus (sic) that is going around. Its symptoms are similar to yours.
    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

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    Blood clots are sometimes associated with wegs. Chest xrays & regular CT scans won't show a pulmonary embolism. A blood test called a D dimer can help but isn't 100% accurate. A CT scan with contrast dye is normally the test used. Folks with kidney problems can't use dyes so a V/Q lung scan is done for them. You sound really uncomfortable, maybe you could at least have the blood test to start? Hope this helps.

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    Quote Originally Posted by JeanMarie View Post
    Blood clots are sometimes associated with wegs. Chest xrays & regular CT scans won't show a pulmonary embolism. A blood test called a D dimer can help but isn't 100% accurate. A CT scan with contrast dye is normally the test used. Folks with kidney problems can't use dyes so a V/Q lung scan is done for them. You sound really uncomfortable, maybe you could at least have the blood test to start? Hope this helps.
    After a short stay in hospital early this year during my latest Wegener's relapse I ended up with blood clots the full length of my leg and right up to my abdomen.
    Since then I've had a chest CT scan (no dye due to kidney failure). As there was no dye the pictures weren't 100% clear, but they were 90% sure I had numerous blood clots (pulmonary embolisms) in my lungs. If it's not Pulmonary embolism it could be Wegener's related. I have been waiting for 3 months and still no date for another CT scan (NHS is SO slow). In the UK kidney failure patients can get around the contrast dye situation in the following way - You have IV fluids for about 6 hours, have the scan, then back on IV fluids for a few more hours. I went through this routine when I had a seizure (which I only ever get when I'm having a Wegener's flare) and needed an MRI with contrast brain scan. I was allowed home the same evening. I have been told that after the chest CT with dye I would need to spend the night in hospital. I don't know why the chest one requires me to have an over night stay, although it is a different hospital, so maybe just different procedure at that one.

    I was wondering if you could tell me what a V/Q lung scan is? Maybe I could request it when I EVENTUALLY get my appointment, if it's more preferable to using dye.
    Diagnosed April 1995

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    Gilders, This is from a Mayo Clinic site:
    V/Q lung scan

    This test uses small amounts of radioactive material to study airflow (ventilation) and blood flow (perfusion) in your lungs. For the first part of the test, you inhale a small amount of radioactive material while a camera that's able to detect radioactive substances takes pictures of the movement of air in your lungs. Then a small amount of radioactive material is injected into a vein in your arm, and pictures are taken as the blood flows into the blood vessels of your lungs. Comparing the results of the two studies helps provide a diagnosis.

    I think the V/Q is an older test (not sure) & the CT with contrast is preferred. (Not sure of that either) I think there are drugs to protect the kidneys if given before the test as well. I had the V/Q because I was in the emergency room & that was quicker. I was nervous about the radiation but the technician told me she had worked in that department until she was nine months pregnant. She said "Believe me, I would never have been here if there was any danger" I always remember that-it was a comfort to me.

    Hope this helps!

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    Hi Gilders,
    My mom just had a V/Q and it doesn't really show much when compared to the HRCT scan.
    I asked if it can show nodules and they said no.
    It just shows lung difusion abnormalities which can also mean clots, nodules or tumors.
    There is a lady who did a video for the vasculitis foundation that had many nodules in her lungs and was diagnosed with bilateral lung cancer until they did a lung biopsy.
    They found that all those nodules were blood clots.
    I wonder if all the nodules in vasculitis folks lungs are nothing more than blood clots.
    Last edited by mrtmeo; 10-01-2014 at 12:39 AM. Reason: added info

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    I had similar breathing issues and it turned out to be the scaring of the bronchial airway.. maybe you might have a bit of that too.. Go to a bigger city and hospital that knows WG. I travel at least 2 hours one way to see someone but most of the time it is 3 1/2 hours to Pittsburgh. I live in central WV and I am trying to get into the Cleveland Clinic which is 4 hours away. It stinks to travel that far but if they know what they are doing then it is worth it. Good luck and keep us posted. Praying for you.

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    How are things now carrot top?
    - You can judge the character of a person by how they treat those who can do nothing for them.

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