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Thread: Anyone have the same lung problem?

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    Question Anyone have the same lung problem?

    I was diagnosed in 1990. I did have lung involvement from the beginning. But Cytoxan and prednisone made all tumors shrink and never had any problems after that with my lungs. Then 3 yrs ago I began having coughing, and chest pain. I had breathing treatments, ct scans, inhalers....I was diagnosed with asthma, possible pneumonia. CT Scan showed spiculated branch like objects that are not considered to be caused by wegeners, or cancer. No new tumors. So I am now on a daily inhaler. I also has a blood clot in my lung last year. Still taking blood thinners. But my energy level is so low! If I do any housework, I become hot, sweaty, nauseaus, and have to sit and wait for it to pass. I have actually been stubborn and pushed myself until I actually vomited. (sorry, that's gross) But I am wondering if its my lungs that is causing this total lack of energy. It has only gotten this bad in the last 3 years. I am losing my independence, I cannot physically go places like visit friends any distance away, unless I have my sister, parent, with me. I cant trust myself to drive safely. I do not cough up any blood or anything else scary. Just some build-up from my throat sometimes. When I lay down at night, the back of my throat gurgles and makes me cough....like fluid gets in my throat when I lay down. Only at night. But I cough daily, pretty hard, and drs can find nothing that is an issue or concern. I know that wegeners causes fatigue, and we have to use our spoons wisely....but I'm wondering why I'm getting winded and nauseaus so quickly, and I cannot even enjoy a walk on the beach or a couple hours of gardening? Anyone else having issues similar? Thanks for any advice
    Life is a Gift~ Lilly

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    Hi Lilly,

    I feel sad about your fatigue and lung issues.

    You didn't say what meds you're taking, but some do have fatigue as a side effect. When I was on mtx, it got to the point where I was pretty wiped out for 24-48 hours after taking it.

    Another thought -- have you had a pulmonary function test? Have you been checked for tracheal stenosis? It seems you're not getting enough air.

    I hope your docs can get the problem identified -- and corrected.
    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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    Ditto to everything Pete said. I wish they could figure out the cause and give you some relief so you can enjoy your summer and get back to your former improved condition.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

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    Yep you're not getting enough air which is probably why you're feeling so crap - OR it could be those objects in your lungs. Are you seeing a Pulmonologist? If so then perhaps try another one. Take all your test results/scans etc and get a second opinion. Your current one can't just tell you you've got these things in your lungs and send you on your way with an inhaler. Something has definitely changed. Needs to be chased up. Good luck and hope you get a fresh spoon delivery often
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

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    I'm wishing you all the best for finding out some answers about your lungs. I have COPD and have episodes of exhaustion, pain in lungs, nausea,dizzness, short of breath and terrible sweating. It is really hard to be real active at times. You do need to see a pulmonologist to get a pulmonary function study, that will tell them whether it is Wegs or COPD(which includes asthma). Take care of yourself!
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


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    Hi Lilly, Your symptoms remind me very much of my tracheal stenosis. Have you been scoped for this? I have very low energy and get the hot, dizzy, almost vomiting feeling if i do too much, which i think is caused by lack of oxygen. I do not have lung issues, that we know of. But also the cough, gurgling at night. It all sounds very familiar. I hope you have an ENT who could check you for this if you havnt been checked recently. Im so sorry tho, for the weariness your dealing with. Hang in there! Please keep us posted.

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    Dear Lilly,

    I am so sorry that you suffer so much. Something wrong is going on there, and it needs to be checked and treated.

    Many times docs said about things that they are not wg related when actually they are.

    My beautiful Phil had shortness of breath most of the time, he was coughing a lot and vommiting as a result. Many times it was the result of lungs infections and/ or wg flares. He also had bronchial stenosis and bronchiactesis.

    Do you have mucous from the coughing ? What color ? Did they take sputum samples ? Did they do a bronchoscopy with samples ? How are your blood tests ? Are you having other wg symptoms ?

    Hang in there. Please update us. Sending prayers and much love ❤❤❤❤
    Last edited by Alysia; 06-18-2017 at 12:07 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.

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    Hi Jaha
    Just now found this post and I can relate toLilly and your self. Jaha, a lot of what I am experiencing is what your saying. pain in lungs (I call it throbbing), nausea, dizziness, short of breath and sweating. I also see stars all around me not sure if that means not enough oxygen? But yet both Rheumy and Lung Dr. say my lungs sound fine. I also take Spirvia and Advair daily for about 10 yrs now. They say I have mild COPD, but just wondering if it has gotten worse wince the gpa? My Lung Dr. said Friday well you just had breathing test done (my yearly test) 3 months ago we can wait another 9 months to repeat it.
    Now, I want more answers from my Rheumy. Wondering if a biopsy would be the next step in helping to answer some of my questions and come to a conclusion as to why I get throbbing in my lungs


    Quote Originally Posted by Jaha View Post
    I'm wishing you all the best for finding out some answers about your lungs. I have COPD and have episodes of exhaustion, pain in lungs, nausea,dizzness, short of breath and terrible sweating. It is really hard to be real active at times. You do need to see a pulmonologist to get a pulmonary function study, that will tell them whether it is Wegs or COPD(which includes asthma). Take care of yourself!

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    Hi Lilly

    Yes, I have mild COPD for about 10 yrs now. I think this is why I am having a bit more symptoms then others. CT scan shows mild copd and some thickening of the bronchial tubes, but doctor's haven't said much to me having this with GPA. I get lots of throbbing lately on both sides of my lungs and SOB, dizzy, nausea, sweats etc.
    I think I do need a biopsy of the lungs, but not sure just how invasive this is to do.
    Hope your feeling better and got some answers
    Quote Originally Posted by Lilly View Post
    I was diagnosed in 1990. I did have lung involvement from the beginning. But Cytoxan and prednisone made all tumors shrink and never had any problems after that with my lungs. Then 3 yrs ago I began having coughing, and chest pain. I had breathing treatments, ct scans, inhalers....I was diagnosed with asthma, possible pneumonia. CT Scan showed spiculated branch like objects that are not considered to be caused by wegeners, or cancer. No new tumors. So I am now on a daily inhaler. I also has a blood clot in my lung last year. Still taking blood thinners. But my energy level is so low! If I do any housework, I become hot, sweaty, nauseaus, and have to sit and wait for it to pass. I have actually been stubborn and pushed myself until I actually vomited. (sorry, that's gross) But I am wondering if its my lungs that is causing this total lack of energy. It has only gotten this bad in the last 3 years. I am losing my independence, I cannot physically go places like visit friends any distance away, unless I have my sister, parent, with me. I cant trust myself to drive safely. I do not cough up any blood or anything else scary. Just some build-up from my throat sometimes. When I lay down at night, the back of my throat gurgles and makes me cough....like fluid gets in my throat when I lay down. Only at night. But I cough daily, pretty hard, and drs can find nothing that is an issue or concern. I know that wegeners causes fatigue, and we have to use our spoons wisely....but I'm wondering why I'm getting winded and nauseaus so quickly, and I cannot even enjoy a walk on the beach or a couple hours of gardening? Anyone else having issues similar? Thanks for any advice

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    Default Re: Anyone have the same lung problem?

    Thank you all for the response and information.....I am sorry that I did not get back to you all sooner. Each one of you answered questions that were very helpful! And one problem for me, is that I was diagnosed in Mobile, Al. and treated by my team of doctors at that time for 10 years, because my husband got a job in middle Alabama, 4 hours north. So I had to transition to a whole new set of doctors. Lucky for me, I was very close to the University Of Birmingham, UAB. A top college and Medical Center on the cutting edge of many studies, and procedures and amazing doctors. In those 10 years, I had a lot of doctors interested in me, and had many studies of my lungs, and kidneys, and sinus and nose reconstructive surgery for saddlenose. One thing I did was see an Otorlaringologist. As I look back at my records, I saw him often, trying to stop smoking, and having bronchoscopys, and other procedures to study my lungs. I also had a webbing removed from my throat that formed and cut my breathing down to a hole the size of a straw! But at that time, I never had issues breathing from lung problems. I did not smoke very much, but the little I did smoke was stupid of me. Anyway, I battled wegeners in the 10 years I lived there, and then my husband and I divorced. By this time, I am suffering from needing a total knee replacement, and going through a divorce and trying to keep doctors in Birmingham while living in Mobile with my parents. I had my total knee in 2010. It went very well. I found doctors in Mobile who are amazing, and have been treating me since 2010. I have all specialists, an EENT, Eye specialist, Pulmonary Cardiologist, Rheumatologist, and a PA. My breathing issues began when I stopped smoking. I was not a daily smoker, but I would smoke if others were around. I was a Bum Smoker!! But when I stopped I began having issues. So I began seeing the lung doctor. At first, it was just a lot of coughing, and he kept up with a CT scan a year to have a running record of my lungs. I had infections, and even got MRSA that I had treated by 2 very strong meds that I did myself through a PICC line. That lasted a month, and since then things just keep changing. I have had testing 2 or 3 times for seeing how much oxygen I am getting when I breath, and have had all the tests that you all mentioned. But each time the tests came back lower than normal limits, but not bad enough to be worried. My ct scans show some issues that are in my lungs, but are most likely damage from a little bit of everything. The results don't look like anything from wegeners, nor do the look like any sort of cancer. They have remained unchanged for the last 3 years. Last year is when I really started having issues breathing. I was treated for asthma, took breathing treatments at the dr office, at home, etc. Everything loosened up and I coughed up, but still I was SOB. Then last year I got a DVT in my left leg from having a broken foot and being sedentary. After dealing with that, 2 weeks later I became so SOB that my lung dr sent me to the ER, and I had a blood clot in my lung. Problem is, there is no way to tell if it was from my DVT, or if it was wegeners related. So, as of now, my blood clots are gone, I am taking blood thinners, (elequis) and I take Spiriva daily. So I seem to get lung infections very easily....and I feel like eventually, whatever is going on in my lungs will be resolved, but while I wait, I am having the issues like yall. I have learned to adjust myself and the way I do things so that I only push myself as far as I can. My EENT does not see any throat issues that could be causing my SOB. I see him every month or two, and he helps me clean out the back of my sinus cavity that gets built up, but I cant do anything about. He puts tubes in my ears, takes them out, etc....So, at this time I am just taking it daily. I know that I will probably get another breathing test if needed, to see if my lung capacity has changed. I just get so aggravated of the limitations that my lungs put on me!!!! I cant believe how much I write. This is ridiculous!! I'm a talker too, so my Daddy has always said that if he put tape over my mouth, the top of my head would blow off!! That's how much I talk! I just explain every detail, that is my problem. Anyway, If you did just read the "book" I just wrote here, thank you for your time! I will be in touch, and I do hope you all are doing well....we are warriors!!
    Life is a Gift~ Lilly

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