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
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!!