Lung Involvement?

[debhaz22]

When people talk about having lung involvement with WG, what symptoms do they mean?
Thanks!

[drz]

When people talk about having lung involvement with WG, what symptoms do they mean?
Thanks!

In serious cases it means great trouble breathing, bleeding in the lungs and coughing up lots of red blood, and scar tissue after it heals. Many have granulomas or things that look like ground glass on x-rays of lungs. There may be raspy or crackling sound when they listen to your lungs. Many of us lost a great deal of lung function so tests of lung capacity will show a 50% or significant reduction in lung capacity. We are often misdiagnosed and treated for pneumonia in early stages of Wegs since it might look similar to an inexperienced doctor.

[annekat]

I think it might be different for different people. And more severe for some than others. For me, I already had a lot of sinus and hearing issues but did not yet know I had Wegs. I started having what felt like asthma, and since I'd had asthma before, I attributed it to allergies. But things got worse and I was starting to cough a lot more that usual. I'd never had a lot of coughing with asthma, though some people do. Pretty soon I was coughing up phlegm, like having bronchitis, and then blood started appearing in the phlegm. Sometimes the phlegm didn't have much color to it except for the red or pink from blood. I started having a lot of pain with the coughing, and a "pleural rub", sort of a crunchy sensation in the lining of the lungs when coughing or breathing deeply. Some people cough up a lot of blood, as in hemorrhaging from the lungs, but I don't think mine was to that extent. i was having some fever, and my conclusion was that I had pneumonia, which I had never had before, and I went to the pulmonologist who had treated me for asthma in the past. I got a chest xray which didn't show a whole lot, and he prescribed some antibiotics and pred. But on second glance, he noticed something a bit questionable that the radiologist had missed. He put me in the hospital overnight for some tests, including a CT scan, which showed numerous "cavitary lesions", apparently taking the form of small cavities throughout the lung tissue. Others on here have had nodules, which wasn't mentioned in my case. Anyway, the internist overseeing me in the hospital guessed that it could be Wegeners. This was confirmed by a nasal biopsy in my ENT's office a few days later.

I also had night sweats, transitory joint pain, watery eyes, tightness around the eyes, appetite loss, extreme fatigue.... all classic Wegs symptoms, but which would happen with or without the lung involvement. If you haven't had lung involvement, I hope you don't get it! Even more, I hope you don't get kidney involvement, as I haven't. There can also be brain and heart involvement, but these are more rare. Best wishes to you for a speedy remission!

[Debbie C]

I wonder what the systems would be for heart and brain involvement. Does anyone on here have that? I found out by accident (literally ) my boyfriend and I were coming back from a health food store ( of all places ) and got rear ended. We went to the hosp just for a check up and they did a scan on my lungs and the nurse came in and said they found something and they were thinking cancer. I had 4 or 5 nodules in my lungs. My pcp told them to send me home and set me up to see a pulmy. which after a couple of needle biopies he couldn't get enough to tell what it was...so I had to have a right partial middle lobectomy done to dx. wg. Before that I felt fine,I would be short of breath sometimes but never anything like Anne had with the coughing up blood (Thank God....I would freak if that starts happening ) But I have been getting really strange feelings in my head and chest lately that it just makes be wonder.I haven't heard anyone on here talking about that so I wonder what the systems would be.

[Dirty Don]

getting really strange feelings in my head and chest lately

If they are simulatneous, that's usually a sign of lack of oxygen retention. Had a PFT lately?

[Dirty Don]

When people talk about having lung involvement with WG, what symptoms do they mean?
Thanks!

For me: coughing up blood, a bit of trouble breathing, major lethargy, loss of oxygen retention (less than 50% on dx), 'fractured glass' xrays of lungs, one nodule...hmmmm...thinking. Anyways, it all cleared up, and as far as the generalists who were attending me at first were concerned, they have no idea why...I was lucky...but I couldn't get out of bed to get to Vegas!!

[annekat]

Debra, there have been a few people on here with brain involvement and one I remember with heart involvement. Unfortunately, I never saw much from them.... some of them passed away, but I don't know that that means they aren't recoverable from. I know there are others on here longer than I've been who'd remember some of these cases better or know of more of them. I have a feeling the symptoms would be harder to pinpoint until things got pretty bad. Maybe you could find some threads on this through a search.

I didn't cough up very much blood at all compared to some people I've heard of. Truly hemorrhaging from the lungs would scare the crap out of me, too. I'll take what I had over getting a lumpectomy like you did. I'm glad my Wegs was able to be dx'ed by nasal biopsy, which was, for me, a pretty easy in-office procedure, if a little uncomfortable.

[whatthewhat]

For me: coughing up blood, a bit of trouble breathing, major lethargy, loss of oxygen retention (less than 50% on dx), 'fractured glass' xrays of lungs, one nodule...hmmmm...thinking. Anyways, it all cleared up, and as far as the generalists who were attending me at first were concerned, they have no idea why...I was lucky...but I couldn't get out of bed to get to Vegas!!
That ending sentence made me laugh. Thanks for starting my day with a smile. :-)

[debhaz22]

Hi Debra. What kind of "strange feelings" are you having in your head and chest?

[Debbie C]

Hi Debra. What kind of "strange feelings" are you having in your head and chest?

It's hard to explain. Ever since I had that balance test with the ent I have constant ringing in my ears, headaches,dizzy and sharp pain on top of my head and my eyes are really blurry and I keep forgetting things. I did at sometime have an infartic stroke and 5 Tia's ( that was noticed when I had a brain scan,but they couldn't tell when that happened ) And my chest just has a strange feeling I can't explain. Tomorrow I go see an optomologist,Tuesday-a nuerologist,Wed.-my ent. and if nothing is better my then I am going to call my reumy at CC and maybe go to the er.It is just an all day thing and not getting any better. I hope they don't up my pred.,I've just lost 6 lbs. and I don't want to gain it all back.:sad:

[debhaz22]

Oh my, I'm so sorry you're feeling so lousy! Must be scary. Please let me know what they say, I hope they can give you an answer. Will be wishing you good news...!

[Debbie C]

If they are simulatneous, that's usually a sign of lack of oxygen retention. Had a PFT lately?

Is that the breathing test where they put you in a tube ? If not I don't know what a PFT is. My boyfriend is gonna take me up to get the results of my bloodwork from Fri.

[Dirty Don]

Yup, PFT (pulmonary functions test) is the one where you sit and blow/breathe as hard as you can thru some tubed apparatus whilst sitting in a glass box! Yikes! Not fun, but I blow the tests off the charts...go figure! She asks why I'm never assigned to the entire test any more and I told her...she saw...I'm at 110% of the testing! Yikes! Damn blowhard!! LOLOLOL! I am toooooo funny! What! COFFEEEEEEEEEEEEEEE!!!!!!