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Lung & Respiratory Disorders / COPD Message Board


Lung & Respiratory Disorders / COPD Board Index


I have posted on this board before, but it's been many months. I had shortness of breath all the time. So I've been the rounds of tests, etc. with a really crummy pulmo. Kept saying it was asthmatic lungs, but had no explanation for SOB all the time and NO asthma attacks. Didn't add up. Also have hyperinflated lungs. I've even been taking allergy shots from an allergist. Trying to cover all the bases. No relief.

I FINALLY went to another pulmo who is great. Immediately ordered high resolution CT scan. We were worried because hyperinflated lungs are often caused by emphysema. Ct scan doesn't show any emphysematic changes, but shows a little scar tissue.

I didn't have time to ask the doc on the phone, but now I'm wondering what could cause scar tissue? I've never smoked. It also said there was some sort of linear something in the middle nodule(? middle something), but he said he didn't think that would cause this SOB. Didn't seem overly concerned about that comment.

I am allergic to aspirin and have asked two previous pulmos and asthma doc if taking Celebrex could cause this. Everybody said no. This is the first guy who thought that was a great clue. There is something called Samter's syndrome which is people who are asthmatic, aspirin-sensitive, and have nose polyps. He looked in my nose and sure enough, polyps! So I'm not taking Celebrex anymore and seeing if that helps. If no help, in three weeks, he's doing a bronchoscopy where they look in your lungs with a camera.

Have any of you had anything similar to this? And any clue about lung scarring? I did have bronchitis a lot as a teenager.
[QUOTE=plm]I have posted on this board before, but it's been many months. I had shortness of breath all the time. So I've been the rounds of tests, etc. with a really crummy pulmo. Kept saying it was asthmatic lungs, but had no explanation for SOB all the time and NO asthma attacks. Didn't add up. Also have hyperinflated lungs. I've even been taking allergy shots from an allergist. Trying to cover all the bases. No relief.

I FINALLY went to another pulmo who is great. Immediately ordered high resolution CT scan. We were worried because hyperinflated lungs are often caused by emphysema. Ct scan doesn't show any emphysematic changes, but shows a little scar tissue.

I didn't have time to ask the doc on the phone, but now I'm wondering what could cause scar tissue? I've never smoked. It also said there was some sort of linear something in the middle nodule(? middle something), but he said he didn't think that would cause this SOB. Didn't seem overly concerned about that comment.

I am allergic to aspirin and have asked two previous pulmos and asthma doc if taking Celebrex could cause this. Everybody said no. This is the first guy who thought that was a great clue. There is something called Samter's syndrome which is people who are asthmatic, aspirin-sensitive, and have nose polyps. He looked in my nose and sure enough, polyps! So I'm not taking Celebrex anymore and seeing if that helps. If no help, in three weeks, he's doing a bronchoscopy where they look in your lungs with a camera.

Have any of you had anything similar to this? And any clue about lung scarring? I did have bronchitis a lot as a teenager.[/QUOTE]


Hi PLM,
I'm glad you're back. I'm Howitt44 and if you remember we had very similar problems - no asthma attacks, small airway function, shortness of breath. etc. Well, my last appointment was back in December. After being on Advair 100/50 for about 6 weeks, ,my tests basically showed no improvement. My small airways were the ones suffering at about 47% of normal. Well, she didn't seem overly concerned. I don't really have shortness of breath anymore as I have been exercizing, trying to lose weight. She wants me to continue on Advair, nasal sprays, Nexium for acid reflux and come back in June unless I have symptoms. My peak flow is 450 - 500 which is above average for me at 5'2" and 47 years old.
Sorry to hear your symptoms are still with you, but glad you are seeing a good specialist. I have read and heard that most lungs will show some scarring. If you have ever had bronchitis or pneumonia it might show up on an xray. I don't really think that in itself is a cause to worry. I don't know much about aspirin sensitivity except that a lot of people with asthma seem to have that. I have decided that for myself if I don't have any more symptoms than I'm having now I'm going to carry on with life. I have spent the last 3 years worrying over this - I haven't gotten worse, and the only time I really notice shortness of breath is if I dwell on it. I tend to stress over things and I think this time I have. I have been attending a Yoga class, walking, jogging on the treadmill and lifting weights. I need to lose about 75 lbs. which I have really been in denial about for awhile. I'm sure I could breath better with all that weight off, it just makes common sense. But I am glad you are back on and hope your doctor is finding all the answers you need. :angel: God Bless!
[QUOTE=hc85]Hyperinflation is a sign of emphysema, yes. I would ask for a test for alpha-1 antitrypsin deficiency, maybe just to be safe. This is an inherited type of emphysema. I have scarring on my lungs. Mine's from infection...Multiple pneumonia's will do that to ya'. I hope you guys get everything figured out. Mind me asking what your FEV1 is? Your FVC? FEF 25-75?

I don't have a problem with aspirin sensitivity, either. I know of some who do, though...[/QUOTE]
Thanks for your input. I have been tested for alpha 1 antitrypsin deficiency, and I am within normal range. Normal is 100 - 200, and I am 125. So the low end of normal. New pulmo says he might test again at some point.

My FEV1 is within normal, in fact 97% of predicted. FVC is 112% of predicted. But I guess the fev1/fvc takes into account the large lung capacity, and is 66 compared to a predicted 75. It is the numbers for small airways that are low. FEF25-75% is 46% and FEF75-85% is 30%.

My DLCO (diffusion) numbers are quite high. 8 months ago, it was 121% of predicted, now it is 136%. I didn't ask him what the significance of an increase in diffusion numbers might mean,if anything. With emphysema, these numbers are low, with asthma, they are high. This is one of the conflicting pieces of info. High diffusion rates and positive methacholine challenge indicate asthmatic lungs, but x-ray looks like someone with emphysema. He said that if he had no other data and someone just asked him to look at the x-ray, he would immediately think alpha 1 def type emphysema. He said people with smoker's emphysema have x-rays that show something at the top, and mine show whatever this is at the bottom. And people with asthma don't generally have hyperinflated lungs, except maybe in the middle of a bad attack.

And he wonders why they are MORE hyperinflated than 8 months ago. Your chest cavity is only so big and there's only so much space for the lungs. Mine have expanded as far as they can at the top and sides, and are now stretching downward farther than before. Obviously there is air trapping, but he doesn't know why.
Since everyone is on the subject of scarring of the lungs.Maybe someone can explain to me what this means........Ok had penumonie a while back in my left lung.Xray stated I had Chronic changes Bilaterally...Chronic interstitial changes.I freaked out I thought I had interstitial lung disease..So my Dr gives me a full PFT everything came back fine she said go back for another chest x ray in 3 months so I did. I guess the pneumonia left a nasty scar in my left lung and the x ray stated once again Chronic Changes Bilaterally , but atleast they didnt mention interstital changes.
My question is does CHRONIC MEAN SOMTHING OLD like my dr said or is it something thats progressing.Could it be scarring from my asthma? If anyone has any input I would really appreciate it b/c this is really eating at me.
[QUOTE=likeme28]Since everyone is on the subject of scarring of the lungs.Maybe someone can explain to me what this means........Ok had penumonie a while back in my left lung.Xray stated I had Chronic changes Bilaterally...Chronic interstitial changes.I freaked out I thought I had interstitial lung disease..So my Dr gives me a full PFT everything came back fine she said go back for another chest x ray in 3 months so I did. I guess the pneumonia left a nasty scar in my left lung and the x ray stated once again Chronic Changes Bilaterally , but atleast they didnt mention interstital changes.
My question is does CHRONIC MEAN SOMTHING OLD like my dr said or is it something thats progressing.Could it be scarring from my asthma? If anyone has any input I would really appreciate it b/c this is really eating at me.[/QUOTE]
You probably need to start a new message thread with your question. You will be more likely to get answers. Give your thread a good title so people will read it. There is also a good message forum at [url]www.copd-support.com[/url].
PLM,

At first I really didn't notice any symptoms. Those around me did. They said that I sounded as if I smoked five packs of cigarettes a day. I would notice that I would sometimes wheeze when I was doing my daily exercise routine and had even asked my doctor about it during a visit. He could not hear anything out of the ordinary. Three months after this I was starting to have a hard time breathing and at that time I could also hear what every one had been talking about as far as hearing my breathing. I went to the doc for a follow-up on something else and again mentioned the wheezing and this time he could hear it. He had me do a peak flow meter test there in the office and he said I had the lung capacity of a nine year old. They gave me a nebulizer treatment and sent me for xrays, put me on prednisone and a couple of inhalers to see if that would help. He thought it was most likely allergies or asthma. Xrays came back all clear and the medicines did not help me. This was towards the end of the year so I opted to wait until a new year as far as deductibles go to see an allergist. He listened to all of my symptoms and did the scope up the nose and down the throat and saw a webbing past my vocal cords. He then referred me to an ENT who did the same thing and also saw the narrowing. Then came two CT's, which did not show anything. Then came the bronchoscopy in which the narrowing was visible. Two weeks later I had my first laser surgery. The ENT said it had looked as if I had been kicked in the throat at some point in my life. I have some kind of shelf thing happening around my crichoid. I became too much for him to handle and he then referred me to another ENT in Denver. So, now I have had six laserings done and am going for my resection as soon as the scar tissue "looks" right.

I guess the first symptoms were wheezing or stridor. The out of breath feeling was more like a panic attack feeling to me. Then, since your body is working so hard to get air, you are completely exhausted. You cannot complete a sentence without taking a couple of breaths. It is a condition that is not diagnosed correctly in most cases. More women tend to get it than men..... why? no one seems to know. Hope this helps.... sorry it was soooooo long... It could be longer!!!

Denice :wave:
[QUOTE=ldolson]PLM,

At first I really didn't notice any symptoms. Those around me did. They said that I sounded as if I smoked five packs of cigarettes a day. I would notice that I would sometimes wheeze when I was doing my daily exercise routine and had even asked my doctor about it during a visit. He could not hear anything out of the ordinary. Three months after this I was starting to have a hard time breathing and at that time I could also hear what every one had been talking about as far as hearing my breathing. I went to the doc for a follow-up on something else and again mentioned the wheezing and this time he could hear it. He had me do a peak flow meter test there in the office and he said I had the lung capacity of a nine year old. They gave me a nebulizer treatment and sent me for xrays, put me on prednisone and a couple of inhalers to see if that would help. He thought it was most likely allergies or asthma. Xrays came back all clear and the medicines did not help me. This was towards the end of the year so I opted to wait until a new year as far as deductibles go to see an allergist. He listened to all of my symptoms and did the scope up the nose and down the throat and saw a webbing past my vocal cords. He then referred me to an ENT who did the same thing and also saw the narrowing. Then came two CT's, which did not show anything. Then came the bronchoscopy in which the narrowing was visible. Two weeks later I had my first laser surgery. The ENT said it had looked as if I had been kicked in the throat at some point in my life. I have some kind of shelf thing happening around my crichoid. I became too much for him to handle and he then referred me to another ENT in Denver. So, now I have had six laserings done and am going for my resection as soon as the scar tissue "looks" right.

I guess the first symptoms were wheezing or stridor. The out of breath feeling was more like a panic attack feeling to me. Then, since your body is working so hard to get air, you are completely exhausted. You cannot complete a sentence without taking a couple of breaths. It is a condition that is not diagnosed correctly in most cases. More women tend to get it than men..... why? no one seems to know. Hope this helps.... sorry it was soooooo long... It could be longer!!!

Denice :wave:[/QUOTE]
Denice,

Thanks so much for the info. I don't mind that it's a long message. I think it is great to learn more about what can be causing problems. I think it is a real shame that people waste so much time (and money) doing treatments that don't help.

I think that is interesting that an allergist figured this out and sent you to an ENT. I went to an allergy/asthma clinic. He never looked for anything like that. In fact, he admitted that he's never seen asthma behave like my lungs -- just a constant slight shortness of breath. He didn't think asthma would be the problem. But when he saw that my methacholine challenge had been positive (even though I'ven ever had an asthma attack), he said maybe the allergy shots would help. So I've spent 9 months, and LOTS of dollars on those. I think it's a complete waste of money. I tested positive to quite a few allergens, but I don't have a runny nose or watery eyes or anything like that. And these shots haven't made a BIT of difference in my breathing. So frankly, even though I test positive to these allergins, I don't think they bother me.

Too bad my allergist wasn't like yours. He should have said, "You know, this just doesn't add up. I've never seen asthma act like this before. Let's look into this and see if we can figure something else out." Instead, he just saw dollar signs and talked me into getting shots. I'm sure it's been over $2000 by now. I think you were lucky to have found the allergist you went to!!

The two pulmonary doctors I saw said pretty much the same thing -- never saw asthma behave like this. Yet they insisted on treating me for asthma!! The last time I saw that pulmo, I asked if she had any other ideas, and she said no, but she'd be happy to send my records to another doctor. I asked about a CT scan. She said "I don't think it's indicated, but I'll order one if you want." So I said let's wait a few weeks and see if Advair helps. It didn't, and I called back. Then she said no, she wouldn't order a CT scan!! And wouldn't even get on the phone and discuss it with me, just passed the message through the receptionist!

Thank goodness I have now found a doctor who seems willing to try to get to the bottom of this. I hope he figures it out.





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