Bullous Emphysema - 30 years old

[JayS]

I am only 30 years old, and a "single large bulla" was found on my right upper lobe during a chest X-Ray in early March, 2007.  I have been a heavy smoker since age 15 (quit the day of the diagnosis and haven't looked back), and am scared beyond belief.  I have yet to have a spirometry...am awaiting an appt at National Jewish in June, 2007.  I did have the blood test to check for Alpha-1 deficiency, and it came back normal (do not have the deficiency).

I don't know what to expect, but am very scared by all of this.  I am only slightly short of breath on exercise, or after a few flights of stairs...though I will say that since finding out about the bulla I am much more short of breath now (mental?).

Any idea on what all this means for my long term health/survival?  I am taking it very seriously (quit smoking, making dietary changes, etc.) as it has me quite scared.

Thank you for your time.

Jay

[National Jewish]

Bullae are a type of what are called pulmonary air cysts.  Bullae, including so-called giant bullae, are seen most commonly in smokers, located most often in the upper lobes, like yours.  When seen as a consequence of emphysema, they are usually small.  Bullae of any size may develop in the absence of emphysema.  Some cysts, including bronchogenic cysts, are congenital, others acquired.  Thus, this bulla may or may not be associated with your smoking and may or may not be a reflection of emphysema.  Simple spirometry, a type of pulmonary function test, would provide good evidence for or against smoking-induced emphysema.

When very large, these structures may compress adjacent lung, result in shortness of breath and be associated with pulmonary function test abnormalities.  In such instances, surgical removal of the bulla may be indicated.  In other instances, even when medium large they may have a trivial effect on pulmonary function and may not require surgery.

The distinction between these various types of air-filled structures would best be made with a CT scan of the chest by a chest radiologist.  This will be done when you come to National Jewish Medical and Research Center.  The pulmonologist you see here will recommend the most desirable course of action.

Do not panic.  The bulla is a benign structure and, being young and not having alpha-1 antitrypsin deficiency, you are unlikely to have clinically significant emphysema, despite your smoking history.  Either way, having quit smoking, you should never smoke again.

[starion]

Congratulations on quitting smoking!!!  That's the BEST thing you can do for your lungs, health and life!  It will make your future MUCH better.  Thirty is very young for emphysema and it's great that you have an appointment at National Jewish next month.  They are excellent and will probably have you get a Alpha-1 blood phenotype test and may have a confirming Alpha-1 test also.

A thorough evaluation and lots of good educational seminars and videos are available at National Jewish (NJ(.  The staff and physicians are VERY helpful and will answer all your questions and work with your medical team at home.

If you can, it is helpful to bring a loved one with you to National Jewish to help take notes and gather information so both of you can digest all there is to learn.  

I was diagnosed with severe emphysema at age 42 and flew to NJ for a complete evaluation.  It was the BEST thing I ever did.  With treatment, I am doing better than I have for many years prior to diagnosis and they expect that my life expectancy will be very long, like my extended family, as long as I avoid infections (which is very important when we have lung conditions).  I can and do engage in nearly all the activities I always have and expect the same will be true for you, as long as you keep off smoking, avoid infections, and work with your docs.

Good luck!
Starion

[JayS]

Thanks for the reply.  I have already been blood tested for the Alpha-1 deficiency, and it came back normal (I do NOT have an Alpha-1 deficiency).

I have, however, had a basic spirometry since my post of yesterday.  My FVC1 and FVC are normal-to-above-normal (FVC1 is 97% of normal for my age/height...30 yrs, 5-foot-9; my personal FVC1:FVC is 81%...I'm getting 81% of my FVC out in the first second of forced expiration.  Nonetheless, I have quit smoking....forever....and I will be going to see a specialist at National Jewish in June (on 6/22) to figure out what is going on with the large bulla found on the x-ray.  I don't know what the future holds for me...but I feel better mentally since seeing some of my lung function results, at least on a preliminary basis.

I am glad to hear you are doing well with your emphysema.  I hope you continue to do well, and my thoughts are with you!

Regards,

jay