Is anyone on here with Emphysema in their 20s?

I am 29 and newly diagnosed with Bullous Emphysema. This is my story, i have always had lung infection issues since i was a kid. I started smoking at 13, about a pack a day. I continued to smoke until my diagnosis, although there was about 2 years when i had quit. Two years ago, i had bronchitis, my Dr had me do an Xray. She called me and told me i needed to see a lung specialist. I went to see him, he showed me i had a bulla on my scan and i needed to do an A1AD test. It came back negative. He said it might have been a congenital issue, and there was nothing to be concerned about. So, i wasnt. I kept smoking. A couple years later, i suffered a rib fracture. Since then, i began to cough all day, and had moved to a new town. I got together with a new lung Dr, she ordered a new CT, i thought nothing of it. Then she calls me and says i had new bullae, the one i had was much larger, and now i have bullous emphysema. I am very anxious about the future. She redid the A1AD test, still came back normal. How did this happen so early, i just had a follow up CT a year ago and it was clear except for the original bulla! I also have scattered areas that are already collapsed, i cant remember the name of the condition though. Is anyone on here as young as i am with this condition, or can anyone with this type of experience give me advice on how to cope with it? I have a 2 year old daughter, im afraid to leave her behind. I also now have chest pain very often.

10 Replies

  • This cystic lung dieases but you have like air fluid spaces all over

    The say most people av bullous esp if tall and slim that dont cause much problems

  • Has the Dr told you how extensive the bullae are? Also have they sent you for a Lung function test yet?

  • Hello & welcome to the community. I'm sorry I can't give you information or advice, just wanted to say Hi. I'm sure you will get lots of information as other see your post, there's lots of help & expertise on hear. You've come to the right place. Best wishes Nan

  • yes they put in for the PFTs but it takes a long time to get an appointment since they are so backed up.

  • Hi sorry to hear about you diagnosis,I have a large bulla which they believe I may have had for years,but they don't seem to know for sure, ask them if it is definitely emphysema and not just damage from previous infections, have you had a lung function test at the hospital.

  • Yes unfortunately it is definitely bullous emphysema. I had several drs review my latest CT scan. Two years ago, I only had one large bulla as well, they told me the same thing, and told me not to worry. Just come in for yearly scans. Nothing changed for two years. Now I have several bullae, emphysema, atelectasis, and scarring. That's what I've been told. I did PFTs two years ago. They were normal. Now I cough up very thick olive green sputum and get winded by talking too fast, bending over, walking. ...etc. I'm getting more okay with the diagnosis, but it is very scary.

  • Oh and the atelectasis isn't thickened to suggest fibrosis. My dr warned me that I'm at risk for a "serious rapid decline in lung function". I guess I joined here to hopefully find someone like me to just talk about it, maybe get some advice or something.

  • I hope you do, I also have atelectasis which they are saying is also due to infection but I have had so many different opinions including that it was emphysema that I am just carrying on regardless, they are keeping a good eye on you and if your lung function is normal you are likely to have mild emphysema, the other problems need addressing you need to get your g.p to see if you have an infection, don't give up people on here have lived for years with this problem, thinking of you and hope you get some peace of mind

  • I did go in today because i had a mild temp 100.5, heart rate 130-150, heavier green mucus, and just felt bad. They took an X-ray and were concerned about an area looking like i had pneumonia, got a second opinion, and he decided it was Acute Bronchitis. Got some antibiotics and a few other meds, im hoping that this works for the stinging stabbing pains ive been feeling. Its more scary when i feel the pain. So, your atelectasis, is it acute or chronic? I wasnt told a whole lot about it.

  • I have no idea,g.p said its nothing to worry about, as I nderstwnd it it's a partial collapse of the lung that did not re inflate, in my case it might have been due to an operation years ago

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