New CT Scan shows MAI, Bronchietasis, Centrilobular Emphysema

Posted by karissy @karissy, Feb 12, 2022

Just had my second CT scan and it has added emphysema. Shocked the heck out of me. I didn’t realize that bronchietasis was a form of COPD and that it could go into emphysema. Has anyone else had a diagnosis like this? If so and you have any information would you please share it. I would appreciate your input. I don’t smoke . I did smoke for a few years in my teens but haven’t in at least 40 years. Thanks

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Here is some information about Bronchiectasis and COPD- similar but different diseases: https://lungdiseasenews.com/2015/01/26/copd-bronchiectasis-similarities-differences/

I have done some looking, and it is not uncommon for a person with compromised lungs to have multiple diseases. But I haven't found literature to show that Bronchiectasis advances into emphysema.

Here is a description of emphysema, which is quite different than Bronchiectasis but often coexists with chronic bronchitis. https://www.mayoclinic.org/diseases-conditions/emphysema/symptoms-causes/syc-20355555

If you have two or more chronic lung diseases, it is really important to find a pulmonologist experienced in treating complex lung disorders. Since you are newly diagnosed, have you considered having a conversation with your doc about their experience, and the possibility of referral to a specialized practice?

Sue

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@sueinmn

Here is some information about Bronchiectasis and COPD- similar but different diseases: https://lungdiseasenews.com/2015/01/26/copd-bronchiectasis-similarities-differences/

I have done some looking, and it is not uncommon for a person with compromised lungs to have multiple diseases. But I haven't found literature to show that Bronchiectasis advances into emphysema.

Here is a description of emphysema, which is quite different than Bronchiectasis but often coexists with chronic bronchitis. https://www.mayoclinic.org/diseases-conditions/emphysema/symptoms-causes/syc-20355555

If you have two or more chronic lung diseases, it is really important to find a pulmonologist experienced in treating complex lung disorders. Since you are newly diagnosed, have you considered having a conversation with your doc about their experience, and the possibility of referral to a specialized practice?

Sue

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Thanks for your info. I go to Cedar Sinai Hospital in Los Angeles. That is A teaching hospital. They also have an advanced lung center and I am going to a Pulmonary doctor an infectious disease doctor that are affiliated with Cedars Sinai I have an appointment in March for four different things and that is to see both doctors to retrieve sputum and a breath test. So I will find out more I’m sure then. The thing that puzzles me is I had a CT scan in August of last year just six months ago and it never said anything about emphysema. This is the first time I have ever had anyone tell me this. So I will have a lot of questions to ask and hopefully get some good answers. I am so overwhelmed I just have no idea why my luck has been so bad. I thought when I became 71 years old I had made it so I wouldn’t have all these illnesses . But I guess not I am still dealing with the MAI disease. The doctor just wants to wait and see at this point. I had my CT scan come back and everything has l Has stayed stable. Always thought I was extremely healthy so this whole thing is taking a toll on me but it’s probably that way for everybody.

REPLY
@sueinmn

Here is some information about Bronchiectasis and COPD- similar but different diseases: https://lungdiseasenews.com/2015/01/26/copd-bronchiectasis-similarities-differences/

I have done some looking, and it is not uncommon for a person with compromised lungs to have multiple diseases. But I haven't found literature to show that Bronchiectasis advances into emphysema.

Here is a description of emphysema, which is quite different than Bronchiectasis but often coexists with chronic bronchitis. https://www.mayoclinic.org/diseases-conditions/emphysema/symptoms-causes/syc-20355555

If you have two or more chronic lung diseases, it is really important to find a pulmonologist experienced in treating complex lung disorders. Since you are newly diagnosed, have you considered having a conversation with your doc about their experience, and the possibility of referral to a specialized practice?

Sue

Jump to this post

Hi Sue thank you for responding. I will see my pulmonologist March 17. I have never been told or have any symptoms regarding having COPD or emphysema. So when the CT scan showed it I spoke with my ID because he was the one that ordered the scan. It read “stable mild centrilobular emphysema “ My lung function is still 98-99 percent. I will have to talk to the pulmonologist next month. Both doctors are at Cedars-Sinai where they have a large Advance Lung department. They are a teaching hospital.They also do a lot of lung transplants. For some reason my luck has been so bad the last five years. I definitely would not play the lottery. My anxiety and depression is off the chart. Will have to see what they say next. I may have to reach out for another opinion some where else. Thanks

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@karissy I had a CT scan done last September at NJH in Denver and it showed scattered centrilobular lucencies suggestive of emphysema. I have cystic fibrosis in addition to bronchiectasis and have pseudomonas which is chronic, meaning they can't get rid of it. My oxygen is typically in the low 90's on a good day and I use oxygen at night. When I have an exacerbation, my oxygen is one of the first things to indicate that I'm having issues. My doctor said that the damage to my lungs has created this emphysema condition and that it's not reversible. Linda @lindam272

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@lindam272

@karissy I had a CT scan done last September at NJH in Denver and it showed scattered centrilobular lucencies suggestive of emphysema. I have cystic fibrosis in addition to bronchiectasis and have pseudomonas which is chronic, meaning they can't get rid of it. My oxygen is typically in the low 90's on a good day and I use oxygen at night. When I have an exacerbation, my oxygen is one of the first things to indicate that I'm having issues. My doctor said that the damage to my lungs has created this emphysema condition and that it's not reversible. Linda @lindam272

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Thank you for replying. I wondered if I was the only one that this had happened to. I am of course afraid for the future. Right now stable but I know it progresses. My air is still 98 but I know that can change quickly. God Bless

REPLY
@lindam272

@karissy I had a CT scan done last September at NJH in Denver and it showed scattered centrilobular lucencies suggestive of emphysema. I have cystic fibrosis in addition to bronchiectasis and have pseudomonas which is chronic, meaning they can't get rid of it. My oxygen is typically in the low 90's on a good day and I use oxygen at night. When I have an exacerbation, my oxygen is one of the first things to indicate that I'm having issues. My doctor said that the damage to my lungs has created this emphysema condition and that it's not reversible. Linda @lindam272

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R u a candidate for lung transplant?

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@karissy

Hi Sue thank you for responding. I will see my pulmonologist March 17. I have never been told or have any symptoms regarding having COPD or emphysema. So when the CT scan showed it I spoke with my ID because he was the one that ordered the scan. It read “stable mild centrilobular emphysema “ My lung function is still 98-99 percent. I will have to talk to the pulmonologist next month. Both doctors are at Cedars-Sinai where they have a large Advance Lung department. They are a teaching hospital.They also do a lot of lung transplants. For some reason my luck has been so bad the last five years. I definitely would not play the lottery. My anxiety and depression is off the chart. Will have to see what they say next. I may have to reach out for another opinion some where else. Thanks

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Hoping u r being treated for the anxiety and depression….

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@susie333

R u a candidate for lung transplant?

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No, I'm not.

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@susie333

Hoping u r being treated for the anxiety and depression….

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No I am not.

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Hello karissy. I am sorry to hear that you got that diagnosis. I am in the same boat. I know what a blow it is to hear that kind of news. How are you handling it?

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