CT Scan Shows End Stage Bronchiectasis In One Lobe

Posted by Echo R @coco1970, Oct 27, 2020

I just turned 50 and have lead an active and healthy life other than being hospitalized twice when I was very young with pneumonia. In March I started having trouble with chest heaviness and just a general “not right” feeling in my chest. I recently had a CT scan and the findings were end-stage bronchiectasis in my right middle lobe. I will admit that I lead a busy life and have maybe not been so in tune in the last 5 years with subtle symptoms. My follow-up appointment with my pulmonologist is over a month away and I am terrified. Has anyone else been diagnosed with end-stage bronchiectasis? I know there is going to be no repairing this but will it mean a lobectomy?

@irene5

@coco1970 End stage means your lungs have been compromised sufficiently so that little can be done to repair the damage except to have a lung transplant. With that said, my husband was diagnosed with end stage sarcoidosis, and there was discussion about a lung transplant. We liked this pulmonologist very much but went to another lung specialist in another state. I agree with Beth – it never hurts to get a second opinion. It can only add information to help you make a more informed decision about your health. irene5

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I will wait and see what is said at the follow-up appointment. I think the wording of end-stage by the radiologist is what has me the most worried. When I google that term with bronchiectasis I don't come up with anything. I should probably stop googling and wait to talk to the doctor.

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@colleenyoung

Hi @coco1970, I add my welcome to you. You'll notice that I merged the 2 discussions that you started into one discussion in the MAC & Bronchiectasis group (https://connect.mayoclinic.org/group/mac-bronchiectasis/). I did this so you can connect with members like @windwalker @gaylesunflower1 @baz10 @judyhodgern @sueinmn @alleycatkate @mrf5629 @auntnanny as well as those who have already offered advice and support here.

You may also be interested in this discussion:
– Bronchiectasis: New Diagnosis https://connect.mayoclinic.org/discussion/bronchiectasis-new-diagnosis/

Coco, I can imagine that you're very frightened. Did you know that you had bronchiectasis before this recent news that it is end-stage? Or is the first you've heard that you have bronchiectasis?

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Thanks for merging the discussions. I have been going between my desktop and a tablet and it had me confused. This is the first I have learned of the bronchiectasis. I think that is what has me so confused. I'm not sure what happened to all the stages in between. I have always had a cough. Especially, when I lay down at night. I had been told that I had some scarring from the pneumonia when I was young. I had a chest x-ray in July and that the radiologist said looked normal. I was lucky that the pulmonologist looked at that x-ray and compared it to one I had done 5 years ago and saw a difference and ordered the CT scan.

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@alleycatkate

My goodness…4 miles on the treadmill 5X a week is phenomenal!! I am no Dr. but strongly suggest you seek a second opinion, preferably with someone that specializes in bronchiectasis. Often bronchiectasis goes hand in hand with other "bugs" such as MAC so I think that someone that specializes in your disease would be beneficial. By the way…there are many on this site that would love to do one mile on a treadmill without being winded. Please do not take the word of one person for a diagnosis….especially when it seems to be so negative. My Dr says he believes I have had Bronchiectasis since childhood…. A good diagnosis is imperative along with knowledgeable maintenance. Are you near any Mayo Clinics or perhaps National Jewish Health in CO? I know lung disease diagnosis is frightening but try to relax till you get good professional advice. I discounted the advice from my local pulmonologist and headed to Mayo. It was there that I got good explanations, help with managing the diseases, and felt reassured with the Dr.'s recommendations. I am mild with both MAC and Bronchiectasis and believe I can remain that way. Many times you just need to adjust to the new you. At first, I was overwhelmed by a diagnosis, but feel fortunate to have the diagnosis so that now I can take good maintenance measures. Good luck and know that everyone on this site is here to help guide you.
Kate

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I am in Idaho so not near any Mayo clinics but I will travel if I don't feel I am getting good information. I will say I am lucky that the pulmonologist looked at a recent x-ray and compared it to one from 5 years ago and ordered the CT scan. He seems to be proactive in trying to help me. I am extremely committed to exercise. I was under weight during childhood and as a young adult and was sick often. I'm not even sure why but around 35 I started weight training and running and put on weight and noticed that I was sick less frequently. Within the last couple of years I have felt not quite right and have gotten the sense from my primary that since I am active there must not be anything wrong with me. I am so thankful for this site and all of you. It is nice to be able to communicate with people that are living with similar problems.

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@mrf5629

One last thing I forgot to mention. I too was recently diagnosed with Bronchiectasis (March). I spent a fair amount of time castigating myself for not recognizing signs, not getting a consult early enough, not putting my health ahead of my busy career. Please try to stop yourself every time you start thinking that way. It does you and your future health no good.

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Thanks, Beth. Sending good thoughts your way.

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@sueinmn

Coco – I can't begin to tell you how frightened I was by my bronchiectasis diagnosis at first. Unlike you, I was very ill for months (actually years) with undiagnosed pseudomonas and MAC infections and a sharp-eyed radiologist recognized the problem on an x-ray. It took over a month to see the pulmonologist and longer still to get a CT, an exact diagnosis of both infections and begin treatment. Learning all I could about the condition, and realizing there are treatments for the infections and the lungs helped me immensely. 2 1/2 years later, I am still learning, especially from people in this group who share my journey.

I too wish I had been more conscious of feeling "not quite right" for a very long time, but that's the past – now I pay better attention. But it is very important to get a more exact diagnosis of what caused the condition and figure out whether it is treatable. My lungs had numerous large pockets of infection – medication and airway clearance reduced or eliminated those, and now I just have to deal with the actual bronchiectasis, which differs in severity in each lobe of my lungs.

Here is one thing I learned after over a year that I wish I would have understood much sooner – you need not just a pulmonologist, but one who is experienced in treating bronchiectasis specifically. It is not the same as COPD or asthma, it is what I call a "life sentence" not a death sentence, and it requires someone who understands. Also, one diseased lobe in a lung does not necessarily limit your life – just demands extra caution and vigilance. My friend has been living a great life for over 40 years without 1/3 of each lung due to a different medical issue.

That said, after 2 1/2 years, I have beat one infection, controlled the other, healed some of the lesions in my lungs, and gotten back to being able to exercise and live my life.
Let us know what you learn as you go forward.
Sue

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Sue- Thanks so much for your reply. I can't tell you how much better I am feeling after posting and reading replies from this great group. I feel much better about my future.

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@coco1970

I am in Idaho so not near any Mayo clinics but I will travel if I don't feel I am getting good information. I will say I am lucky that the pulmonologist looked at a recent x-ray and compared it to one from 5 years ago and ordered the CT scan. He seems to be proactive in trying to help me. I am extremely committed to exercise. I was under weight during childhood and as a young adult and was sick often. I'm not even sure why but around 35 I started weight training and running and put on weight and noticed that I was sick less frequently. Within the last couple of years I have felt not quite right and have gotten the sense from my primary that since I am active there must not be anything wrong with me. I am so thankful for this site and all of you. It is nice to be able to communicate with people that are living with similar problems.

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@coco1970When you wrote that your primary assumes there is nothing wrong with you because you are an active individual I cringed a tad. Listen to your body and it’s infinite wisdom @coco1970. A dear friend said those words to me several years ago, and I have never forgotten them. irene5

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This is the first time I have ever heard bronchiectasis being identified by stages. I have only heard of it being described in degrees, such as mild, severe, etc. Bronchiectasis is not curable. But it alone will not kill you either. The only problem that those of us who have been diagnosed with it are facing is the possibility of catching other lung-related illnesses because of this condition. I agree with some of the people here that you should seek a second opinion to see if you have other lung-related issues besides bronchiectasis. Many of us here have had bronchiectasis for many, many years and almost all of us have had lung-related illness(es) due to bronchiectasis. Let us know what your pulmonologist say after your appointment. In the meantime, try not to worry or frighten yourself. But we've all been there and can empathize.

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@ling123

This is the first time I have ever heard bronchiectasis being identified by stages. I have only heard of it being described in degrees, such as mild, severe, etc. Bronchiectasis is not curable. But it alone will not kill you either. The only problem that those of us who have been diagnosed with it are facing is the possibility of catching other lung-related illnesses because of this condition. I agree with some of the people here that you should seek a second opinion to see if you have other lung-related issues besides bronchiectasis. Many of us here have had bronchiectasis for many, many years and almost all of us have had lung-related illness(es) due to bronchiectasis. Let us know what your pulmonologist say after your appointment. In the meantime, try not to worry or frighten yourself. But we've all been there and can empathize.

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ling123–I, too have not heard of bronchiectasis being described in stages. I was diagnosed with it 5 years ago, but nothing has ever been said about it being in stages. Glad that you mentioned this! Thanks. Baz 10

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@coco1970

I just turned 50 and have lead an active and healthy life other than being hospitalized twice when I was very young with pneumonia. In March I started having trouble with chest heaviness and just a general "not right" feeling in my chest. I recently had a CT scan and the findings were end-stage bronchiectasis in my right middle lobe. I will admit that I lead a busy life and have maybe not been so in tune in the last 5 years with subtle symptoms. My follow-up appointment with my pulmonologist is over a month away and I am terrified. Has anyone else been diagnosed with end-stage bronchiectasis?

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Coco, I have never heard of end stage bronchiectasis either. You may want to ask your dr to clarify just what exactly that means.

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@irene5

@coco1970 End stage means your lungs have been compromised sufficiently so that little can be done to repair the damage except to have a lung transplant. With that said, my husband was diagnosed with end stage sarcoidosis, and there was discussion about a lung transplant. We liked this pulmonologist very much but went to another lung specialist in another state. I agree with Beth – it never hurts to get a second opinion. It can only add information to help you make a more informed decision about your health. irene5

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@coco1970 and Irene. Sometimes with bronchiectasis, if just a section of lung is so irreparably damaged; that just that section can be removed.

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@windwalker

@coco1970 and Irene. Sometimes with bronchiectasis, if just a section of lung is so irreparably damaged; that just that section can be removed.

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@windwalker Yes, that is correct Terri. ( Irene)

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Oh my goodness! Terminology! I have never heard of "end stage " bronchiectasis but it sure would scare the heck out of anyone. Doctors should be more careful with the words they use!

In copd, the scale that doctors used to use had 4 stages from miId to very severe. Sometimes they would refer to stage 4, very severe, as end stage. All it meant was that the patient is on all the current medication and treatments and science does not have anything else to offer. It may be end stage because there are no more stages but people with stage 4 copd live for many MANY years. Please do not think of it as end iof life stage. No one has an expiration date though I have often expected the radiologist to find a sign during my many ct scans that says "use by 1995."

I hope your pulmonologist has experience with bronchiectasis and you should keep on with your extremely impressive workout. Meanwhile please try to forget the unfortunate terminology.

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@sueinmn

Coco – I can't begin to tell you how frightened I was by my bronchiectasis diagnosis at first. Unlike you, I was very ill for months (actually years) with undiagnosed pseudomonas and MAC infections and a sharp-eyed radiologist recognized the problem on an x-ray. It took over a month to see the pulmonologist and longer still to get a CT, an exact diagnosis of both infections and begin treatment. Learning all I could about the condition, and realizing there are treatments for the infections and the lungs helped me immensely. 2 1/2 years later, I am still learning, especially from people in this group who share my journey.

I too wish I had been more conscious of feeling "not quite right" for a very long time, but that's the past – now I pay better attention. But it is very important to get a more exact diagnosis of what caused the condition and figure out whether it is treatable. My lungs had numerous large pockets of infection – medication and airway clearance reduced or eliminated those, and now I just have to deal with the actual bronchiectasis, which differs in severity in each lobe of my lungs.

Here is one thing I learned after over a year that I wish I would have understood much sooner – you need not just a pulmonologist, but one who is experienced in treating bronchiectasis specifically. It is not the same as COPD or asthma, it is what I call a "life sentence" not a death sentence, and it requires someone who understands. Also, one diseased lobe in a lung does not necessarily limit your life – just demands extra caution and vigilance. My friend has been living a great life for over 40 years without 1/3 of each lung due to a different medical issue.

That said, after 2 1/2 years, I have beat one infection, controlled the other, healed some of the lesions in my lungs, and gotten back to being able to exercise and live my life.
Let us know what you learn as you go forward.
Sue

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Hello Sue, You mention "you need not just a pulmonologist, but one who is experienced in treating bronchiectasis specifically" Any tips on how to locate a pulmonologist with a lot of bronchiectasis experience? Thanks for all your good input. Bill

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@rits

Oh my goodness! Terminology! I have never heard of "end stage " bronchiectasis but it sure would scare the heck out of anyone. Doctors should be more careful with the words they use!

In copd, the scale that doctors used to use had 4 stages from miId to very severe. Sometimes they would refer to stage 4, very severe, as end stage. All it meant was that the patient is on all the current medication and treatments and science does not have anything else to offer. It may be end stage because there are no more stages but people with stage 4 copd live for many MANY years. Please do not think of it as end iof life stage. No one has an expiration date though I have often expected the radiologist to find a sign during my many ct scans that says "use by 1995."

I hope your pulmonologist has experience with bronchiectasis and you should keep on with your extremely impressive workout. Meanwhile please try to forget the unfortunate terminology.

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rits, What a lovely reply! It should make anyone feel better about a diagnosis like that. Thanks so much. Baz

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@poodledoc

Hello Sue, You mention "you need not just a pulmonologist, but one who is experienced in treating bronchiectasis specifically" Any tips on how to locate a pulmonologist with a lot of bronchiectasis experience? Thanks for all your good input. Bill

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@poodledoc I’m sure You can search on the NTM website for doctors in your area. Or you can probably also contact Mayo Clinic for recommendations.
That’s just my guess.

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