1. < MAC & Bronchiectasis

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?

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Beth Kiefer | @mrf5629 | Oct 28, 2020

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.

REPLY
1 reply
baz10 | @baz10 | Oct 28, 2020
In reply to @alleycatkate "My goodness...4 miles on the treadmill 5X a week is phenomenal!! I am no Dr. but..." + (show)
@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

Jump to this post

Great reply, Kate!

REPLY
Echo R | @coco1970 | Oct 28, 2020
In reply to @mrf5629 "I’m certainly no expert and you don’t say where you are being seen, but I would..." + (show)
@mrf5629

I’m certainly no expert and you don’t say where you are being seen, but I would certainly get a second opinion. Also, the pulmonologist may interpret your CT scan differently than the radiologist who did the CT scan.

Jump to this post

Yes. I probably need to calm down until I have my appointment. I am hoping the wording of the radiologist makes the findings seem scarier than they may actually be.

REPLY
Mentor
Sue, Volunteer Mentor | @sueinmn | Oct 28, 2020

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

REPLY
2 replies
Echo R | @coco1970 | Oct 28, 2020
In reply to @merpreb "@coco1970- It's very unhinging to learn that we aren't well. Has your Pulmonologist ordered any inhalers..." + (show)
@merpreb

@coco1970- It's very unhinging to learn that we aren't well. Has your Pulmonologist ordered any inhalers or oral medicines for you so that your breathing is easier?

Jump to this post

Yes. On my visit prior to the CT scan he put me on Flovent. I have been on it a little over two weeks and I don't seem to be coughing as frequently.

REPLY
Echo R | @coco1970 | Oct 28, 2020
In reply to @irene5 "@coco1970 End stage means your lungs have been compromised sufficiently so that little can be done..." + (show)
@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

Jump to this post

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.

REPLY
Echo R | @coco1970 | Oct 28, 2020
In reply to @colleenyoung "Hi @coco1970, I add my welcome to you. You'll notice that I merged the 2 discussions..." + (show)
@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?

Jump to this post

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.

REPLY
Echo R | @coco1970 | Oct 28, 2020
In reply to @alleycatkate "My goodness...4 miles on the treadmill 5X a week is phenomenal!! I am no Dr. but..." + (show)
@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

Jump to this post

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.

REPLY
1 reply
Echo R | @coco1970 | Oct 28, 2020
In reply to @mrf5629 "One last thing I forgot to mention. I too was recently diagnosed with Bronchiectasis (March). I..." + (show)
@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.

Jump to this post

Thanks, Beth. Sending good thoughts your way.

REPLY
Echo R | @coco1970 | Oct 28, 2020
In reply to @sueinmn "Coco - I can't begin to tell you how frightened I was by my bronchiectasis diagnosis..." + (show)
@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

Jump to this post

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.

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.