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.

It does not mean lobectomy. Keep moving:)

REPLY
@fracturedd

It does not mean lobectomy. Keep moving:)

Jump to this post

Thanks for the response. I have been trying to go about my usual routine knowing that I don't feel quite right and I will continue to do this until my appointment. I've been trying to jog 4 miles on the treadmill at least 5 times a week. I haven't noticed myself being breathless but do get a "not quite right" feeling almost like a disconnect from my brain to my body. I guess this is normal because I don't feel quite right even sitting still. I think I am still trying to process that there is something actually wrong with me.

REPLY
@coco1970

Thanks for the response. I have been trying to go about my usual routine knowing that I don't feel quite right and I will continue to do this until my appointment. I've been trying to jog 4 miles on the treadmill at least 5 times a week. I haven't noticed myself being breathless but do get a "not quite right" feeling almost like a disconnect from my brain to my body. I guess this is normal because I don't feel quite right even sitting still. I think I am still trying to process that there is something actually wrong with me.

Jump to this post

@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?

REPLY
@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?

Jump to this post

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.

REPLY
@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?

Jump to this post

@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

REPLY

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?

REPLY

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?

REPLY
@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

@irene5- Good morning. @coco1970 stated that the CT scan showed end-stage Bronchiectasis showed up in her middle right lobe. I think that she needs to wait for her next appointment and hopefully a second opinion.

@sueinmn- Is it possible to have end-stage Bronchiectasis in only one lobe?

REPLY

Yes it is possible. Each lung is different. I have endstage lung disease in left lower lung.

REPLY

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

REPLY
Please sign in or register to post a reply.