CT Scan Shows End Stage Bronchiectasis In One Lobe

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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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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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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@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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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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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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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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