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?
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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.
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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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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@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.
Liked by irene5 Irene Estes, Terri Martin, Volunteer Mentor, alleycatkate, Sue, Volunteer Mentor ... see all
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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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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@coco1970 and Irene. Sometimes with bronchiectasis, if just a section of lung is so irreparably damaged; that just that section can be removed.
Liked by Teresa, Volunteer Mentor
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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rits, What a lovely reply! It should make anyone feel better about a diagnosis like that. Thanks so much. Baz
Liked by Colleen Young, Connect Director, rits
@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.
@coco1970
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.