After many months of coughing - CT chest scan shows bronchiectasis

Posted by ninjanana @ninjanana, May 16 5:44pm

I am so glad I found this forum. I am a little numb. I am 62 and always been very healthy and active, no lung or other issues. Nine months ago I got flu-like symptoms after taking care of my grandkids who had RSV and ear infection. I was traveling and an acute care office said x-ray did not appear to be pneumonia but I was feeling so bad and coughing so they treated me with antibiotics. I recovered nicely after that but have had daily coughing (mostly with lying down) several URIs with bad coughing, body aches ranging from every day to a day or two a week and low grade fevers. Once a month I was getting bad body aches and 101 fever for a couple of days so I consulted my GP in November who immediately referred me to a pulmonologist. Long story short, I could not get an appointment for two months (and that was with the nurse practitioner), had a normal pulmonary function test, got Covid when it was time to see the pulmonologist (no symptoms) and could not get another appointment for three months! Finally saw her in April and she recommended a chest CT scan which was done mid April and I just had my appointment to discuss results (with the nurse practitioner, NOT the doctor). Impression: Bilateral basilar and right middle lobe reticulomodular opactities and brochiectasis. The nurse practitioner did not give me the impression this was a permanent, irreversible condition (I had to find that out on the internet) and now I am scheduled for a bronchoscopy with BAL day after tomorrow (my pulmonologist's partner is going to perform it because she is out of town). Obviously I am going to get a second opinion (I have contacted National Jewish Health in Denver for a July appointment since I will be in Colorado this summer) but I'm fretting about the bronchoscopy and lavage. I know they are routine and I want it done as soon as possible but does it matter who performs them? I was also referred to a rheumatologist for the aching and fevers and he tried a high dose prednisone taper (18 days) and I have felt wonderful the whole time I was on it – no aches, no fevers, great energy and coughing got better but still a little coughing when lying down. I finished the taper yesterday. Sorry for the long post, just trying to get my head wrapped around this.

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

Oh my, trying to work on my phone and >I lost my reply.

Take a deep breath, and I'll try to respond tonight or in the morning from my laptop!
Sue

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Sue is a great resource for practical & intelligent advice. I will just mention that I was diagnosed 4 1/2 yrs ago at age 68. It was a slap in the face since I tried to exercise & take good care of myself. My pulmonary function tests have all been normal, but a bronchoscopy, CTs & multiple sputum tests have shown bronchiectasis & MAC. Hang in there. My major challenge has been hemoptysis which appears to be under control now. I believe that using a nebulizer with 7% saline has been the difference for me. So far no “big 3” . Getting a complete work up at National Jewish or Mayo would be great. Take care. Linda

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@ninjanana … The bronchoscopy is very helpful and routine. Try not to worry. If you get anxious, the doctor will relax you a little more as happened in my first test. The second and third were easy after I'd learned what was happening. No meds needed. This test is the best way to see what the structures actually have going on.
I've found that the nurse practitioners are better at listening and explaining. You are in good hands.

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@bee1950

Sue is a great resource for practical & intelligent advice. I will just mention that I was diagnosed 4 1/2 yrs ago at age 68. It was a slap in the face since I tried to exercise & take good care of myself. My pulmonary function tests have all been normal, but a bronchoscopy, CTs & multiple sputum tests have shown bronchiectasis & MAC. Hang in there. My major challenge has been hemoptysis which appears to be under control now. I believe that using a nebulizer with 7% saline has been the difference for me. So far no “big 3” . Getting a complete work up at National Jewish or Mayo would be great. Take care. Linda

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Thank you, Linda. The NP said they will be culturing for bacteria and that I may not have any, that the nodules just may be from inflammation. I am hoping for that. I'm still waiting to hear from the medical supply company who will send me the nebulizer and I guess my meds (Duoneb). NP did not say anything about saline but I will definitively be asking her about it. Nancy

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@egayle187

@ninjanana … The bronchoscopy is very helpful and routine. Try not to worry. If you get anxious, the doctor will relax you a little more as happened in my first test. The second and third were easy after I'd learned what was happening. No meds needed. This test is the best way to see what the structures actually have going on.
I've found that the nurse practitioners are better at listening and explaining. You are in good hands.

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Thank you! It helps to hear that. I'll try not to worry (too much).

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@bee1950

Sue is a great resource for practical & intelligent advice. I will just mention that I was diagnosed 4 1/2 yrs ago at age 68. It was a slap in the face since I tried to exercise & take good care of myself. My pulmonary function tests have all been normal, but a bronchoscopy, CTs & multiple sputum tests have shown bronchiectasis & MAC. Hang in there. My major challenge has been hemoptysis which appears to be under control now. I believe that using a nebulizer with 7% saline has been the difference for me. So far no “big 3” . Getting a complete work up at National Jewish or Mayo would be great. Take care. Linda

Jump to this post

Hi! I am new to this forum. It was very interested in your post because I have the same. Diagnosed with bronchiectasis in 2018 and suffered through excavation maybe twice a year. Then at the beginning of this year I started experiencing symptoms of fever fatigue shortness of breath etc. Unfortunately I’ve never been able to produce Sputum, so after months of testing and trying to rule out everything else, I did the bronchoscopy BAL. The culture grow Mac within a week. I’m now waiting antibiotic resistance/sensitivity tests on the culture. I tried to do the Saline induction so bronchoscopy would not be necessary but I can never do it.
And I had terrible reaction.
Anyway, I’m just curious what your symptoms are. I have run a fever for almost 4 months and no treatment but it’s a terrible quality of life with that and the all the other symptoms

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Hi Nana43, it is good to hear from another newbie! While my symptoms started in August of last year, I'm going to go back a little farther to something I think is related. In Feb. 2020 when Covid was first starting to come to US I had a very strange pneumonia. It started with fever and body aches and in a few hours the right side of my chest hurt when I took a breath. I went immediately to urgent care and they took a chest x-ray they said was normal and diagnosed pleurisy but gave me Amoxicillin because my WBC was high. They were not Covid testing at that time. By morning I could hardly breath, could only take shallow breaths because of the pain. I went to an ER who took another x-ray and said I had pneumonia. I was not coughing at all and did not have any congestion, only fever and body aches. They said the Amoxicillin would take care of it and gave me Toradol for the pain. The pain was gone in a few hours and I recovered from my body aches and fevers in a few days, never had cough or congestion. I went back to being my healthy, hardly ever sick self. In August of 2021 I got sick (see previous post) and over the next few weeks had intermittent (about 2-3x per week) mild body aches and low grade fevers (99-100) and was coughing daily but only when laying on my back, each time the coughing only lasted briefly but my chest rattled. I thought it was just taking a while to get over my illness. Late September while traveling I had what I think was an exacerbation. I had bad body aches and 101 fever for one day. Chest x-ray said I had atelectasis, Covid test was negative, I was given a spirometer. I continued with intermittent mild body aches (usually after playing pickleball) and low grade fevers. I had another exacerbation (bad body aches/101 fever for two days) in November and went to my family doctor. He referred me to a pulmonologist who I couldn't get in to see until January. Right after I saw my FP in November I got a bad cold and the cough got terrible, coughing up yellow/green mucous. Another chest x-ray said I had minimal scarring. The fevers and mild body aches became a daily occurence but they responded well to Ibuprofen and Tylenol. I was taking NSAIDS every day to keep them at bay. January my pulmonary function test was normal, but I got Covid that month (had an exacerbation just before that) and I could not get in to see the pulmonologist until April. Right before I saw her in April I had another bout of very painful pleurisy (diagnosed by ER) but my chest x-ray was completely normal. The pain went right away with Toradol. January through April the mild body aches and fevers became less frequent but increased to daily again in April. I was also sent to a rheumatologist and in April he gave me a high dose prednisone taper for 18 days and I had blessed relief from the aches and fevers the whole time and I did not cough as much. I got off the prednisone a few days ago and the mild aches and 99 fever started again but responds well to NSAIDS. At present my cough only occurs when I lay on my back and I only cough briefly and clear my throat for a few minutes and then can fall asleep. I got the results of my chest CT last week and they are in my first post. I had my bronchoscopy with BAL today and she said she saw pus in my lungs so now I wait for the cultures. Last night I had another bout of pleurisy with moderate pain that responded well to Tylenol. I would be interested to know how these symptoms compare to yours. Your fevers sound like they are affecting your life more than mine.

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@nana43

Hi! I am new to this forum. It was very interested in your post because I have the same. Diagnosed with bronchiectasis in 2018 and suffered through excavation maybe twice a year. Then at the beginning of this year I started experiencing symptoms of fever fatigue shortness of breath etc. Unfortunately I’ve never been able to produce Sputum, so after months of testing and trying to rule out everything else, I did the bronchoscopy BAL. The culture grow Mac within a week. I’m now waiting antibiotic resistance/sensitivity tests on the culture. I tried to do the Saline induction so bronchoscopy would not be necessary but I can never do it.
And I had terrible reaction.
Anyway, I’m just curious what your symptoms are. I have run a fever for almost 4 months and no treatment but it’s a terrible quality of life with that and the all the other symptoms

Jump to this post

I’m sorry to hear about the fever & other symptoms you are experiencing. I have been very fortunate over the past couple of years & my symptoms have mainly been a slight cough & hemoptysis. I did experience wt. loss about 18 mos after diagnosis, but was able to gain most of the wt. back. About a year after diagnosis, I began nebulizing, first with 3% sodium chloride, then moving up to 7% by mixing the 2 & stopping if my hemoptysis occurred. I believe the nebulizer (and masking) has helped keep me well. I hope you will get some relief soon. Take care.

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