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New member looking for advice on doctors and navigating illness
I was very happy to find this group a few months ago. I found a lot of helpful posts and now it’s time for a question.
I was diagnosed with asthma in my 20s. I’m 54 now. Since August of 2023, I’ve had a cough with yellow mucus and shortness of breath. I was given a round of prednisone and 2 rounds of antibiotics. Cough continued and the fun began.
Asthma, allergy, sinus, GERD work ups. GERD was the prevailing diagnosis but continue cough with mucus after 2 months of 80mg omeprazole. Next, lungs…PFT shows obstruction. CT scan in Sept 2024 showed findings consistent with MAC - bilateral bronchitis, bronchial wall thickening, bronchiectasis, bronchiolitis. Negative cultures for MAC. Negative aspergillus. Still coughing with yellow mucus. I went strong on airway clearance and good aerobic exercise. Repeat CT in December showed some improvement in bronchitis and bronchiolitis and I reinflated my lung. Go me!! After following up with doc and seeing these improvements, he has now suggested I have bronchiolitis obliterans. This came from a discussion with more senior colleague. I was a little surprised after reading about it. I smoked in college for 3 years and have never worked with or around chemicals. I know lung diseases are hard to diagnose but I’m starting to question things. Doc seems hesitant to do bronchoscopy or lung biopsy, and I’m not too excited about them either. He has scheduled a repeat PFT for April to see if there’s progression. I’m at a crossroads. Should I seek another opinion or perhaps go to one of the university pulmonary clinics here in NC? I’m doing okay. I do have shortness of breath and still coughing yellow to dark yellow mucus but can manage good exercise. I’m concerned about progression now and don’t want to go another year without a diagnosis and plan. Any advice?
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I cough constantly have for years. The cough made me go to pulmonologist
I asked because I really don't cough that often and I do wonder how it is for others.
I walked around with a cup for a year and a half before being diagnosed. I even carried it into the doctors offices yet not one said something is wrong while I was saying yes something is wrong.
I feel it coming up to my throat on its own. For me I either suck up the phlegm/sputum/mucus up and out or gargle it up and out to get it out of my throat. I mostly cough when I do airway clearance, huff coughing.
I finally thought to look it all up just now. sucking mucus up and gargling mucus up and out vs coughing. There is information on both...sucking it up and gargling it up, much to my surprise, and as well what a cough is.
The doctors assume one coughs.
I have had to tell the doctors, no I don't cough I suck it up or loosen it by gargling it up and out. The doctors seem to prefer to call it a cough.
No matter how I get it up and out it both ways, all ways, can indicate an infection.
My PCP agreed that it is best to remove it yet the pulmonologist said swallow it and that I won't do. Go figure.
My concern is that it might be two things at one time, mucus caused by the hiatal hernia and as well by the BE/MAI and I don't know if there is a way to tell the difference.
A hiatal hernia can cause mucus and the development of ones wanting to constantly clear the throat, from what I have read. For me it is nearly constant coming up to my throat and especially after I eat. It subsides some a good while after I eat. I was told at NJH I have a small hiatal hernia.
So for me that's my story and we all have one!
Barbara
I had a picc line for Amikaicin for 8 weeks (4 weeks before surgery, 4 weeks after). I dreaded it, but actually I had no problem (you have to watch for signs of infection). I chose to go to an infusion center rather than do it myself at home. Much preferred that, as nurses were always looking at it and flushing it etc. Good luck!