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Unrelated CT Scan - Unexpected results! What now?
Hi All,
In the last few months I have been dealing with what I believe to be silent reflux. Symptoms are mainly post nasal drip, coughing and throat clearing. First GI doc agreed to an endoscopy but said "nothing to see here". Second opinion Doc took me seriously and arranged another endoscopy with a 96 hr Bravo test and agrees I have mild acid reflux and I am trying a PPI. However, after waking from my lovely propofol nap after the second endoscopy, I was in a lot of pain which led the Doc to arrange for all sorts of tests before he would let me go home. One of the tests was a CT scan with contrast (they were worried I had a perforation). Eventually they cleared me to go home but a day or so later I was sent a copy of the Radiologist's findings and there it was, half way down the page, "Right middle lobe Bronchiectasis present". There was some other stuff like "chronic infiltrates" and "tree in bud densities" and just to top it all off an 8mm nodule. My eyes just kept getting wider and I started to hyperventilate. Just kidding but it definitely got my attention.
GI doc has said nothing about all this and unfortunately I don't currently have a PCP as the last two went Concierge on me.
I'm 67(F) and, apart from the recent reflux, I thought I was pretty healthy. No on-going prescription meds. However, I am the type that always gets a cough after a cold. Sometimes it lingers and I have had pneumonia 3 times in the last 12 years or so. I've also, in the past, had a chronic cough caused by a sinus infection. Everything clears up with antibiotics.
Never smoked but subject to a fair bit of second-hand smoke including from both parents til aged 12 and 10 years spent as a Flight Attendant in the "good old days" when smoking was still allowed. Oh, and my mother smoked while pregnant with me.
I feel fine. Walk 2.5 miles at least 5 days a week. No shortness of breath. Some weightloss from the very restricing Low Acid Diet for 8 weeks. But I do cough a bit most days generally a couple of hours after eating which lead me down the Acid Reflux rabbit hole in the first place. My only silver lining in this entire sad tale is that I live within 20 minutes of the Mayo Clinic in Scottsdale/Phoenix. I have requested an appointment and am waiting for a call back. My question to all you lovely people is, if I get the cold shoulder from the Mayo as I have in the past or their appointments are just too far out, should I try and find someone else? Any suggestions?
Thanks for reading.
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Hi “mustlovedogs”! I love dogs also.
My story isn’t too different: chronic cough & couple of pneumonias with mom who smoked. I also was athletic: rode my bike 50+ miles 3-4x/week. My PCP missed the diagnosis on a CT & I went almost 4 years without treatment. Glad you reached out to a group fast. I didn’t. The key thing is getting your CT interpreted, getting sputum cultures tested for anything growing in your lungs, and seeing a respiratory therapist to start airway clearance pronto. The last thing is the mainstay of treatment. Just keep reading on this disease & ask to go to a bronchiectasis specialist if you can get to one. Good luck to you!!!
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3 ReactionsI think, there should be a place where the CTs are anonymized and uploaded
and can be viewed by others and discussed.
Including automatic AI - interpretations.
There are some webpages that offer 2nd opinions on (thorax) CTs
but few reviews of their quality.and it's somehow complicated.
I’m really glad you paid attention to the CT. My CT was similar and my PMD missed it until I asked. (He hadn’t scrolled down past the routine labs. It was a f/u after urgent care had ordered one.)
I think you do need a pulmonologist, preferably one who treats a lot of patients with bronchiectssis and can guide you in airway clearance and monitoring the size of that nodule and for infections. Mayo seems a good choice if they take your insurance. I went to Rochester for diagnosis and a plan while I waited months for an opening at Penn. When I called, they suggested I call back on a Monday afternoon or Tues morning because they frequently get cancellation on those days. I did that and snagged one for the next week. I don’t know if Scottsdale has as many travelers or cancellations.
It’s great that you’re feeling good! If you start airway clearance with deep breathing and huff coughing and maybe an Aerobika or acapella device, that can help get out the mucus while you wait. There is a lot of info on earlier post on those.
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2 ReactionsGood morning! I think there's a lot of us who had our bronchiectasis and/or NTM first identified on a CT that was for something unrelated. Like you, I had no symptoms at all and I was hiking massive miles, running, the whole nine yards. My PC was shocked with the findings, but ultimately I ended up getting my MAC diagnosed and started treatment for it.
I'll leave suggestions for alternatives if Mayo isn't an option for you to others in your part of the country, but yes, definitely follow up. Reflux and right middle lobe findings are often part of the puzzle for bronchiectasis and the lung infections that often go with that diagnosis. And as suggested, getting started on airway clearance is a great idea.
Best of luck!
Laurel
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3 ReactionsThank you for all your comments. I have had a couple of conversations with Mayo here in Scottsdale. They have all my info and know who to contact for previous scans and Xrays. It seems my file will first go to a specialist to look at the nodule and decide if they want to see me now or wait for a second CT scan in a few months to see if anything has changed and basically come up with a plan over the phone although I did share with them that my sister passed away from lung cancer last year at 68 so that might get someone's attention. Second stop for my file will be a Doc who specializes in the BE issue (look at me using abbreviations already). I'm guessing that's more likely where I will get my first appointment (fingers crossed). I'm reading what I can about airway clearance. Is it OK to start this before I see a doctor? Can I even get the hypertonic saline without an RX? Seems Amazon may not be the recomended resource.
I hope the Mayo gives you an appointment with a pulmonogist. I had the same problems you had and blamed sinusitis and reflux. It ended up I have COPD and like you I did not smoke but was married to a man that did
@mustlovedogs
I have a somewhat similar story. Second hand smoke environment for many, many years, pneumonia 2x, no ongoing medications or long term treatment of a chronic illness before BE diagnosis and I have not started antibiotics, as yet, for the infection, MAC/MAI. I have always been told I was healthy, overall. Any surgeries were a breeze and I was up and running in no time after them, never a pain med with them or after them.
Immune system down from 2020 to 2022. My needing to clear my throat with a substance that kept coming up to my throat on its own approximately started 2021. PCD said post nasal drip and then changed it to seasonal allergies after the ENT indicated no post nasal drip. Testing said no allergies. Misdiagnosed with Acid Reflux by local GI and thankfully I decided against starting the PPI that was suggested. As a precautionary measure I did and do follow the Acid Reflux Diet to error on the side of caution. I do have a cheat once in a blue moon.
Local pulmonary doctor misdiagnosed me and said " you just have large lungs" that was after his reading the XRay ordered by another doctor that indicated I had emphysema. So I left his office believing what he told me. I had also told him about my needing to clear my throat and was needing to carry a spit cup all the time, he was not concerned. After many visits to my PCP and much weight loss my PCP finally thought, something truly is wrong, and scheduled a C Scan. Result BE, Bronchiectasis. Since my local pulmonologist apparently did not error on the side of caution after reading the XRay report and apparently did not know how to treat me, tell me all I needed to know and do, after I went back to him with the CScan results I took myself up to National Jewish Hospital in Denver.
Glad you are working on getting the answers and help you need.
Barbara
I'm so glad to see that you are being proactive..."I'm reading what I can about airway clearance. Is it OK to start this before I see a doctor? Can I even get the hypertonic saline without an RX? Seems Amazon may not be the recomended resource."
The answers are yes, you can start airway clearance on your own. Here is an long, but excellent explanation:
And yes, you can get hypertonic saline without a prescription. If you have no evidence of infection, 3% might be easier to handle at first, but 7% is also available. And yes, in a pinch, I have purchased the Naveh and Base Laboratories Brands from Amazon - these are the same ones dispensed at my Walgreens, so I figured they were safe.
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2 ReactionsAlso, the AerobiKa and nebulizer can be purchased on line . I use the ombra nebulizer and am happy with it. The price’s vary so shop around. No prescription needed.
Great information..Thank you.
So glad I found this forum.