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Posts (6)

Mon, Jan 27 11:03am · Bronchiectasis: New Diagnosis in MAC & Bronchiectasis

Question: How often should I have CT scans? Had initial x-ray followed by 2 CT scans 3 months apart. Next is to be scheduled in 9 months. It has been 5 months.

Had episode woke up Gasping for breath- had turned over in sleep to ‘bad side’. Couldn’t get enough air then dizzy, sharp pain chest & back, tingling right arm. Thought heart attack. Saw cardiologist, heart fine. Pulmonologist said hyperventilating & something to do with carbon dioxide can cause tingling arm & dizziness & said maybe do x-ray or another CT scan. Since propped up pillows no repeat & can sleep one side & back. Do have some pain in chest when I wake up & take deep breaths at first.

Since I feel better wondering if I should wait with CT scan. It’s a lot of radiation.

How often do people on this forum have scans.

Sorry for long posts- new & have so many questions. 💞

Mon, Jan 27 10:39am · Bronchiectasis: New Diagnosis in MAC & Bronchiectasis

I’m pretty much a side sleeper. In past weeks I’ve piled up pillows to prop myself up & can now also sleep on back – much better! Thank you for tip on wedge- will definitely look into it!

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Sun, Jan 26 11:08pm · Bronchiectasis: New Diagnosis in MAC & Bronchiectasis

Thank you so much for the information. I’m grateful.
No, I haven’t been tested for infection. My bought with pneumonia & severe bronchitis spring 2018 & 2019 were treated with antibiotics (prednisone & steroid inhalers) but there was no testing involved. Decades ago I worked in a lab and it was routine to run an antibiotic sensitivity tests when infections were detected. In my own experience in the past plus decade, my infections for whatever were not even identified, let alone determine what antibiotics were effective. It’s a here try this- type of treatment. And I have severe stomach & diarrhea from them (I have IBSD & microcellular colitis which doesn’t help!). At my next visit I will definitely ask my pulmonologist.
Thank you again.

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Sun, Jan 26 7:27pm · Bronchiectasis: New Diagnosis in MAC & Bronchiectasis

Sorry – diagnosed May 2019. Haven’t figured out how to edit 1st post.

Sun, Jan 26 6:27pm · Bronchiectasis: New Diagnosis in MAC & Bronchiectasis

Sue, thank you so much for information. I’m new to this site as of today! I have been waking with acid reflux a couple of nights a week, chew a Pepsid & can usually get back to sleep. Is GERD one of the symptoms of this disease? I can understand it making it worse by inhaling into lungs. Do others with Bronchiecstasis have this problem? I thought it might be from waking & having to cough.
Thanks again. Knowledge is powerful thing 🙏💞

Sun, Jan 26 6:11pm · Bronchiectasis: New Diagnosis in MAC & Bronchiectasis

Dear People
So glad to find you & this site. This is my first post. I was diagnosed in May of 2018. I had had bronchitis 2 years in a row & x-ray taken in urgent care checking for pneumonia found interstitial reticulonodular lung disease which I looked up on web – scary! Saw wonderful pulmonologist (hadda fight for it with My Med ins). Have had 2 CT scans that show Bronchiecstesis. Turns out it showed up on previous x-rays from when I had pneumonia around 2011. Nobody told me.
I’m a non-smoker so who knows? While inflammation some areas of lungs better, some a bit worse. So far, progression is slow. The doc says the bronchiectasis will stay with me. Relatively mild.
Hard to cough stuff up, could only sleep on left side till recently. From reading here & elsewhere online I have learned that physiotherapist can teach one how to clear lungs – there are some YouTube videos as well. I’m going to ask for referral next visit. Also have found that propping myself up on a bunch of pillows at night has enabled me to sleep on my back. Still can’t sleep on right side without pain & coughing- but really helps. Even the pulmonary doc seemed baffled by this. I’ve learned from reading others’ experiences that this is common!!
I am also afraid of being in crowds, getting sick again. I got a pneumonia vaccine & will get booster next year. Also got the super duper senior flu shot. No guarantees & no vaccine for bronchitis.
I exercise most mornings at home & am trying to stay hydrated. I live in N Calif & smoke from fires was awful. Tho stayed in, it seeped in. Dreading another fire season.
So this is my story so far.
Bless you all for your posts – I don’t feel so alone & scared. I’m also so sorry for your suffering. Hoping mutual support here will help us all.