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Feeling Desperate about Cough and Doctor
Sorry this is so long, but just writing it all out has been therapeutic.
I had a chronic recalcitrant cough for decades which no one could diagnose even after playing the Specialist roulette game several times over the past 5 years. ( ENT, GI, Asthma/Allergy, at one point they said it was "neurogenic" and threw up their hands -Pulmonology said I was great because the X-rays & breathing tests came back beyond healthy and so no one would do any CT scans!) The one thing that helped for 18 months was a Botox shot done by ENT above my vocal chords for the " reactive airway". MAGIC! But it did fade and we have not been able to replicate it. It was the ENT who spotted the stuff coming UP from my lungs while I was scoped for his procedure and he said to go back and demand a closer look by pulmonary.
So guess what, did they do a fresh CT? No! The pulmo got hold of an OLD chest CT from 2020 when I fell and bruised some ribs and suddenly decided I have BE.
She ripped my codeine contract (obtained through my GP exactly to control night time coughing which no one could diagnose) out of my hands. Enter true misery. I do understand that I should be happy to get the stuff out of my lungs, but I do that all day anyway!
At this point I nebulize a 3% saline, huff cough and wind up drained, exhausted and teary and oh so pathetic. I do it daily, sometimes twice when tight & can't cough up what I know is trying to choke me. Bedtime is a misery, I sleep on an incline, but even if I neb at bedtime I am awake every hour spitting into hankies between cough drops. UNLESS I go against all recommendations and sneak a few Canadian 222's with 8mg codeine.
Just started on 250 mg of Azithromycin 3X a week...but no promises that it will affect the Continual Cough. If I tolerate it for 2 months we'll up it to 500mg. My pulmo doc also refuses to do a repeat CT, no matter how many times I ask.
What I am struggling with right now is that I cannot get more than an hour of uninterrupted sleep at a time, night after night, unless I break the cardinal rule and suppress the cough somehow. My justification is that I am also hurking up a 1/4 cup of thick white frothy stuff all day anyway.
I feel desperate, depressed and exhausted. ANy words of wisdom would be so appreciated.
Rebecca
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Rebecca, With the exception of coughing I know your story. The lack of sleep is wearing me down. Your summation, "I feel desperate, depressed and exhausted." For me it's spot on. I get low dosage CT scans every 6 months, a follow up to cancer and a lobectomy LUL in 2018. It's the problems that latter showed on the CT scans unrelated to cancer, MAC.
I'm 85, the idea to give up the fight, sit back and wait my time out looms over me.
There are no magic wands.
Don
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1 ReactionHave you tried azelastine nasal (over the counter now) twice a day to see if that helps the night time coughing at all? It takes a few days to build up but it did seem to help me somewhat. It's for allergies and vasomotor (sp?) rhinitis. I get more coughing and mucus when smells bother me...just a thought. Hairspray sends me into an all day coughing up stuff event for example.
I am so sorry you are going through this Rebecca. Is there a possibility of changing your pulmonary Dr. . Doesn't sound like she is willing to work with you. I pray you find the help you need.
@rebecross Welcome to Mayo Connect, I am sure you will find some helpful suggestions for dealing with this from our members.
You have a diagnosis of bronchiectasis, which means your airways are not efficient at removing mucus and irritants deep in your lungs so pockets of infection form. You mentioned that you are on Azithromycin 3 times a week, but not whether you had had a sputum test to determine what is infecting your lungs. There could be any number of infectious agents at work there, and not all of them will respond to that drug. The proper test is called a sputum culture, where they grow out the sample on special culture plates in the lab for 6-8 weeks, then test different antibiotics on the sample to see which are most effective.
It is very important for people with bronchiectasis to know the "bug" and treat it with the correct medications to prevent further lung damage. Also, treating with just one medication can cause antibiotic resistance in the germs.
Have you had a sputum test to see what is infecting your lungs?
Sue
Thanks for writing Don, I sure wish I had that wand for both of us! Rebecca
As a matter of fact that was the other new thing my Pulmo had me start ! ALong with my usual Rhinocort once a day. I do feel dryer in the head at night, so I am hoping this will help overall!
Thanks so much for your thoughtful idea!! Rebecca
I have seriously considered this idea, but because I am with Kaiser Permanente, I cannot get a second opinion within the system without "terminating" my relationship with the first doctor.
So for now, I will out a few more of her newer ideas before I make that jump ( nasal sprays & Azithromycin) and then decide in a few months. I could also just go and private pay at another clinic.
Several people have mentioned in posts that they have prescribed narcotic cough syrup for strictly occasional use and I have not given up on that concept. That may be what drives me to a new provider. Thanks for your encouragement and prayers!
Rebecca
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1 ReactionHi Sue,
Yes we did a sputum test, and it came up negative for other infections, after the 8 week wait for things to grow. Thanks for this reminder!
When Azithro came up I was insistent that she explain why I'd be given this if I had no active infections ( my sputum is always clear or white) and was told that this particular drug can change the "immuno-environment in the lungs" and proved a long term benefit and MAYBE reduce the coughing. We;re still experiment with dosage at this point, as I could not tolerate the initial 500 mg. We'll see!
Thanks again! Rebecca
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