Newly Diagnosed COPD: Medication Problems & Other Concerns

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First of all, thank you to all the forum participants for honest questions/answers. As a newly-diagnosed person w/COPD, it is very helpful.

I would appreciate any guidance/suggestions/advice for the questions below: (sorry to be so long-winded, but this saga has been hell so far):

1) After 7 years of constant coughing & going to 8 different doctors (family physicians, ENTs, allergists, etc.) & everyone telling me I had “bad allergies” & "severe post-nasal drip"–a recent chest x-ray, (Aug. 2017) stated that I had early COPD (first they said emphysema; now they say chronic bronchitis).

2) Truth is, I’ve NEVER smoked in my life–but was around secondhand smoke daily for the first 35 years of my life (I’m 55 now). Each time my oxygen levels are tested, I have scored 97%. (I’m not super athletic, but I walk 5 miles per day, do free weights, etc.)

3) I was tested for the Alpha-1 genetic disorder–but that came back negative.

4) So, in addition to Flonase (sp?) & allergy medications, the nurse practitioner in the pulmonary office prescribed Dulera…I took it twice daily as prescribed. Earlier this week, my acupuncturist (who has been extremely helpful) said that I have developed irregular heart rhythms/heartbeats & recommended seeing a cardiologist ASAP. Have any of you experienced this issue w/Dulera? **I have stopped taking it--and never found that it was helpful when i took it for 2 solid months).

5) Also, do any of you have voice loss? This has been going on w/me for over 7 years, along w/the constant coughing…(I am in front of people teaching, usually 7-8 hours a day, so this has been especially troublesome)

6) So, now, the new pulmonary specialist (truth is, I’ve only seen the nurse practitioner–seeing the actual doctor is obviously impossible in this city w/not so great medical care!) has recommended a CT scan to rule out tumors, etc.

7) Again, I apologize for being so self-absorbed, but I keep thinking that I may have been misdiagnosed with COPD & perhaps it could be a lung tumor–or something else. If anyone has any similar experiences w/being misdiagnosed, I would appreciate any guidance.

Thank You!

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  • Posted

    I will answer as best I can;-  I am in the UK so procedures may vary depending which country you reside in.

    1.  emphysema and chronic bronchitis come under the banner of COPD, some people with COPD have both emphysema and chronic bronchitis.  A spirometry test result is one of the usual tests preliminary to Xray and for a more accurate diagnosis a CT scan.

    2.  Your oxygen levels are good and you are walking 5 miles a day - excellent (many with COPD wouldn't be able to sustain that daily). Lung damage can occur through passive smoking and any number of other air born irritants, builders dust, printers fluids, paint sprays, excessive use of aerosols on a daily basis. etc etc

    3.  If the Alpha 1 test came back negative then that is one lung issue eliminated.  Consider if anyone else in your family has been diagnosed with Alpha 1 if they have been ask for a re test.

    4.  If medication is not working for you, you should go back to your doctor.  Incidently what symptoms do you have? (apart from coughing and voice loss)

    f you are very mild COPD you may not need medications, it all depends on the symptoms you are experiencing.  Some medications can cause heart irregularities, In UK if you have a diagnosis of COPD its usual to have cardiac checks too, especially if under a respiratory specialist.  

    5.  Medications can interfere with the voice box, its why the medicines normally say rinse and gargle after use, particularly with steroid inhalers.  I have experienced this myself, mainly with the steroid inhaler.  You say you have had this for 7 years along with the coughing.  So this would have been going on before you used inhalers?  With these 2 symptoms going on for so long, you need to find out the cause, a specialising respiratory consultant and further ENT investigations (recent ones)

    6. The CT scan will give a precise and clear indication of what is going on in the lungs and indicate which lung problem you may have if any.

    7.  I've no experience of being misdiagnosed myself,  you may not have COPD, there are many other lung problems that could be the problem, or it may not be a lung problem at all, only specialist investigation can indicate what the problem is.  Not sure why you think it may be a lung tumor, consider it may not be that at all.

    Good luck with your CT scan results and getting to the bottom of the cause of your symptoms.

    Best wishes V

     

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    • Posted

      Hi V, 

      Thank you so much for taking the time to answer so many questions & my concerns. I appreciate all of the details!

      #4) My main symptoms are the chronic cough & voice loss. Also seem to have a runny nose/post nasal drip going on more now than ever. Have been short of breath--maybe 3 times in the last 3 or 4 months (happened after some presentations/teaching workshops--have not yet experienced shortness of breath during my morning walks, thank goodness).

      #7) Why I fear lung tumors? Truth is, my late mother died from lung cancer (heavy smoker for 50 years)--so that has been in the back of my mind. Also, I have known 2 acquaintances (one 50, the other only 31) who died of lung cancer & were never smokers.  

      Thanks again for your guidance!

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    • Posted

      Your voice problems may arise from the post nasal drip. It's going somewhere and requires clearance. I've heard of people humming for 10-15 minutes daily to help with this.

      Do you do any vocal markups before you begin your work day? The vocal cords are muscles and like all the rest of our muscles, they need proper stretching & exercise. I narrated talking books for a long time & did voiceover work occasionally. At least every couple of years a pro would come do a workshop with us, on proper speaking/singing technique (which very few people use) and on how to keep mouth, tongue, cords limber. Too hard to describe but I'm certain that there must be vide9s on YouTube.

      Vee's correct, some lung meds affect our vocal cords, but you had a problem already. As she said, some lung meds cause palpitations etc. With some of them, the effect goes away over time but with others it doesn't. The worst med I ever took in terms of negative vocal impact was lipitor. Nightmare drug for me! So other meds can also impact the vocal cords

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    • Posted

      Hi again newcopdss

      4.  post nasal drip is a health issue on its own.  You are only short of breath 3 times in the last 3 or 4 months.  Most people with COPD are short of breath daily.  

      It doesn't sound like you have copd in my view but then I am not a medical professional, for sure a CT scan will indicate precisely what is going on in the lungs if anything.  If it comes back clear you can be pretty sure there isn't any lung problem.

      7) symptoms of a lung tumor are far worse than the symptoms you are experiencing but as mentioned above a CT scan will show any irregularities.  Your health issues in life won't necessarily mimic your mother's or 2 acquaintances.

      Best wishes for good CT scan results and to getting to the bottom of the cause of your 7 year long coughing a voice loss.  

      V

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    • Posted

      Thanks so much for this vocal warm-up suggestion! I've known a few professional singers who do exactly what you have described before any performance--but I never really thought about doing this as I prepare to teach & present info to a bunch of college students...It makes perfect sense!

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  • Posted

    Your post is interesting, I can't offer any helpful advice as I'm only a learner having only been told I have COPD in the last couple of months.  For 2 years I have been coughing (sometimes productive, sometimes not.  It's a deep cough and I often have to clear my throat before I can talk again.  My voice is a little weak and croaky.  Guess this is because of COPD. In that 2 years I have seen a lung specialist and an ENT specialist without results. confused

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    • Posted

      You might want to ask your docs/their nurses if you would benefit from mucus thinners and/or any of the nebulizer treatments & clearance methods or devices to help resolve the deep cough. Of course it depends on the person & source of the cough but it never hurts to ask.

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    • Posted

      oh you have already seen a lung specialist and ENT without results?   Does that mean the lung specialist and ENT specialist found the all tests showed no lung damage or airway problem?
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    • Posted

      If it was the lung specialist who diagnosed COPD you can be pretty sure that is what you have.
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    • Posted

      Lung specialist found nothing, sent me for a sleep apnoea test which showed I have that.  ENT spec. found nothing.  My GP dialogised me on a spirometry test, no other test which is why I doubted it.  (remember I have never smoked)

      ?I get breathless doing hardly anything.  My Dr sent me for another spirometry test 2 weeks ago, I went on Thursday, the part connected to the computer that you breath into didn't work so I went back the following day - still didn't work so I waited a week for another appointment which was Friday 5th..  Silly me I forgot and used my puffers so test had to be cancelled so I now have to wait until tomorrow for my test.  In the meantime I continue to be puffed out.  Maybe puffed out is not the same as COPD.  I have also had an echocardiogram, my heart is fine.  It's all very strange but maybe tomorrow will have an answer. lol

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    • Posted

      Also had lung x ray - nothing.  It's strange, makes me wonder if I imagine things.  Probably really just asthma playing up after being under control since I was 7. (now 74)

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  • Posted

    First of all YOU SHOULD DEMAND to see a doctor.  Second spend time on the internet doing your own research.  Third of all talk to others in these kinds of forums. Forth if a med has bad effects STOP USING since I believe we have 30 or 40 defferrnt breathing meds snd they are all hit and miss and that’s why you should try different ones if one doesn’t work.  
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    • Posted

      Just good to keep in mind that the 1st & 2d names of Dr. Google are "Quack" and "Quack." Use reputable sites like this one.

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    • Posted

      Google is a search engine and notorious, infamous even, for terrifying everyone into thinking that things like hang nails are deadly. I finally found a disease which Google think a is less dangerous & less intetesting than watching low-VOC paint dry on a wall, from 50 feet away: bronchiectasis. How we all wish that were true of bronchiectasis!

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