1. < COPD: Chronic obstructive pulmonary disease
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Just found out I have COPD and I'm pretty freaked out

Posted by vcecere @vcecere, Aug 28 12:00am

Hi, I just found out today that I have COPD and I'm pretty freaked out. The pulmonologist said I have moderate COPD and a little asthma. I went to the pulmonologist because they found a lung nodule during a CT scan for another issue. I had a PET scan and they said the nodule wasn't cancerous. Anyway, the pulmonologist had me do a breathing test in June and I just had my follow up appointment for that today and she told me I have COPD. She said it doesn't get better only gets worse but can be managed with medication she prescribed an inhaler. I just want to know if there's anyone on here who has had COPD for a long time, what things other than meds have helped you cope with it ? I'm just trying to get a handle on this and not be so scared.

Interested in more discussions like this? Go to the COPD: Chronic obstructive pulmonary disease Support Group.

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jlk12 | @jlk12 | 2 days ago

I posted earlier, but wanted to add on to this conversation. Make sure your Pulmonologist okays the OTC medications you might consider taking. I have a rescue pack with prednisone and antibiotics, in the event I get an exacerbation.

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nansea2 | @nansea2 | 2 days ago
In reply to @jlk12 "I posted earlier, but wanted to add on to this conversation. Make sure your Pulmonologist okays..." + (show)
Profile picture for jlk12 @jlk12

I posted earlier, but wanted to add on to this conversation. Make sure your Pulmonologist okays the OTC medications you might consider taking. I have a rescue pack with prednisone and antibiotics, in the event I get an exacerbation.

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@jlk12 I have prednisone too as a backup but don't have antibiotics. How were you able to get extra?? Thank you.

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jlk12 | @jlk12 | 2 days ago
In reply to @nansea2 "@jlk12 I have prednisone too as a backup but don't have antibiotics. How were you able..." + (show)
Profile picture for nansea2 @nansea2

@jlk12 I have prednisone too as a backup but don't have antibiotics. How were you able to get extra?? Thank you.

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@nansea2 I travel frequently and I especially love cruising. Cruise ships can be a germ fest so my Pulmonologist gave me the antibiotics, along with the prednisone for emergency use. I don’t take them unless I absolutely need them.

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hicopd | @hicopd | 2 days ago

I was diagnosed with COPD 26 years ago--moderate to severe emphysema from no known cause. I'm still living a pretty good life, traveling, volunteering (running my nonprofit & serving on a nonprofit Board), dining out, and spending time with friends & loved ones. I use my inhalers because they allow me to have a pretty good quality of life and keep me from coughing all the time. I recently have had a biologic added to my inhaler and it helps reduce the frequency & severity of my flare-ups (which I used to have 1-6x/year).

All in all, I'd say that if you work with your healthcare team--MDs, APRNs and pharmacist, you can live a pretty good life with COPD. Talk with your healthcare teams about your concerns with the inhalers and which ones might have fewer side effects for you. Also, get all your recommended vaccinations so that you are less likely to get severe illnesses, which will make your breathing much worse. Good luck!

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Mary | @mjb24 | 13 hours ago
In reply to @narelled23 "I believe also that exercise is the key...and probably nebulising hypertonic saline/airway clearance for mucus clearance,..." + (show)
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I believe also that exercise is the key...and probably nebulising hypertonic saline/airway clearance for mucus clearance, although I have reduced that lately because i seemed to be in a reactive airways loop.

I was diagnosed with Bronchiectasis and small airway disease over 10 years ago and recently the small airway disease was termed at Moderate/Mild COPD. I was prescribed a LAMA/LABA inhaler which kept me awake at night, so I dropped that...was then given Spiriva...however I have not taken it regularly, partly because of (maybe unreasonable) fear of side effects, and because I generally now don't feel the need.

However, I am wondering if I am causing potential damage or progression by not taking the inhalers. What do people think? I have taken many over the years and Symbicort for years without any apparent effect, Spiriva for a couple of years but stopped because of my concern for the drying of mucus and potential for plugging. Didn't notice too much difference off it.

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@narelled23 I understand your concern with side effects. I do not like taking medications, supplements, vitamins or anything else. However, sometimes it becomes necessary. COPD can not be cured but progression can be slowed and from what my doctors tell me and what I have researched, the right inhaler, along with exercise and a healthy diet is what will help slow the progression. I would recommend you do your research on the various inhaler medications and talk to your doctor about your concerns. I was originally on Trelegy Ellipta which is 3 meds including fluticasone which is a corticosteroid. I talked to my pulmonologist about my concerns with the steroid and she agreed to switch me to Anoro which is just a LABA/LAMA. I did agree to add a corticosteroid in the future if it really became necessary.

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narelled23 | @narelled23 | 9 hours ago
In reply to @mjb24 "@narelled23 I understand your concern with side effects. I do not like taking medications, supplements, vitamins..." + (show)
Profile picture for Mary @mjb24

@narelled23 I understand your concern with side effects. I do not like taking medications, supplements, vitamins or anything else. However, sometimes it becomes necessary. COPD can not be cured but progression can be slowed and from what my doctors tell me and what I have researched, the right inhaler, along with exercise and a healthy diet is what will help slow the progression. I would recommend you do your research on the various inhaler medications and talk to your doctor about your concerns. I was originally on Trelegy Ellipta which is 3 meds including fluticasone which is a corticosteroid. I talked to my pulmonologist about my concerns with the steroid and she agreed to switch me to Anoro which is just a LABA/LAMA. I did agree to add a corticosteroid in the future if it really became necessary.

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@mjb24

Thank you, Mary, for your response.

I have been diagnosed with bronchiectasis for 10+ years and more recently the 'small airways disease' became COPD. The specialist I saw earlier this year did put me on Anoro...however it interfered with my sleep and so I stopped it. I also saw no obvious benefit in taking it. (At the time I had been suffering shortness of breath which appeared to respond to an antihistimine)
After discussions again he agreed that I use Spiriva, if I found it necessary. I have not had the shortness of breath again and consequently I am not using any inhaler, apart from albuterol prior to nebbing or the occasional Symbicort if I feel I need something with a steroid.

I am hoping I am not opening myself up to deterioration of my lungs by not regularly using inhalers.

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