COPD Group: Introduce yourself and connect with others

Welcome to the COPD group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with COPD, emphysema and chronic bronchitis or caring for someone with COPD. Let’s learn from each other and share stories about living with COPD, coping with the challenges, and exchange tips.
Feel free to browse the topics or start a new one.

Pull up a chair. Let’s start with introductions.

What's your COPD story? What helps you?

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

Profile picture for stevec @stevec

I was diagnosed with mild COPD a few years ago. The doctor said 'Here's a Rx for an inhaler. Use it when you need to." That's it. When I asked what caused it, 'Well you used to smoke so most likely that's why'. I feel like there should be more. After dealing with this for this time with little to no assistance to teach me about it, I'm going to request to see a pulmonologist cause I wonder if there are treatments for this. I understand it isn't curable.
This past Sunday I had my wife take me to the ER with a really bad chest cold that was causing me to cough so hard I'd pass out. My wife said my eyes would roll up and my face turn almost purple. My feet shake and hands move without purpose. As awareness comes back I'm very confused about what is happening, where I am. Everything visually is all stars. After a few seconds I regain enough to understand what happened.
This also happened last winter while vacationing in Texas for a month. Then the diagnosis was pneumonia. This year they said the ct-scan did not show pneumonia but the Dr was surprised as he thought it would after listening to me breath.
Are these normal reactions to COPD? Sometimes just bending over to tie my shoes leaves me panting ridiculously. They do EKG's on my heart and it shows all is fine. Stress tests, the same. My O2 levels always show 94-96. I'm excited to have found this website and hope to begin learning things about COPD, what can be done to help or maybe when I should be looking for more answers. Thank you for listening .

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@stevec Sounds like you had a bronchial spasm. I have COPD and once in a while I get those. They are quite debilitating. The only relief I have is levalbuterol nebulizer. The rescue inhaler and the others do not help in that situation. I also take a 10mg dose of prednisone to keep from getting more spasms. The spasms are scary-good luck!

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Hi Group,
I am "Hub" from Florida diagnosed with COPD several years ago. Taking Wixela Inhub inhaler along with Spiriva Respimat, Xopenex rescue inhaler, and Levalbuterol nebulizer. COPD results of Covid pneumonia which severely scarred my lungs. Also started taking 10mg of prednisone for the bronchial spasms. Found the nebulizer is the only thing that helps when I am in trouble. Trying to wean off of prednisone. I am also on 3 units of oxygen at home with the oxygen generator and Inogen one portable generator. I don't need oxygen when sitting up resting.
This is year 2. I also have a bed that adjusts-a real life saver as mornings are tough with all the congestion. Taking 12 hour Mucinex before bed helps. Still play occasional 9 holes of golf from a cart. Done with tennis-just a chore to walk far as legs get wobbly. Doctors all say my tests indicate no change but I feel weaker by the day. I also have congestive heart failure and stage 3 kidney disease-mostly from covid., again doctors say no change! I like pool exercise and treadmill and elliptical in gym. I have a battery assist recumbent tricycle and a stand up walker that I use. I'm 82 and could use any advice you have.

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Bob in Phila here. I was diagnosed with COPD and was hospitalized about 3 weeks ago for a week for COPD exacerbated by pneumonia. I had pneumonia twice. A relentless cold in January. Pneumonia diagnosed then. 2 antibiotics prescribed.
Still was coughing and then a steroid. All through February and March this was repeated.
By April 7th I could not breath. Couldn't exhale and couldn't inhale. I though I was going to die. I thought this must be what it's like to drown.
My wife called the rescue squad ( I was still reluctant to go to the hospital ) In they came and gave me oxygen right away and off we went. Very scary! I was in for a week. The nurses and doctors were SO helpful and so smart.
So far I use Trelegy in the morning and the nebulizer every 4 -5 hours. I have rescue things everywhere. I did have a bad night 2 nights after returning home. I got a bit scared again. Got out of bed.4:00am Hooked up the nebulizer. Things and me, calmed down and went back to sleep. I am about to get into a pulmonary rehab. Whatever I have to do to stay healthy and keep the COPD away or at bay.
I look forward to learning all I can about COPD and staying healthy.
Damn cigarettes! I was a heavy smoker but stopped 36 years ago.

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Profile picture for jerdonus @jerdonus

Hi Group,
I am "Hub" from Florida diagnosed with COPD several years ago. Taking Wixela Inhub inhaler along with Spiriva Respimat, Xopenex rescue inhaler, and Levalbuterol nebulizer. COPD results of Covid pneumonia which severely scarred my lungs. Also started taking 10mg of prednisone for the bronchial spasms. Found the nebulizer is the only thing that helps when I am in trouble. Trying to wean off of prednisone. I am also on 3 units of oxygen at home with the oxygen generator and Inogen one portable generator. I don't need oxygen when sitting up resting.
This is year 2. I also have a bed that adjusts-a real life saver as mornings are tough with all the congestion. Taking 12 hour Mucinex before bed helps. Still play occasional 9 holes of golf from a cart. Done with tennis-just a chore to walk far as legs get wobbly. Doctors all say my tests indicate no change but I feel weaker by the day. I also have congestive heart failure and stage 3 kidney disease-mostly from covid., again doctors say no change! I like pool exercise and treadmill and elliptical in gym. I have a battery assist recumbent tricycle and a stand up walker that I use. I'm 82 and could use any advice you have.

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@jerdonus Never (before) heard of Xopenex. Thanks for the info! Keep using your legs as much as you can. Do you do "sit-to-stand" exercises?

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Profile picture for capnjack @capnjack

@jerdonus Never (before) heard of Xopenex. Thanks for the info! Keep using your legs as much as you can. Do you do "sit-to-stand" exercises?

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@capnjack I ride my bike, and walk everyday-go to the gym 3 times a week-elliptical and treadmill. also weights. Doing all the exercises they di with me at pulmonary rehab

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Profile picture for beflat10r @beflat10r

Bob in Phila here. I was diagnosed with COPD and was hospitalized about 3 weeks ago for a week for COPD exacerbated by pneumonia. I had pneumonia twice. A relentless cold in January. Pneumonia diagnosed then. 2 antibiotics prescribed.
Still was coughing and then a steroid. All through February and March this was repeated.
By April 7th I could not breath. Couldn't exhale and couldn't inhale. I though I was going to die. I thought this must be what it's like to drown.
My wife called the rescue squad ( I was still reluctant to go to the hospital ) In they came and gave me oxygen right away and off we went. Very scary! I was in for a week. The nurses and doctors were SO helpful and so smart.
So far I use Trelegy in the morning and the nebulizer every 4 -5 hours. I have rescue things everywhere. I did have a bad night 2 nights after returning home. I got a bit scared again. Got out of bed.4:00am Hooked up the nebulizer. Things and me, calmed down and went back to sleep. I am about to get into a pulmonary rehab. Whatever I have to do to stay healthy and keep the COPD away or at bay.
I look forward to learning all I can about COPD and staying healthy.
Damn cigarettes! I was a heavy smoker but stopped 36 years ago.

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@beflat10r
What nebulizer solution do you use? I use Ipratropium/albuteral. Thanks

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I have COPD. I am scared and have a nebulizer. Diagnosed 6 months ago. Don’t know what to do! Trying to exercise and walk every day, but I get very tired, and yes I’m scared. Also need hiatel hernia surgery.

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Hello from Michigan. I have COPD. I do not know how to cope with it!! I’m here to learn and try to cope!

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Profile picture for tjphillipp @tjphillipp

@beflat10r
What nebulizer solution do you use? I use Ipratropium/albuteral. Thanks

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@tjphillipp Levalbuterol

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