My Story: Severe COPD

By fecydb

1 min read

My story is this. Recently diagnosed last year with COPD / emphysema. Smoker for 30 years. So I was mild/ moderate. Now at severe 9 months later. It's hard to breathe at times. Muscles in my back and sides hurt. Shoulder has pain. Always tired. Was depressed by this news. Smell of Ben gay put me into where my chest was so tight I couldn't breathe so had to have antibiotics and prednisone. So on Monday after wallowing in sadness for a week or so. I started walking. Sure at about 1/10 of a mile I can't breathe and my oxygen level is down to 85 but I keep on. I can do that mile in 25 min which is good bc with me struggling to breathe it's a wonder. I have Advair and Spiriva. With pro air and nebulizer which I try not to use. I don't know if I will build up endurance I don't know what is next. I am a little afraid no oxygen yet although I'm afraid to ask when I try to be as active as possible I have a 9 year old grand daughter I am raising I do get tired a lot and don't feel like doing much at all. I read about stem cell but does that really work ? What are some techniques to use when you are having anxiety about not being able to breathe

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jennl Member
Hi Lorie- Thank you so much for sharing your story with us! You're certainly not alone in having anxiety about not being able to breathe! While you may get more feedback from the community on personal experience, I thought the following articles might be useful... Here are three article related to breathing strategies: <a href='https://copd.net/living-with-copd/breathing-strategies' target='_blank'>https://copd.net/living-with-copd/breathing-strategies</a>, <a href='https://copd.net/living/dont-breathe-in-breathe-out' target='_blank'>https://copd.net/living/dont-breathe-in-breathe-out</a>, and <a href='https://copd.net/guest-expert/pursed-lips-are-not-just-for-kissing' target='_blank'>https://copd.net/guest-expert/pursed-lips-are-not-just-for-kissing</a>. Additionally, these articles on dealing with the mental and emotional impact of COPD: <a href='https://copd.net/living-with-copd/pulmonary-rehab/coping' target='_blank'>https://copd.net/living-with-copd/pulmonary-rehab/coping</a>. I truly hope this is helpful. Please do feel free to come by any time for information or support! Warmly, Jenn (Community Manager)
1. Leon Lebowitz, RRT Member
 Hi Lorie and welcome. I see that Heather and Jenn have provided some good feedback. To that I can add there is no reason to try to avoid the use of your nebulizer, especially if it provides you with some relief. As you get your breathing issues under control you may be able to cut back on some medications, but that should be done in concert with your private health care provider. You may be a perfect candidate for the use of supplemental oxygen - make certain to consult with your physician. Oxygen can provide you with a great deal of relief when indicated. You may find this reading material on oxygen helpful: <a href='https://copd.net/treatment/medication-overview/oxygen-therapy' target='_blank'>https://copd.net/treatment/medication-overview/oxygen-therapy</a> We welcome your continued participation in our community. Regards, Leon (site moderator)
t2ca4n Member
Hi Lorie Awesome on the walking! Keep it up 😀 Don't be afraid to ask to be tested for Oxygen requirement. I have been on it since 2011. Have you been checked by your Doctor (simple blood test) for A1AD Alpha 1 Antitrypsin Deficiency? I was diagnosed with COPD in 2007, after about one year I was advised by someone to ensure I was checked out for A1AD, which I have. There are additional treatments if you do have it. I hope mentioning the genetic form of COPD (A1AD) is ok. New to the group, Heather
1. t2ca4n Member
 There is a very good write up here - COPD: Now What? By Janet Plank—September 18, 2015. I don't know how to link this story within this group.
2. jennl Member
 Hi Heather! Thanks so much for your comments! Here is the link to Janet's article, "COPD: Now What?" - <a href='https://copd.net/living/now-what' target='_blank'>https://copd.net/living/now-what</a> . Thanks so much for sharing your experience here! We're glad you found our community! Best, Jenn (Community Manager)
gl9cmb Member
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1. gl9cmb Member
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gl9cmb Member
I don't type fast. Ignore the I'm. Sorry. I'm stage 4, have been for year n half. Still not believing I did this to myself. . Not looking forward to winter. It's the worst! But, I'm still here. So, God's plan for me is still unknown. Will talk later. Have a great night/morning.
1. jennl Member
 Thank you so much for joining us here, con-juan! Please do feel free to come by any time - there are many people here who really get how you're feeling. We welcome you! Best, Jenn (Community Manager)
fecydb Member
I was tested for that anti-1. I will just abbreviate. It was normal. Since writing this I have gotten the oxygen 24/7. I kept telling the dr I was sick. I had so much pressure and pain in my chest u was nauseated dizzy. With the oxygen I feel 10x better. I do hope to get off during the day. I have sleep study coming up suspected sleep Apena. My goal is to only need at night. If I can't then I can't. I will be grateful either way I met this lady today in a store who said to me I was lucky for what I still can do and the things in my life because some people have it worse. So I'm hugging my girl tonight and then going to sleep with my soul mate and I thank god for one more day. And many more.
1. jennl Member
 Thanks so much for keeping us posted on how you're doing, Lorie! We're so glad you're part of this community. Your outlook is beautiful and we really appreciate your sharing your experience and strength with us. So glad to hear you are enjoying your family. <3 Best, Jenn (COPD.net Team)
fa75hk Member
Hi, Lorri, thanks for sharing. I gather from what so many share about the anxiety that the most effective way to deal with it is to practice good breathing technique. The idea of sitting relaxed shoulders and throat, breathe in through the nose for 2 seconds or so, then with parsed lips expel your breath slowly for 4 seconds . Im still trying to learn to do that myself. I have been short of breath for a long time. I have compensated by breathing in my mouth and out my mouth. This is just one tip I find is helpful when I remember. I sure wish you the best . Enjoy the time you get with your grand daughter. Bless you both.

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