Am I in Denial?

By bugs47

1 min read

I was diagnosed with COPD - Mild in 2018. Around same time I was diagnosed with Sleep Apnea - Severe. I was skeptical about Sleep Apnea diagnosis. Testing showed I stopped breathing about 32.6 times per hour.

Treatment didn't make a difference for me

I was given a PAP machine and inhaler. I had heard from others that once they got on PAP machine they felt so much better. I diligently used it for over a year and didn't feel any difference. Inhaler didn't seem to make any difference.

Adjusting my treatment regimen

I moved from Oregon to Nebraska last Sept. and haven't used my PAP since I've been here. Soon I'm going to stop my Spiriva. It is so expensive and I don't feel anything from using it all this time. I was lucky in being pretty healthy my whole life but as the saying goes "sooner or later the sh--t is going to hit the fan." I have diabetes and have had Below Knee Amputation.

As the title of my story says: I'm just in denial. I am going kicking and screaming into my final years.

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Leon Lebowitz, RRT Member
Hi <inline-mention username="bugs47" user-id="4141343"/> , and thanks for sharing your story here with the community! I'm sorry that, even after using the PAP machine (is this a BiPAP machine?), and the Spiriva inhaler, you experienced no improvement at all! Did you ever have an opportunity to discuss this with your physician? And, now that you've relocated to Nebraska (from Oregon), it sounds like you don't have a need for the PAP machine any longer. Have your symptoms (COPD) subsided? Have you connected with a new local physician as yet? I can understand your feelings of 'denial', especially if the therapy has not worked for you. However, my concern is - are you still experiencing any symptoms related to the COPD? How are you feeling nowadays? Please do let us hear back from you when you are able to and have the time. Wishing you well, Leon (site moderator <a href='http://COPD.net' target='_blank'>COPD.net</a>)
chess Member
bugs, thanks for sharing, and you sound a lot like me. COPD and sleep apnea, part time oxygen (particularly at night) , had no luck with inhalers like the one you mentioned and ridiculously expensive----but the CPAP is definitely a necessity if you're not breathing an average of once every two minutes. I was disappointed too 8 years ago after the first couple of nights with a BiPap, expecting to get out of bed turning cartwheels like a 20 year old and feeling great the next morning----and nothing. Didn't feel much at all. But the key is......I didn't feel WORSE either, and hypoxemia and sleep apnea will slowly and eventually be like a wrecking ball to everything from your heart to your brain and just about every other organ if you don't use yours. Like everything else, it's subtle----you don't notice how you're being harmed little by little until the cumulative effect eventually catches up. And like you, I had some romantic notions of going out like a flaming rocket too----but that's just a pipe dream, and the reality of letting things that will slowly take us apart like sleep apnea and COPD without doing everything we can to stop or slow it down isn't pretty. Seriously, friend, use that CPAP even if you don't think it's helping much. Trust me, it is. Good luck, and best wishes!
melaniem Community Admin
<inline-mention username="bugs47" user-id="4141343"/> , I really like (and echo) much of what <inline-mention username="chess" user-id="2414145"/> has said here about the PAP machine that you reference. My mother's experience was more like you said you heard, she felt a difference for sure. My dad also has a bipap machine. I can tell you that he has Alzheimers and lives in Memory Care. They have noticed a difference in how his days go if he uses the machine or if he doesn't- as a result, the machine is a big part of his treatment plan and they monitor him multiple times per night to make sure he is still wearing it. I think that if the sleep study showed you stop breathing that frequently, it would be important to be compliant with using the machine and while the effects may not be apparent, I think as <inline-mention username="chess" user-id="2414145"/> said, they are likely still there and will make a difference over time. The other thing is to make sure that you feel like it is well fitted to you (not uncomfortable or leaking), if you have concerns about this I would discuss it with your doctor- that is the other thing that can help if you aren't getting the results you were hoping for. In terms of your being in "denial," when you said "I am going kicking and screaming into my final years" I also heard (understandable) grief. Not feeling well isn't easy, so I wouldn't say it's just denial, there is possibly some grief there too? Either way, you have our support and we thank you for sharing with us. Warmly, Melanie (team member)
nanadee Member
I was diagnosed probably back in 2004 and was supposed to be using Advair everyday. I was kinda like you and didn't think it was making a difference so I just quit. Well it took years to catch up but I had several severe excerbations and they were really scary. Now for years I take all my medication whether I think they help or not. I haven't had to go back to the hospital for about a year now, but last year I was there 3 or 4 times. I hope you will get back on your PAP machine and Spiriva! 
1. abbyschmidt Community Admin
 <inline-mention username="nanadee" user-id="2426798"/> Thank you so much for sharing your story here to show that no one is alone in their journey. I'm really glad to hear that your medication is reducing your hospital visits. Hopeful that things continue in an upwards direction for you! All the best, Abby (Team Member).
Jackie English Moderator & Contributor
<inline-mention username="bugs47" user-id="4141343"/> Thank you for sharing your story! I'm so sorry that the C-pap and the medicine haven't been working for you. I stopped taking one of my inhalers at one time and sure paid the price. It took a bit but then I could feel the difference in not having the meds. My lung function went from 36% without meds to 45% with. Have you tried a different one or a combination of two different ones? Sometimes we have to keep trying until we find the ones that work. Sometimes physicians can give out samples for you to try first before you would have to get prescribed and pay. Some are much cheaper than others. I just wanted to share what worked for me. There is also some patient assistance that you can get from their website. It's worth looking into. Keep us updated! Best, Jackie (moderator)

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