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COPD and Emphysema

I was diagnosed with both about 11 years ago. I was told it was severe when I asked what stage I was in.

Over the past few years I’ve had pneumonia about 3 times. The last time was this past summer around July. This time it was bad. I had to do a week in rehab to strengthen my legs, I could hardly walk. Here it is December and 5 months later I’m finally starting to get my strength back and feeling more normal.

I have oxygen in my home for 2 years and was using it a lot while I was sick and when I came home. I still use it upon activity and while I sleep. I may not need it to sleep but I just feel better knowing the air is there if I need it.

I have an upstairs and when I first came home from the hospital I slept downstairs and had clothes and other things piled next to my recliner. What a mess – but I just couldn’t manage the stairs.

Just 3 days ago I started going upstairs to sleep and shower, after having a bath at the sink in the downstairs bathroom for months. This is nothing short of heaven, being able to stand/sit in the shower. I have chair in there and wear my oxygen in case I get short of breath. I have to sit down a lot and it takes me quite awhile till I finish but at least I’m doing it.

I’m determined not to let this disease get me down so bad that I can’t or don’t want to get back up. Believe me, I spent a lot of days on my sofa just laying around. My days used to consist of laying around, napping, eating and the next day I’d do it all over again. When I finally thought, “Is this it? Is this how my life is going to be?” Now I make it a point to do something no matter how small. I stand and do dishes now or water plants, or dust furniture. But I still get those days where I just don’t get dressed at all and I just want to lay around all day. There’s always tomorrow.

~Linda~

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Comments

  • Linda author
    1 year ago

    Thank you ‘deebea’ and ‘Barb47’ for your replies. It sure helps knowing others are dealing with the same issues as I am. I need to reach out more cause sometimes I feel so alone.

  • Linda author
    1 year ago

    Thought I’d stop in since I wasn’t on here in quite a few months. It’s been almost a year since I first posted. Even so I read all your replies and comments. Recently I’ve been doing pretty good, no hospital stays. My pulmonary doctor has retired in May and I’ll be seeing a new doctor (woman doctor) at my next appointment. Even though she’ll have my records and all my information, it’ll be like talking to a stranger. I hope I like her as much as I did my last doctor.

  • Lyn Harper, RRT moderator
    1 year ago

    Linhe – I hope you do too! You never know, you may like this new doctor even better! It’s always difficult to change physicians, especially after we’ve had them for many years and trust them. That trust can take a while to build again. I wish you the best and hope it works out even better than you expect.

    Regards,
    Lyn (site moderator)

  • Leon Lebowitz, BA, RRT moderator
    1 year ago

    Hi Linhe (Linda) and thanks for your post. It’s interesting to hear that your first post (here) was over a year but that you do stay aware and frequent our site on a regular basis. Thanks for your support! I agree with Lyn – sometimes changing physicians can be somewhat intimidating but, give the new doc a chance, things might work out to be just as good or, even better! Please check back and let us know how you’re doing.
    All the best,
    Leon (site moderator)

  • Linda author
    1 year ago

    Thank you Lyn, I never gave it a thought that I might like her better. I’ve been with my other doctor for almost 20 years. ~Linda~

  • deebea
    1 year ago

    I felt like that the last time I came home from the hospital. Remember that COPD causes to be very tired, especially following an exacerbation. Gradually we start feeling like doing a bit more each day. Stay with it, it just takes us longer to recover.

  • Barb47
    1 year ago

    I know what you mean Linda no two days are the same. I like you have days when I don’t even get dressed and other days when I get up,dressed and off to the gym. We just have to keep going and enjoy the good days. Take care x

  • Linda author
    2 years ago

    I just thought of something I wanted to add about my doctor visit the other day. Might help someone else. When I told the doc my cannula sometimes makes my nose sore and with the cold I had my nose kept running and then made it hard to breath through so I was taking it in and out all the time. Doc said to try putting the cannula over my mouth (especially at night) while I’m sleeping to keep my nostrils and throat from getting too dry. I’ve tried it but not all night yet. The air feels weird flowing across my tongue. I guess I’d have to get used to it. But at least it gives my nose a rest for awhile. ~Linda~

  • larryrr
    2 years ago

    i use the cannula in my mouth often. pursed lip breathing is hard to do. you can put the cannula in one side of the mouth and pursed lip exhale out the other corner of the mouth.

  • Linda author
    2 years ago

    Thank you larryrr for that tip. ~Linda~

  • Leon Lebowitz, BA, RRT moderator
    2 years ago

    Hi Linhe (LInda) and thanks for updating this situation regarding your discomfort using oxygen and the drying aspect of wearing a nasal cannula.
    As a more viable and practical alternative to what the doctor suggested you may want to try either of two remedies that may be much more practical.

    A simple, basic humidifier can be adapted to your oxygen source (whether it is a cylinder of a concentrator). This provides a very low ‘comfort’ level of humidity and may take care of the drying affect of the oxygen/cannula set up. This can be provided by your equipment supplier.

    Alternatively, you may ask the physician if you can use an oxygen mask at night while you’re sleeping. There are masks that can provide a low concentration of oxygen, and that will depend on the liter flow that is currently prescribed for your nasal cannula. These masks can also be adapted to humidifiers which will keep the air/oxygen your breathing at a more comfortable humidity level.

    Please check back and let us know if this helps to address your concern.
    All the best,
    Leon (site moderator)

  • Leon Lebowitz, BA, RRT moderator
    2 years ago

    That’s good to hear, Linhe. Good luck and be sure to tell us how you’re doing with this level of comfort when using the supplemental oxygen.
    All the best,
    Leon (site moderator)

  • Linda author
    2 years ago

    Thank you Leon, I will definitely call my Med Store and find out about the humidifier hook up to my tubing. I’ve heard of that before. Sounds like a much better idea. ~Linda~

  • Allyson.Ellis moderator
    2 years ago

    Thank you for sharing that insight with the community, Linda! I can imagine that would be a bit of a weird feeling and require some adjusting before it feels comfortable! I’m glad it gives your nose a rest and keeps it from drying out so much. Thank you for keeping us updated on how you are doing! Best, Allyson (site moderator)

  • Linda author
    2 years ago

    Well I made my doctor appointment yesterday and he says I’m doing good. I lost a few pounds, my BP was very good and I was able to walk around the office twice without my oxygen. I talk alot…..I mean alot and my guy (Bill) doesn’t understand how or where I get the breath to talk so much. I can only talk like that when I’m sitting doing nothing. I can’t walk and talk at the same time. My doctor thinks I just have this huge reserve (whatever that means) I guess I have alot of air to expell. It felt really good to get outside. I’m looking forward to Spring. ~Linda~

  • Leon Lebowitz, BA, RRT moderator
    2 years ago

    Hi Linhe (Linda) and thanks for providing us with an update following your visit with the doctor. It’s so good to hear how well you’re doing – keep up the good work!!
    All the best,
    Leon (site moderator)

  • Linda author
    2 years ago

    I had to cancel my last appointment with my pulmonologist cause I was too sick to leave the house so my appointment is for this afternoon. Hopefully I’ll be able to make this one. I get anxiety attacks which I take medicine for but it’s awful how some days I just can’t leave the house. ~Linda~

  • SusanHU
    2 years ago

    That is really hard to deal with @Linhe – but we’re glad to hear you’re going in today. Please let us know how it goes and know we’re here for you! – Susan (COPD.net Team Member)

  • Leon Lebowitz, BA, RRT moderator
    2 years ago

    Hi Linhe – good luck and we’ll look forward to hearing back from you!!
    All the best, Leon (site moderator)

  • Darla S
    2 years ago

    Thank you Linda for your post. It’s posts like yours that that give the rest of us great information and inspiration.

  • Doug48
    2 years ago

    Good for you. Keep it up. We must all push ourselves to the limit everyday. I was born with cerebral palsy and have had to push myself with the help of my parents, medical staff to do everything all of my life. With this experience it has helped me cope with my COPD. I exercise daily, rehab once a week and have gone back to work. All of these thing along with a high protein diet and quitting smoking have made a big difference.
    Merry Christmas and Happy New Year.

  • victorino545
    2 years ago

    Glad your doing better. Your story sounds similar to mine. My last hospitalization took me forever to make come back. I gave stairs to and could not make it up. Thanks my hubby I would give him list what I needed. This disease sure can change your lifestyle. I refuse to give in and keep on pushing forward to but sometimes can be depressing. Hope you stay healthy.

  • Linda author
    2 years ago

    Hi victorino545, sorry it was so hard for you when you came home from hospital. I understand. My companion would bring me things I needed downstairs till I had such an outragious pile of stuff by my recliner, it was taking up floor space. lol……………Keep moving forward though. It’s hard I know but take it slow, you’ll find little improvements along the way that’ll make it all worth while. I get depressed too, right now I’m in a fit of depression…..it’s raining here and my arthritis has kicked in.. That right there will wipe the smile off your face. But I’ll keep pushing on and hopefully by later today I’ll feel better. Hope you have a breath-easy day and a wonderful Christmas. ~Linda~

  • Allyson.Ellis moderator
    2 years ago

    victorino545,it sounds like you have been dealing with a lot! You are so right that this disease does change your lifestyle, which can be a very difficult adjustment. Stairs is a common theme of something many with COPD struggle to do, so know that you are not alone! It’s great you have such a determined outlook to keep moving forward, despite the physical and emotional difficulties of living with COPD. We are glad to have you as part of the community! Best, Allyson (site moderator)

  • Grandkids3
    2 years ago

    Keep going your doing great. One day at a time. I know how hard it is to do one simple task. Don’t be hard on yourself take your breaks and continue on. That’s what I do. And believe me I need so many breaks but the days long. Lol

  • Linda author
    2 years ago

    It really helps being able to talk to someone who understands. Yes I take alot of breaks when I do anything. It takes me longer but I’m doing it. Good luck to you and bless you ‘Grandkids3’ ~Linda~

  • Edi Mesa
    2 years ago

    You are awesome! You have a nice outlook at life, even after the diagnosis.

  • Linda author
    2 years ago

    Thank you for the compliment, I try to think positive most of the time, it’s what keeps me going. ~Linda~

  • Leon Lebowitz, BA, RRT moderator
    2 years ago

    Hi Linhe and thanks so much for sharing your COPD/emphysema experiences with our online community.
    You provide us with a lot about your history and lifestyle going back eleven years since you’ve been diagnosed.
    Let’s try to address each of your very real concerns.

    Since you were advised that you were in a severe stage, I thought you might find it helpful to look over this article. It speaks to the staging of COPD: https://copd.net/basics/copd-stages/stages-explained/.

    You may also be interested in this article which addresses the very basics of COPD:
    https://copd.net/basics/. You may also be interested to know that COPD is considered to be more of a condition which then can encompass emphysema and bronchitis. I think you will find this article provides a bit more insight on that: https://copd.net/basics/damaged-lungs/.

    I’m sorry to hear about your recent bouts of pneumonia that required hospitalizations but glad to hear you’re starting to see some real improvement. I can imagine how rewarding it must be for you to get back to the upstairs of your house and use your regular bathroom again and sleep in your own bedroom. I’m hopeful you will continue to see improvements to your mobility, breathing and lifestyle that will be even more gratifying for you.
    We’re glad to have you as part of our online community and hope that you will continue to keep us update as to how you’re doing.Please do feel free to utilize our website as often and for as long as you like.
    All the best,
    Leon (site moderator)

  • Linda author
    2 years ago

    I’ve read the highlighted links you posted. Thank you for the information. I see my pulmonologist about every 6 months and my next appointment is Friday the 15th.

    ~Linda~

  • Leon Lebowitz, BA, RRT moderator
    2 years ago

    Hi again Linhe – glad to hear you’ve found value in the posted articles you read. Wow, your visit with the pulmonologist is this Friday already. Good luck there! Please do keep us posted!
    Warmly,
    Leon (site moderator)

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