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The COPD bump

The COPD Bump

I had suffered with COPD for 21 years when I suffered ‘the bump’: A tipping point when suddenly, seemingly almost overnight, I became so disabled I could no longer work, or walk far. I was shocked, and shaken by my sudden reduction in mobility. I had gone through the various stages. Slowly my lung function had declined and I slipped into the worse grade. Very severe COPD, of which my main component is emphysema. Most things were more of an effort but I coped. I learned to walk gradients slow, walking itself was hard but possible even if very slow. I learned as my lungs became worse to find a way to cope. I could with effort manage most tasks, and worked even if very breathless. That is until the ‘bump’.

The bump happened so fast I was left stunned. No longer could I do many jobs that only a very short time before I could. No one had prepared me for the day when I had to make the decision to use a mobility scooter, now not able to walk more than a very short distance without stopping to regain breath.

I am not alone. Many have had the same experience. To suddenly realize they are truly disabled, at the point where most activities have to be planned. Days of carefree abandon gone. The days when I would rise from bed and make a hasty decision to take to the hills. Or head for the coast for a long weekend camping now gone forever.

Now a trip is planned like a military exercise. Is where I am going disabled friendly? Does the hotel have steps to contend with? Can I charge my scooter battery? Or have oxygen delivered? I Google Earth walk all places I don’t know to learn as much as possible what if any obstacles I may face. My mobility scooter and oxygen supplies are always loaded into the station wagon – unable to venture anywhere without them. So why did I suddenly get worse? What did I do that was wrong? You maybe surprised to learn I did nothing wrong, nor had I gone into sudden decline.

I posed the question, ‘ Why did I suddenly become disabled when before I had been coping?’, to one of our lung specialist medics and was amazed by the truthful simple answer: that there is a tipping point. For many years I had learned to cope. But had reached the stage when I simply did not have enough lung capacity to do many thing I wanted to. I had reached the point when there is no spare capacity to use. I had around that time had an exacerbation, and it is likely that was when I lost that small amount of capacity it was enough to make the difference.

Since my diagnosis 21 years earlier my lungs had got slowly less able as lung function had declined. I had learned to cope by slowing down, or simply taking more breaks. In some tasks I found easier ways to tackle them. Even if that meant it took longer to do.

Little did I know that after 21 years the tipping point was looming. When my decline would mean there was no spare capacity to use. The point reached that meant whatever I did there would never be enough output from my weakened lungs for many tasks. I had only lost a further small amount of lung capacity. But that was enough to push me over the tipping point.

My life had to change from that stage. I learned to use aids when needed. To ask others for help at times. To delegate. To pace myself more. I soon was using oxygen also. But my life did not end there. It is now seven years since reaching ‘the bump’, and am busier now with volunteer work than I ever was during my working life. I enjoy most things in life including visits to attractions or to a restaurant, the only difference being everything has to be planned. My optimism is good too. With so many new drugs and so much progress being made in research for COPD there will come a day when our position will change dramatically. We just have to keep living, keep breathing.

So if you ever suffer the bump, remember: there is still a wonderful life to enjoy. And who knows? One day, you might suddenly find a way for us to breathe easier has been made.

Till I write again. Keep smiling. But most of all. Breathe Easy.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The COPD.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Leon Lebowitz, BA, RRT moderator
    1 year ago

    Hi scyeoman and thanks for your post. If that’s the case, this could be a considerable challenge. However, if you do a GOOGLE search using the words portable oxygen concentrator 6LPM, you’ll see some manufacturers claims of portability in this range. They appear to be rather pricey but the claim is they provide what you are looking for. Have you had an opportunity to evaluate them for your needs? Wishing you the best, Leon (site moderator)

  • ttony
    1 year ago

    is it harmful to take cialis with copd?

  • Leon Lebowitz, BA, RRT moderator
    1 year ago

    Hi ttony – on our website we are unable to provide medical advice or diagnostics (for your own safety). Although you have a valid concern, this is a question that is better directed at your prescribing physician. Please check back and let us know how you’re doing.
    All the best,
    Leon (site moderator)

  • Nanatheresa
    1 year ago

    This is a fantastic learning piece. It has a lot of information that I had never thought of. I love a story that leaves me thinking. Bless you.

  • Leon Lebowitz, BA, RRT moderator
    1 year ago

    Hi Nanatheresa and thanks for letting us know how helpful you found this article by Derek Cummings on ‘the bump’. It has been a very popular article amongst our community members.
    All the best,
    Leon (site moderator)

  • Maurine
    1 year ago

    I am feeling a little stronger. I am o continuous flos 02 and the portables cant provide that amount so I cant fly.

  • Leon Lebowitz, BA, RRT moderator
    1 year ago

    Hi again, Maureen. Good to hear that now you’re feeling a little stronger. Others in our community have been on continuous oxygen therapy and have been able to fly. There are commercially available portable oxygen concentrators which can be your source in addition to the small cylinders you may need going to and from the airport. Here is an article that provides a lot more information on this very topic: https://copd.net/living/on-oxygen-on-the-go-part-5-plane-train-bus-or-cruise/. Wishing you the best, Leon (site moderator)

  • scyeoman
    1 year ago

    Leon, when you are on 6.5 liters, you are unable to fly. There are no portable oxygen concentrators that go that high. A small cylinder lasts me just a little over 30 minutes.

  • Maurine
    2 years ago

    Thank you for sharing.. I am feeling very depressed because of my lack of energy. I have also learned that I will not be able to fly to Boston for my granddaughters wedding. I am on continuous flow oxygen

  • Lyn Harper, RRT moderator
    2 years ago

    Hi Maurine – I’m very sorry you’re depressed. This time of year can be hard to get through especially if you’re not feeling well. I’d like to reiterate what Leon suggested and make sure you confirm with your doctor and airline that you aren’t able to go (if oxygen is the reason). Most airlines have become very “O2 friendly” and will make accomodations for travelers. Another option you may want to check into is the train. They have sleeping compartments that are very comfortable – sort of like a traveling hotel room. It might be worth checking into.

    I hope you’e able to get there! Let us know.

    Regards,
    Lyn (moderator)

  • Leon Lebowitz, BA, RRT moderator
    2 years ago

    Hi Maurine – and I’m sorry to hear you’re feeling depressed. You are certainly not alone when you describe your lack of energy. I thought you might find it helpful to look over this article on that very subject: https://copd.net/living/tired-vs-copd-tired/.

    I’m not sure if what you’re saying is you’re unable to fly to your granddaughter’s wedding because of continuous flow oxygen. You may want to check with your physician and the airlines to make certain. We know for a fact that airplane travel can be done safely – even when you are on supplemental oxygen. If it’s not too late, I would urge you to look into this.

    Good luck!
    All the best,
    Leon (site moderator)

  • Bambi11
    2 years ago

    I love this article and am glad that most people are learning to cope. I have severe COPD/emphysema and am on oxygen 24/7. I’ve had it for 5-years. I went to pulmonary rehab, etc., and enjoyed it. My problem, however, continues to be anxiety. I’m on medication for it and also have to have a day or twos notice for doctor’s appointments or any outing. I normally don’t go out much because I don’t like people to have to slow down because of me. The anxiety causes me to lose my breath and it’s just a vicious circle. I don’t want to embarrass others or myself when an anxiety attack hits. I cry out of embarrassment for me and those I may be with. It’s just so hard to leave my “safe zone”. Thanks for listening and I’m glad I’ve joined a support group that understands what I’m going through and vice-versa. Be well and God bless.

  • Leon Lebowitz, BA, RRT moderator
    2 years ago

    Hi Bambi11 and thanks for candidly sharing your current experiences with COPD. Once here, you are never alone. You have an entire community that understands what you’re saying and also what you’re feeling.
    Please know that you are always welcome here!
    All the best,
    Leon (site moderator)

  • Pamela191
    2 years ago

    Good article. I was fine until my birthday this year on the 31st of January. I had been hiking, tai chi, gym, cardio classes and all of sudden in a matter of months I couldn’t even walk my driveway. I am now done with pulmonary rehab and have joined my local gym again and using oxygen, for everything, are back to walking a mile, using some machines and trying to gain back some muscle mass. I am now on oxygen 24/7 along with my husband and find a great reluctance in trying to go anywhere. So much has to be covered. Thank you for the article as now I at least have a name for what happened.

  • Leon Lebowitz, BA, RRT moderator
    2 years ago

    Good for you, Pamela191. Glad you found value in this very popular article that Derek has written. It sounds like you’ve made and are continuing to make good progress. Utilizing the supplemental oxygen, completing a pulmonary rehabilitation program, continuing in the local gym to stay active has kept you on track and being positive. Keep up the good work! And thanks for sharing your experiences with our online community.
    All the best,
    Leon (site moderator)

  • Crazyredhead
    3 years ago

    I just want to know how you load your scooter? I have severe COPD / emphysema, and my lung function is 16%. It takes everything I have to move around. I have a lift on my car but to go out in the wind, cold, heat, and to actually tighten the belts to hold the scooter in place is all a curse to me. So, the scooter mainly sits in my home. I live by myself and don’t have any friends close to me to help, and I refuse to call someone to come daily who lives a half an hour away. So while the lift and scooter are a blessing, they are also a curse! Thanks

  • apeter7874
    1 year ago

    How long have you had copd?

  • Derek Cummings author
    3 years ago

    Hi crazyredhead.. I only have one strap that goes around my scooter when loaded. A seat belt strap so easy to click in and and out. The hoist is electric. My scooter never leaves the car and sits at the back of the station wagon at all times so is always ready to take out and start riding. Like yourself there are days that can be very hard despite the hoist. High winds are a curse, as is the cold although I do not often go out on the scooter if it is cold. And then only to run around shopping Malls.

  • molly
    3 years ago

    That was just what l needed to read…. it helps…. have had a real off week and it seems to come from if we take off somewhere for a few days when l get home it takes longer to bounce back…. your story was great ,thank you, molly.

  • Leon Lebowitz, BA, RRT moderator
    3 years ago

    This article – “the COPD Bump”, posted by Derek, back on December 30, 2015, has stimulated a lot of activity and interest from our COPD online community. It is evidenced by the number of comments (below) in which community members have ‘joined in’ the conversation.
    On our Facebook pages, even more conversation has taken place amongst many more community members. Just take a look at the thread here: https://www.facebook.com/copddotnet/notifications/?section=activity_feed&subsection=share&ref=notif&target_story=S%3A_I100000663528623%3A1258533564178749&content_id=1686625584928793

    Now, another community member, Ginaapple, has posted her views in the ‘stories’ section about something very similar. It is called “Falling Off The Precipice”. I thought it would be helpful for people to read her sentiments as well. You can find it here: https://copd.net/stories/falling-off-precipice/.

    I plan to put a link to ‘the COPD Bump’, in her story too, which should keep both of them linked for future reference.
    All the best,
    Leon (site moderator)

  • Josgid
    3 years ago

    officially diagnosed with COPD IN July of 2014 but must have had longer. From than to now O have gone from Oxy 24/7 @ 8 ltrs to now 5 ltrs. No exasperations able to perform more functions with less loss of breath and feel pretty good overall. keeping to Meds.and no more smoking… …FYI

  • Leon Lebowitz, BA, RRT moderator
    3 years ago

    Hi Josgid and welcome. We appreciate you sharing your experiences with our online community. Sounds like you’re doing the best you can staying on your treatment regimen and of course by staying away from the smoking. Quitting smoking, as you may know, is the single most important thing you can do for yourself with COPD. It also sounds like you’re starting to feel somewhat better.
    All the best, Leon (site moderator)

  • kdboca2
    3 years ago

    I went from easily walking 3.5 miles without oxygen to being able to walk less than 100yds with oxygen. Had an exacerbation between. While not exactly coinciding with my walking ability, my CT scans show that bronchiectasis was only present after the “bump”. Is that related?

  • Leon Lebowitz, BA, RRT moderator
    3 years ago

    Hi kdboca and thanks for your inquiry. Although similar, COPD and bronchiectasis are not the same disease. They actually can co-exist although that is not common.
    Your condition and symptoms may have changed after ‘the bump’, as you described – but I would urge you to discuss the specifics of your condition with your physician. I hope this brief explanation has been helpful for you. Please check back with us and let us know how you’re doing.
    Warm regards, Leon (site moderator)

  • LindaM
    3 years ago

    Just got the news that I only have 17% of my lung capacity left and there is a growth in the right lung. Doc says he is 60% sure that it is cancer but he can’t biospy it. The biospy could collapse my lung and I could die on the table. They are going to wait two months and do another DT tosee if it is growing. If it is the we will know. Meeting with hospice on Tuesday to get set up for services. I think I have tipped….

  • Leon Lebowitz, BA, RRT moderator
    3 years ago

    Hi again LindaM, and thanks for giving us an update on your condition. I’m sorry to hear what you’re going through. It sounds (from your posts here) that you have given this a lot of thought and are making the (difficult) decisions that are right for you.
    Please feel free to continue to keep us updated. You are always welcome here in our online community.
    All the best,
    Leon (site moderator)

  • LindaM
    3 years ago

    I have had COPD for 7 years and have been on O2 24/7 since my first hospitaliation in 2009. I was treated for pneumonia again in Feb 2015. At the time I left the rehab facility I was at 23% lung function. I had a new Spirometry test and CT scan done last week and my lungs are at 17% and theyfound a 2cm mass on my left lung. Since my lung function is so low, they cannot do a biopsy but are telling me that they are 60% sure that it is cancer and they want me to go on hospice. I am still on O2 at 3 l/m. They will do another CT scan in 2 months to see if the mass has grown. If it has, it will confirm the cancer diagnosis. They are telling me that treatment for cancer given my lung capacity will kill me.

    I have give this a lot of thought. I can still walk using my rollator and can still do simple functions around the house. I went out to lunch the other day and had a good time. So until I start feeling like I only 17%, I am going to do what I can when I feel like it.

    I am going to take Mary’s advice and go on hospice. They offer services that will help me out and give me additional support. I am also going to do a DNR. I don’t want to end up in a bed permanently tubed and ventilated. No one knows how long they have with this disease so I will take one day at a time and do the very best I can.

    Keep Breathing…..

  • Derek Cummings author
    3 years ago

    So sorry to hear about your further problem Linda. I know of many that have used hospice services and they speak highly of them. They can as you say offer support that cannot be found elsewhere. I also had two x rays to see if a small growth in my lung was cancerous and it was not. So don’t give up on it.
    So very good to hear you say you went for a lunch and had a good time. We must stay as active as we can and fight this illness as much as we can.
    My thoughts are with you. Take one day at a time and try and enjoy each day as much as you are able.
    Derek

  • Rich
    3 years ago

    Hi Derek I also have been there but it happened because of noncompliance stupid me not listening embarrassed. I guess I’m 63 now but was diagnosed about several yrs ago was suppose to be on oxygen but wouldn’t ,went into failure a yr ago and ended Jun the hospital for three months five weeks in a coma and lost all memories of most of my stay ,it was very hard to get out of the nursing home u have to meet certain levels of health before they will order what u need to go home u know like ox and home fills ,I was trached with vent so I finally got it out last Dec. Now I know what your going through I hope it doesn’t get any worst I fear the stories I hear from guys like u ,I have found that exercise helps I’m on ox 24/7 and on 6 liters which is quite a lot I do up to ten miles on my stationary bike and sit ups lift weights and it helps with the numbness I get in my toes and walk better building the muscles some days are better then others but when I got home I couldn’t walk fifteen feet without stopping catching my breath ,I also have a fib and a passer,which I think keep me going at times so it has been a tough road guys like us have to get tougher and not let this thing kill us fight your best fight and all hope and prays will see us through ,

  • Derek Cummings author
    3 years ago

    Very many thanks for telling your story Rich. I bet you feel a zillion times better now you are using o2. I know my life has been much improved since I started using o2 four years ago. Sadly many die because they have failed to use prescribed oxygen.
    Really good that you are getting as much exercise as you can as that is essential. I know it is hard but keep going and the rewards is feeling better and being able to do more.
    Yes life is tough at times. But do the right things and we can still lead a good life. Keep on fighting Rich. I am sure you have lots more good times to come even if we have to fight for them.

  • Linda
    3 years ago

    I too have severe COPD.I had a lung function test and have 37% capacity.I am on oxygen 24/7,have a c-pap machine and have compressed fractures of my back(L3,L4,andL5) so I feel your every move.I just wish we knew how long we have and what we could do to prolong our life……

  • Leon Lebowitz, BA, RRT moderator
    3 years ago

    Hi Linda and thanks for expressing your thoughts here. You certainly have challenges since you are dealing with severe COPD and compression fractures in your lower back. I would suggest the best approach is to follow your physician prescribed treatment regimen and be compliant with your medication schedule and dosages. Enjoy your family and friends and try to live each day the best you can. You’re always welcome here. We try to provide support and information on all COPD related topics. Best regards, Leon (site moderator)

  • 1ih3sli
    4 years ago

    Thanks for your insight. I too have to plan any trip or activity and it helps to get information from a fellow sufferer.
    Thanks,
    Jean

  • Leon Lebowitz, BA, RRT moderator
    4 years ago

    Hi Jean and thanks for posting your thoughts. There is always a lot of support and information here on COPD.net. We’re glad you found us and are pleased with your participation, too.
    Regards,
    Leon (site moderator)

  • Scott
    4 years ago

    So how come it took this person 21 years, to get to where I’m at now and I just found out a year and a half ago, that I had COPD, I’m stage 3 with lung function of 42%

  • Leon Lebowitz, BA, RRT moderator
    4 years ago

    Hi Scott and welcome! We appreciate your inquiry. Please try to remember that every patient with a diagnosis of COPD is different. We can share our experiences which may be similar but never identical. Medical history, age, comorbidities, treatments, response to medications, and diagnostic procedures (to name but a few) all yield a very individual person/patient with very individualized person-specific symptoms. Again, similar but not identical. We’re glad you found our community and hope to hear more from you. Happy New Year! Warm regards, Leon (site moderator)

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