My worsening COPD symptoms have prompted a change of habits
I'm now using a stationary concentrator at home as I watch my saturation rate
Though I attempted to follow my treatment plan and watched for signs of an impending exacerbation, one crept up on me this summer and caused a worsening of my dyspnea, or the shortness of breath that happens to those of us with chronic obstructive pulmonary disease (COPD).
It’s changed my life, at least for now. I can no longer pretend that I don’t have COPD while doing daily chores, for instance. My portable oxygen concentrator had allowed me the freedom to function without thinking about my diagnosis, but since my exacerbation, my almost-constant companion is my stationary oxygen concentrator with its extra-long tubing.
It reminds me of my disease all the time.
Using the stationary concentrator forces me to roll the hose up or let it out as I walk around the house. As an example, I must roll the hose up and leave it at the top of the stairs as I carry the laundry basket downstairs. Then I roll it back up as I climb back up. The portable concentrator, unfortunately, no longer provides enough oxygen for my daily activities at home.
Maneuvering the tubing is a constant ordeal, and sometimes I get angry about it. I only swore at the tubing twice while changing the drapes in the living room, a task that’s never been easy, even when I didn’t need oxygen. The picture window in my living room is 8 feet wide, so its decorative rod and lined drapery are unwieldy, especially since the fulcrum of that effort — me — is only 5 feet tall. The extra tubing made a difficult task more so.
I’ve been able to continue to use my portable tank for grocery shopping and doctor visits, though, which helps.
Assessing the oxygen saturation rate I need
My oxygen saturation rate seems to be consistently above 88% (normal is 95% to 100%), but that figure drops when I climb the steps with a load of laundry.
Just how long can a person have low oxygen saturation before damage occurs? The answer is unknown. I feel that any amount of time with low oxygen saturation is too long, as expressed in a 2019 COPD News Today article, “Oxygen Manifesto, Part 1: Advice from 3 Respiratory Therapists.”
I’m not sure my oxygen saturation is staying above 88% while using my portable concentrator because I don’t feel short of breath until my numbers are in the low 80s to high 70s. On my outings, I rely on my pulse oximeter, which measures saturation just as it does when I am at home. Though most pulmonologists want the reading to be 92% and above, the danger point is established at 88% and below.
Though I’m unhappy with needing to use my 50-foot tether to my stationary concentrator, my desire to live and remain active outweighs its downsides. I’ll continue to do my aerobics, strength training, and breathing exercises in hopes that I’ll return to my preexacerbation fitness and do without all of that tubing in the house.
Change can be challenging, but we must make the necessary adjustments when our health and longevity are at stake.
Note: COPD News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of COPD News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to chronic obstructive pulmonary disease.
About the Author
Kevin GARDER
Caroline : Your writing is telling the tale most of us now SUFFER with ! Thank you ….. All well said ! Kevin
Deborah L Bartlett
Great article written by Caroline Gainer. She is a strong, smart person. She encourages all of us to keep on going!
Wanda Stevens
I know the struggle. My husband died in a motorcycle accident in early August 2024, 3 days later I tested positive for Covid. I thank God I have a mobile phone and most things necessary for Steve's death could be done online or with a phone call because I don't have a portable machine. I too was tied to my concentrator until just before the celebration of life on August 31. I've never been so irritated in my life with that beast. I also thank God for the medication I was given, being I'm high risk. Some days nothing is right and everything is wrong, the fight was real. God bless and take care.
Margaret Bates
I’m so sorry to hear about your increase in oxygen needs. I also am tethered to a 50-75’ tubing which gets tangled up a lot. We have a love/hate relationship because it does provide me the levels I need. If I use my elliptical or do a cardio video I need to crank it up to 7 or even 8. Have you tried wearing one of the D tanks in a backpack? I always use them when I go out to walk or am with my grandkids. Like you said, the portable works.for sitting at the Drs, movies, dinner etc but any distance walking is out of the question.
Your posts are so encouraging and now even more so because I can totally relate. Hang in there…nothing is impossible!!!
Yvette
After an exacerbation in 2018 I found myself on home oxygen and yes the tubing and the cannula are quite the challenge but that’s what we have to do to keep going. I’m a CO2 retainer so I was advised not to go too high or low. My question is why can’t they make tubing so that it won’t tangle up or bend?.
David Raymond Moonan
So true! Why can't or why DONT they make a tangle free hose or an easy roll up device for our hoses????
Monica Kaufmann
Caroline…changing your drapes by yourself??? Vacuuming upstairs??? I thought you hired some help for housekeeping chores. Are there people from your church or social circles that can help you with the drapes?
You are doing so much to remain independent; I really, really admire you! But sometimes you need to ask for help. It’s a blessing for you and a blessing for whomever can help you out. As long as you keep up your self-care, you can probably return to a POC. You don’t need to wear yourself out trying to prove how self-reliant you are!
Nathaniel Fisher
I was surprised when you mentioned upstairs and downstairs. I commend you for that. My attempt at using stairs is no longer a part of my daily activities. I really wish I was more active as before and that includes walking up a set of stairs. But doing what I can on the ground level.
David A Sylvester
Thanks for another great article Caroline. Your courage is an inspiration to all of us COPDers
Nola
I agree. My pulmonologist recommended a lung transplant which have helped four people I know and apparently everyone leaves the hospital off oxygen
Check out the Dream program on the today show on YouTube too
CS
I can relate and found a couple of things to be helpful. First, use green tubing rather than clear so it is easier to see and not fall over. Second, I rethink the way I do things to make them easier. An occupational therapist may be helpful and can think outside of the box. One idea might be to use a duffel bag that you can carry over your shoulder rather than a laundry basket to get the clothes up and down the stairs. Adding a motorized chair lift may help too. Relocating your bedroom to the first floor so stairs are not an issue. Just some examples of rethinking how to do things.