COPD: “The toughest thing is getting my mind to accept my new physical limitations.”
Published Dec 29, 2021 • By Courtney Johnson
Dunecitymike, a member of Carenity US, was diagnosed with end-stage emphysema 19 years after quitting smoking. He shares how he has learned to live with the disease on Carenity!
Read his story below!
Hello dunecitymike, thank you for agreeing to share your story with us on Carenity!
Could you tell us a little bit about yourself?
I am an 81-year-old end-stage emphysema sufferer living for the past 40 years in my lake-front cottage on the central Oregon coast. I ran a seafood market for ten years, was a real estate broker for 20. I eased into retirement while caring for my wife through her final illness, then volunteered at the local food pantry for 11 years.
Photo courtesy of Dunecitymike
I live alone, our only child being married for 25 years and living on the East Coast. I rebuilt a seriously run-down house over the first decade we lived here. A lot of sweat-equity in this 84-year-old house.
When I was able, I did mostly scratch cooking and pursued my hobby of amateur photography. Now I fill my days with public radio, newspapers, TV, and Facebook. I introduced my now 52-year-old daughter to Facebook in about 2008. I was building my own computers in the 1990s to save a few bucks.
How long have you had COPD? When and how were you diagnosed? How did you feel when you got the news
My primary care PA suspected COPD, and it was determined through testing that I had emphysema.
That was 19 years after I quit a 2+ pack a day cigarette habit developed over a span of about 30 years. It took quite some time after diagnosis to get into my thick skull that this was likely a death sentence.
Did anyone discuss or were you concerned about life expectancy with this condition?
My cardiologist told me that my heart wouldn't kill me, but my primary care provider told me that my lungs would. A timeframe has not been discussed...I take one day at a time. (I'm also a recovering alcoholic)
What treatments or medications have you taken up until this point? Are they effective?
I am currently on a nebulizer every 6 hours, I carry a rescue inhaler (albuterol), and take Trelegy once daily.
I feel these have slowed but not stopped the progression. I have been on supplemental oxygen for years.
Have you changed any of your habits or routines to better manage your COPD?
At 81, it's hard to separate limitations caused by age from those caused by COPD. I farm-out landscape care, grocery shopping, house-cleaning. I have not even been down to my dock in several years, let alone out on the lake in my rowboat. My driving is limited to the 75 feet up my driveway to the mail and newspaper boxes daily, and I become winded walking out to my attached garage.
A good friend and fellow food pantry volunteer picks up my meds and delivers me to medical appointments. Another does my grocery shopping. I shop online for other things I need. As an only child I'm used to being on my own.
Have you tried or been offered a respiratory rehab program? If so, what did you think about it?
I was referred to the cardio-pulmonary exercise clinic, but after experiencing high heart rate from the exercise (I now have meds for tachycardia) I pulled myself out of the exercise program. The jock who ran the program has since died from a heart attack.
Physically or emotionally, what is the hardest part about living with COPD?
The toughest thing is getting my mind to accept my new physical limitations.
How are you doing today? Have your COPD symptoms improved?
I feel pretty good today. My COVID vaccine symptoms have been worse than my COPD. I have had two Pfizer COVID shots and a Moderna booster and to the best of my knowledge have not had COVID. Some emphysema symptoms could be mistaken for COVID, but I’ve never taken a COVID test.
Trelegy seems to have helped, in my amateur medical opinion.
Many thanks to dunecitymike for sharing his story with us on Carenity!
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