The New Face of COPD: Tim
Chances are, you or someone you know has COPD (Chronic Obstructive Pulmonary Disease), an umbrella term for emphysema and chronic bronchitis. COPD is a common disease, probably much more common than you think. In fact, over 12 million U.S. adults are estimated to have COPD. But even more alarming is evidence that close to 24 million people have impaired lung function, indicating a vast under diagnosis of COPD.
Interesting facts, yes, but when it comes right down to it, when you're the one who has COPD, it's not the millions who matter most. It's just you, and the people closest to you, who must live day-by-day, night-by-night, breath-by-breath with the challenge of COPD.
In honor of COPD Awareness Month, over the next two weeks, I'm going to introduce you to four people living with COPD. Come along with me and meet them, and when you do, I think you'll be surprised that your idea of what COPD is - what you believe it looks like and what you think it has to be - isn't necessarily so.
Last week, we met Eileen. Next, we'll meet Dee and Ken and hear for how we talk about living - not dying - with COPD. Learn how COPD is no longer a death sentence; and why it doesn't have to be about isolation and illness, but being part of community and living well. This is what living with COPD should be all about.
Location: Lincoln, IL
Occupation: I was in the Air Force for two enlistments, then trained to become a Certified Nursing Assistant (CNA). Eventually, I was a supervisor in a group home for developmentally disabled adults. I was promoted to a better job with more responsibility, but then I had an exacerbation and after that had difficulties working even six hours a day before becoming fatigued and having to go home. I then had no choice but to go on disability.
When were you diagnosed? 1985 moderate COPD, while in the Air Force; and in 2004, very severe.
What was your reaction to the diagnosis?
Denial. I didn't believe I was as sick as they kept telling me. I didn't have the normal SOB (shortness of breath) that one would associate with COPD. Although my SPO2 (oxygen saturation) was dropping down to 80% (should not be below 92%) at rest and even lower with exertion, I didn't have a clue. Just kept smoking right on through it.
How did your family and friends react?
Denial at first, but now they have gotten used to the fact that they can't smoke around me or come around when they are sick. They know I will tell them when I don't feel like doing something they want me to do. I don't try to do everything I used to do and slowly they have accepted, and I think understand. They aren't afraid to ask questions and voice their opinions about the care I get.
Do you use supplemental oxygen?
Do you take inhaled medications?
Advair 500/50, Spiriva, and Albuterol.
Do you exercise regularly? If so, what do you do?
Theraband, stretches, exercise bike and treadmill.
Tell us about pulmonary rehab. Were you scared at first?
The first time, I didn't want to be there but the ladies who run the program were so nice and helpful, you couldn't help but follow their directions. I was so active at the time, I didn't really notice any improvement. I didn't even make it through the first 20 classes. I didn't want to pay the co-pay and you have to remember that "there wasn't anything wrong with me." LOL.
I went back in 2007 because I requested it. At that time I was very deconditioned and by the time I finished Phase two and was getting ready to go into Phase three maintenance,
I felt like a new person. I've been going every since.
What is your biggest limitation from COPD?
I have a lot of problems trying to breathe when I'm outside. I don't have much of a social life, and very few friends anymore.
Most of our friends were work-related and when I had to quit working we just seemed to drift apart. We were always outdoor people and did a lot of camping and hiking. Since we can't do those things any longer, we just don't have a lot in common with them anymore. I don't think it's anybody's fault, it's just the circumstances. We still see some
of them and have them over for dinner and we still get invites but just not as often as we used to.
I went online to find information and found all kinds of support groups. After awhile you find the places that "fit" and make friends that, although you may not ever meet them
face to face, they become your closest friends.
By attending Pulmonary Rehab I have meet people in my local area with the same problems I have. Friendships have developed and it's nice to be able to talk to
someone face to face who understands what you're taking about. Awareness and helping others is very important but sometimes you just want to have a conversation without
giving a class on the use of O2 or whatever.
If there is a Better Breather's Club in your area, attend it and see if you find it worthwhile. Many of these clubs offer a great place for camaraderie and support.
They offer education and a place to be with others.
What has been most surprising about life with COPD?
The lack of knowledge about the disease, not only among your everyday person on the street, but in the medical profession. It just seems like there are no set standards amongst the medical profession. Every doctor I see has his own idea about how to deal with COPD. I know it comes from their training but I have tried and tried to find some kind of common ground with them and they all disagree. It can be from how much O2 (oxygen) you should have, to how low or high your oxygen saturations should be. Should you be
hospitalized for an exacerbation and which meds should be used? It goes on and on.
What has helped the most?
Support Groups and Pulmonary Rehab.
What has helped the least?
The health care system in general. Specifically, the financial side if it.
How is your health now, compared to when you were first diagnosed?
I have learned many things to help me get through my day but this is a progressive terminal disease and every time I get sick or grow another year older my health deteriorates. I have been holding my own for the last couple of years but there's no guarantee about how long that will last.
If you had to give one piece of advice to somebody with COPD, what would it be?
Learn everything you can about the disease. Never stop researching and always stay current on new developments. Work with - not against - your doctors and keep as fit as possible.
Do you have a personal philosophy that keeps you going?
Strive to do as much as possible for as long as possible.
Coming soon, the third personal profile in this series...
Jane M. Martin, BA,CRT is the Director of BreathingBetterLivingWell.com