Emphysema as a Way of Life

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From your About.com Smoking Cessation Expert, Terry Martin: Christine Rowley ran the About.com Smoking Cessation site from 1997 to 2003. She helped more people stop smoking permanently during that time than we could ever begin to count.

Sadly, we lost Christine in July of 2004 when she succumbed to a stroke. I think she'd be pleased to know how much her story continues to help others who are are quitting smoking. Thanks, and may you rest in peace, Christine.

From Christine:

When someone in the family trips over your trailing 50 foot air hose in the family room, you know it, even though you are in the computer room, the kitchen, the bedroom, or the bathroom. If you have a lot of slack, you might not feel it. If there's little or no slack, you feel a sharp yank on your ears, like someone trying to pull them both off at once! Your other scare is that someone has not only tripped, but may have lost their balance and fallen.

Emphysema and a New Lifestyle

What's it like to live with oxygen in a nose hose 24/7 for the first year? From what I've learned and have been told by others with COPD, it is the beginning of what could be years of living this way.

Your life takes on a whole new direction when you are told you have emphysema. At this point you find that you have quit smoking too late. It has been creeping up on you for years. You've been coughing your "smoker's cough" around the clock without giving it a second thought, or kept your head in the sand and tried to ignore that chronic bronchitis which eventually led to the emphysema.

Emphysema and Brain Fog

Although I'd been told I had emphysema (COPD) four years previously, I was shocked when my doctor only just now prescribed around-the-clock oxygen for me. That happened because I'd tried to rake some leaves in my back yard. I couldn't believe how quickly I ran out of steam and could not catch my breath!

Plus, I was in what I called a "brain fog" a lot more these days, so my doctor discovered my body's oxygen level was operating on only 74%, where normally 90% + is acceptable. So, it was oxygen tank time for me.

A New Leash On Life

If you've ever wondered what it's like to be "on a leash", you'll wonder no longer as you try to adapt to your new lack of freedom. Wherever you go, there it is. You'll learn to dress without the "nose hose" on after you've found out what happens when you get dressed and find the hose now runs down the inside of your pants, making it difficult to navigate. For us women, you haven't lived until you've trapped the hose on the inside of your bra and not noticed until you tried to leave the room.

Some "leashes" take a curious delight in becoming entrapped when you close the door on your two door style refrigerator, thereby forcing you to open the door once again to duck to get the looping hose out. Mine does this 97% of the time whenever I open the fridge door. Trust me, this is NOT a good way to stay on a diet!

Nose Hoses and Ear Lifts

Opening a hot oven becomes an exercise in juggling hot racks, hot food, and keeping your cool oxygen hose off the hot surface! This can be done by tucking the hose between your knees. When you get up from the table, or from any sitting position, be sure you are NOT standing on your hose. Your ears will feel like they're going into outer space if you don't get off it quickly! If your ears are close to your head "before nose hose", you may notice them beginning to flare outward if you step on the hose too much. A bold new style of makeover!

Snags

You will soon learn to hold your nose hose with one hand while gallivanting through the house. If you don't, you will experience many backward head jerks due to the hose getting caught around corners, in the corner of appliances (yes, the refrigerator comes to mind again), and under door jambs. The rocking chair is superb at reaching out and snagging it often, and woe is you if one hand has a plate with a sandwich on it, and the other hand has a glass of milk! You have no way of getting free of the snag unless you put something down and yank it out from under the rocker.

Tangles

The tubing (which looks like aquarium air line) can become kinked and tangled after a day of going back and forth and can actually get kinked to the point of nearly shutting off your air. Where you were at two liters of oxygen before, you are now down to below one. Now you'll need to find the kink and un-kink it. As you do, you'll see the level on your concentrator return to two. You'll need to check your concentrator as you go by to be sure you are getting the air you need. The concentrator machine is a bit noisy, so you might want to keep it away from your living room and sleeping areas.

When sleeping, you never know if you are going to wake up with your nose hose still in your nose, or if it's to be found atop your head where you pushed it in the night while asleep, or it may be lost on the floor. Aghast, you wonder if you got enough oxygen during the night. You must also remember to take your medicine, including any inhaler prescriptions nightly.

The Pet Thing

If you have dogs or other pets at home, they will react to your nose hose in different ways. One of mine hates the hose and avoids it like the plague. It's taken him a year to even accept it. The other seems to think it links us together like Siamese twins, and she sits or lays on it every chance she gets. She's responsible for some of my ear tugs, let me tell you!  Cats, as you know, love to chase moving "strings". Keep her nails trimmed.

Oxygen Levels

Power failures are worse for you than your computer dying from power failure. If the power goes off, you need to plug into your bottle oxygen, which only lasts a short time, so it's a good idea to have at least 4 filled bottles around continuously.

Vacations are planned around your oxygen provider's nationwide or worldwide reach and availability of oxygen wherever you go and when you need it. Trips into town or to the grocery store have to be planned by how much oxygen is in the tank you are taking with you. If it's not enough, you will have to change the tank, removing the regulator and putting it on a full tank before going shopping.

Staring Matches

Once outside, either with your large tank with the wheels, or with the portable unit, you cannot elude the stares of both children and adults. The worst are the smokers whose minds you can just about read by the way they look at you in horror. "I wonder if that could possibly happen to me? Nahhhh! I'm not old enough yet!" they think. Well, I used to think the very same way! When you have an oxygen tank, you no longer have an "invisible" disease. It is all too visible to the whole world. And it becomes scary. Almost all emphysema is cause by smoking, did you know that?

Preventable, But Non-Reversible

Emphysema is not a reversible disease because of the manner in which the lung is damaged. You lose more and more elasticity within the lungs as time goes on, and it becomes harder to breathe. You can avoid getting emphysema by quitting smoking just as soon as possible. "Now" would be best. The other option is to never start smoking. Believe me, smoking is not worth going through this in any way, and I wish I had never started smoking as a teen. Guess I should have listened to my Dad, right?

Gratitude

The good thing about having this oxygen 24/7 is that my gratitude has grown because my life has been extended for a time by having oxygen to help my body operate as well as it can. Without it, who knows how short the time would be. I hope that my life will be extended long enough for a miracle to happen; medical or otherwise. Truly, I pray a smoking-related disease NEVER ever happens to you.

Christine Rowley

More from Christine:  Christine's Quit Story

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