Monday, June 8, 2015

Coping With Emphysema/COPD

Photo of Nancy Hardin, wearing nasal cannula, courtesy of Judy Schweitzer

Coping With emphysema/COPD

Nobody gets through life without some sort of illness or condition that must be dealt with in their daily living. We've all had surgeries, broken bones, but then there's something called chronic illness or disease which is a condition that is incurable but can be lived with. This is usually something that challenges the immune system and makes life difficult, challenging our dexterity or ability to be as active as we once were. One of these conditions I've lived with since my diagnosis in 1997 is Emphysema and/or Chronic Obstructive Pulmonary Disease.

Emphysema is included in a group of diseases called Chronic Obstructive Pulmonary Disease (COPD), a long-term progressive disease of the lungs that produces extreme shortness of breath. The main cause of these conditions is cigarette smoking, followed by air pollution such as chemicals or toxins in the work place or home, and an inherited trait known as alpha 1-antitrypsin deficiency.

If you smoke, quitting can lessen the severity or stop the progression of the smoking and pollution produced symptoms. The effect of the inherited trait can be greatly modified by not smoking, taking care not to inhale second hand smoke, and avoiding breathing other toxins and chemicals.

Why is it so hard to breathe?

Here's the reason why people with this condition have trouble getting enough oxygen. Our lungs are like an old-fashioned bellows, in that they are comprised of lung tissue around small air sacs called alveoli. As the lung expands and contracts, like a bellows, these little air sacs (alveoli) help us to keep the old stale air pushed out to make room for the new air coming in. The causes mentioned above destroy the tissue, making the air sacs unable to hold their shape upon exhalation. They collapse and air becomes trapped in the lungs, lessening the space for incoming fresh air and filling the lungs with carbon dioxide, resulting in a continual shortage of breath. Not a pretty picture, but one that is necessary to understand the effect emphysema has on the human lung.

Emphysema Lungs Through A Microscope

This photo shows what's happening to the lung tissue, as the alveoli break down, causing huge stale air pockets that cannot be expelled with normal respiration. As more and more of these little sacs disappear into the large open space, it's a slow suffocation, and the need for oxygen therapy becomes necessary.

 Photo Credit

A Special Breathing Method Helps
This Video Shows How It's Done

Nothing panics a person more quickly than the inability to breathe. But panic feeds panic, and makes getting enough air a virtual impossibility. A method called pursed lip breathing can help to get you through these difficult times and possibly save your life. Practice this during times when you are not stressed, so when the time comes you need to do it, it will become automatic.

This breathing technique is done by taking a breath IN through the nose, and sloooooowly pushing it OUT through your lips that are "pursed" as if you are going to whistle. The trick is to do the breathing out slowly, and not to completely empty the lungs, as that will make you gasp for the next breath. This is a controlled breathing method that can help you through those times when you have an exacerbation, and find you are fighting for air. Controlled breathing also helps to lower your blood pressure and remove carbon dioxide from your lungs.

Whenever you experience a shortage of breath while walking, bathing, changing clothes, or any exertion, remember to stop the activity and do "pursed lip breathing" until you are back in control again.

Travel Is Still Possible

 Photo from our family album of The Regal Princess docked in Juneau, AK

If you've been diagnosed with emphysema or COPD, you can still have an active, enjoyable life if you take care of yourself. Travel is one of the things many people believe is now impossible. That's not true, but certain planning and precautions are needed beforehand. Airlines allow travel with portable oxygen concentrators, however you must  notify them of the condition when making the reservations. Modern day, portable concentrators are easier and more comfortable for use, and airlines will inquire as to what sort of accommodations you are using. 

Road trips are one of my favorite things to do. It's great to tool along our Interstates  connecting all of our states. Makes the trip shorter, and you can still take side trips to scenic or historic places if you wish. We've done many trips by car, and I can tell you I enjoy it tremendously. We stop from time to time to stretch our legs, to eat and use restroom facilities. The United States is a beautiful place when you see it on a road trip.

Don't think a cruise is ruled out, because they're possible too, with advance planning. I went on a cruise to Alaska, my oxygen was delivered to the ship on the day we embarked, along with a concentrator. (More about the concentrator below.) We enjoyed our Alaskan Cruise thoroughly. We were on what is known as "The Inside Passage," visiting Ketchikan, Skagway and Juneau, as well as Victoria, Canada. We plan to do it again.

Yes I know there probably are things you can no longer do, like hiking the Grand Canyon, or bicycling a marathon, or dancing all night. But you might not have done that anyway. Concentrate on the things you CAN do, not on the things you've lost. Mourning about the loss of those abilities won't reinstate them. Take pleasure in the things you ARE able to do and enjoy your life.

Don't Stay Home All The Time

I urge you not to allow your condition to make you a prisoner in your own home. You can still get out and go places. There are companies who deliver oxygen tanks to your home, so that you need never become a recluse. You can still be active to the best of your abilities, as long as you have the proper equipment. There are two three methods for portable oxygen currently in use; tanks, liquid, and portable concentrators. You and your doctor should make the decision as to what is the right one for you. Whatever method is chosen, you can go places and do things without fear, as long as you go prepared.

Oxygen Tank Storage

Depending on the method you use, this part may not apply to you. But if you are using oxygen tanks, always store them upright in a well-ventilated area. One of the things I've found works well for me is using a cardboard shoe storage container, turned with the shoe openings up. I put it inside my front door in my foyer, and this is where I store my tanks of oxygen upright. They also get good ventilation there, since there is an air conditioner vent nearby. This arrangement also makes it easier for the delivery person to quickly swap out the empties for the full ones.

TIP#1: Oxygen tanks come with a tape or plastic seal around the top,usually green in color. In order to use the oxygen that seal must be removed. This makes it possible at a glance, to see how many tanks have been used and let your oxygen provider know how many you need on the next delivery.

TIP#2: Never allow any smoking in a home that contains oxygen or an active concentrator. Oxygen is not in itself explosive, but feeds the fire around it. An open flame or cigarette smoking nearby could result in terrible injury or even death. Make sure you have no smoking signs on your door, so that nobody is smoking when you open the door.

Breathe Easy With Help Of Inhalers

Another helpful aid for your breathing are inhaled medications prescribed by your doctor for emphysema or other lung diseases. Those shown here are the two prescribed for me by my doctor; Spiriva and Symbicort, used for their long term effect on your lungs. They are both used for the specific purpose of helping your airway and lungs provide your maximum breathing capability. Spiriva is normally used once a day, and Symbicort twice a day. Your doctor may prescribe something else, depending on the severity of your condition. These are NOT to be used in case of an emergency breathing problem. (See paragraph below.)

Photo Spiriva and Symbicort Inhalers courtesy Nancy Hardin

Emergency Rescue Inhalers

Because of the nature of emphysema/COPD, patients like myself experience what is known as "exacerbations." When one of those hits, we need quick relief. If you've been diagnosed with a lung condition that may cause these episodes, chances are that your doctor will  prescribe a "rescue inhaler" for you. The one provided for me by my doctor is Proventil, to be used in the event I am struggling to breathe. It works almost immediately and allows me to begin to breathe evenly and deeply. If you've been prescribed one of these, be sure you always have your rescue inhaler with you whenever you leave home for any period of time. A side effect of this medication is that it may cause you to feel shaky and nervous for a while. But those effects are soon over, and the ability to breathe again is certainly worth it.

Proventil Rescue Inhaler photo courtesy Nancy Hardin

No Smoking Oxygen In Use


Your Lifeline Is An Oxygen Converter

Here's the good, the bad and the funny about being connected to an oxygen converter. A converter is a necessity for anyone who is on a continual, 24 hours a day, 7 days a week usage. The converter runs plugs into your regular household electricity and you can set the liters of air it delivers and go about your house without having to carry a tank. That's the good part, but the bad part is being tethered to it by a 50-foot line. Now I admit, I wasn't happy about that part, but I soon learned to live with it, which is a heck of a lot better than not living. At first it may seem to be a hindrance, having that line connected to you at all times. But here's the funny part, gradually as you adjust to it, you actually sometimes forget that you are wearing it. I've had my purse on my arm, ready to go out the door, when I've suddenly realized..."Hey, I can't get any further than 50-feet with this! What was I thinking?" I've gotten a laugh from my family more than once over this. Oh well, I grab my portable tank, turn it on, turn off the concentrator and away we go.

 What  About A Power Outage?

If there is a power failure any time, even during the night when you are asleep, the machine has a loud, sharp whistle that will bring you to your feet. That's when you go on your portable oxygen tanks until the power comes back on. Physicians advise not to go to sleep with a portable tank, because when the oxygen runs out, you could be in danger. Accordingly, if your power stays off for longer than a couple hours, go to a friend or relative's house where you can take your concentrator and run it from their electricity, so you can sleep. Failing that, go to a motel and take your concentrator. When your power is back on, you may safely return home.

A video on how to use your nebulizer - Plus troubleshooting tips

It's possible you've been advised to use a nebulizer. Before I was put on Spiriva and Symbicort, my doctor had me doing breathing treatments with albuterol in a nebulizer every 4 to 5 hours. This is another medication that makes you shake, but it opens your airways. Some doctors find that with the use of the long term inhalers, this is no longer necessary. I keep my nebulizer and some albuterol on hand, just in case I ever need it. The video below explains how to properly use the nebulizer.

 Other places for information about emphysema/COPD

Enjoy Your Life

It is my hope that you will live your life well, even with emphysema or COPD  and on oxygen daily. You can still live your life, you just need to make a few modifications to the way you do it. Once you accept that, you find there's still so much to enjoy in the world