Each one of us takes for granted that we will get up each day and be able to work, shop, visit others, go to dinner, take a drive or do anything else our heart desires with little or no problem. When you have a chronic lung disease and/or are prescribed supplemental oxygen, your day requires careful planning. Sometimes/ the things others find routine or simple, like going shopping, taking a walk on the beach, or a trip to visit others, can be an excursion that may or may not be feasible if you have COPD or another lung disease.
Folks who suffer from lung disease find activities of daily living difficult at times. Some wake in the morning and have to take a breathing treatment before their feet hit the floor. Chronic shortness-of-breath plagues them. Sometimes, they need to increase their oxygen liter flow so that they can shower or eat or perform any exertional activity. They find that simple tasks take a lot longer than they used to and can make them shorter of breath and it can take them hours to recover.
Climbing a staircase can be daunting, making a bed is exhausting, vacuuming is usually out of the question, even just eating or brushing their teeth can make them tired. Remember, all of these tasks require us to use our muscles, muscles require oxygen to perform and these folks cannot keep enough oxygen in their systems to perform even simple tasks. Even things you would never consider exertional, like eating, talking, brushing their hair, or moving their bowels can cause shortness of breath.
So, why are COPD or other lung diseases so debilitating? Let’s discuss the most common, COPD, or “chronic obstructive pulmonary disease”.
It is a condition where the lungs have been altered by the destruction of lung tissue, especially the small air sacs called alveoli. In the lungs, this is where the body takes room air which has 20.9% oxygen and transfers that oxygen to our bloodstream. If the lungs are impaired, this amount of oxygen is not enough or has trouble entering the blood stream and many times “supplemental” oxygen is ordered by a physician so that the patient can stay healthy, reduce their shortness of breath and attempt to live a semi-normal life.
People with COPD also cannot fully exhale. They have a situation called “air-trapping” where the lungs will always have more residual volume than a normal person and no matter what this extra air can never be exhaled fully. Air trapping puts a lot of stress on the diaphragm and flattens it. This flattening makes it much more difficult to pull air into the lungs and more difficult to exhale air fully from the lungs. It can also cause a patient to retain more carbon dioxide than is normal.
COPD is an umbrella term for emphysema, chronic bronchitis, and severe asthma. The most common, emphysema, has two main causes; one is hereditary which is very rare, and the other is from smoking or exposure to irritants or pollutants.
Cigarette smoking is the main cause of COPD in the US. In 2019, there were 3.23 million deaths attributed to COPD. West Virginia has the highest incidence in the US and the highest incidence based on adult smokers. In this state, 20% of adults between 25-44 yrs. of age use combustible tobacco products. But the problem is not confined to West Virginia. No state is immune to this problem. Today, more women and youth are smoking or vaping (we still don’t know the long-term effects of vaping).
COPD is not a disease that comes on overnight so noticing the subtle, early signs may be difficult. It is insidious, and takes many years to develop. It is costly and it requires a lot of resources, missed days from work and most times results in multiple hospital stays and MD visits for sufferers. It can cause a loss of income for the patient as working is difficult, especially if they are on oxygen full time. Maintaining a home becomes more challenging. It causes physical changes as the patient usually develops secondary co-morbidities, like hypertension, cardiac disease, diabetes and osteoporosis as well as psychological changes due to the alterations in lifestyle, the dependency on others, and the ultimate knowledge that COPD is progressive and fatal.
So, what does a typical day of a COPD patient look like?
They usually sleep longer than they used to. They are more tired due to the lack of oxygen or the low oxygen levels in their bodies. Many will utilize a pulse oximeter to monitor changes in their blood oxygen levels. They are chronically short of breath. If they are on supplemental oxygen, they often times have to make changes to the liter flow (amount they need) depending on what task they may be performing. Just to walk from the bedroom to the bathroom may require an increase in liter flow.
Coughing with sputum production is a hallmark sign of COPD and is usually worse upon awakening. Some patients need to take a breathing treatment before they even try to perform anything. The treatment will deliver medication into their lungs and help to open up the airway to make it easier for them to breath and to cough up the phlegm (breathing treatments are usually taken every 4 to 6 hours).
Once they are up, they will need to eat. One of the problems with COPD, especially end-stage, is that the patient is not hungry due to the flattening of the diaphragm from overinflation of the lungs. The lungs try to compensate by increasing in volume, but this puts pressure on the diaphragm, and the space where the stomach lies is made smaller and this causes discomfort when eating.
The patient must try to stay away from foods that may trigger indigestion. Indigestion can make it harder for them to breathe.
Foods that are notorious for causing havoc for COPD patients: salty foods, spicy foods, fried foods, high fiber foods, carbonated drinks, alcohol and caffeine. Gassy foods or foods that cause bloating, can put an extra strain the diaphragm and should be avoided.
Breakfast may be the most important meal for a COPD patient. As the day wears on, they may be too fatigued to eat. Breakfast should consist of a protein and some fiber. Dairy should be avoided as it increases mucus production. Supplemental drinks like Ensure or Boost are a good option for patients who cannot eat very much. It is encouraged that they eat small meals throughout the day as opposed to large meals three times a day.
COPD patients need to drink more to stay hydrated so that their secretions are easier to mobilize out of the lungs. Digestion requires blood to be diverted to the stomach, so this can cause the COPD patient to require more time to digest and makes them tire easily after meals.
Showering or bathing is a very exertional task. Between the humidity of the shower environment, and the multiple movements needed to wash oneself, it may be only performed a few times a week. Use of a shower chair and grab bars are a good idea if they are struggling in the tub or shower.
If the patient has to go out for the day, this requires a good plan. If they are on supplemental oxygen, they will need to take spare pre-filled tanks or the battery charger for their portable oxygen system. If they are on tanks, they will need to carry or roll them, this depends on the size cylinder they are utilizing. They will need to have back up tanks in the car or at the ready to replace an empty. Depending on the patient's liter flow, they may need to carry multiple tanks with them at all times and this usually requires assistance, a specialized cart or carry bag and the ability to change regulators from one tank to another. It is much more challenging if the patient has impaired dexterity, vision or cognition. Tanks can be heavy and rolling carts are difficult to pull up or down stairs. If a patient is already using a walk-aide (i.e.: cane/walker) carrying oxygen adds an additional burden. For any out-trip the patient will need more time to recover after walking or performing any exertional task. They may need to sit when shopping or utilize a wheelchair, scooter or walker to conserve energy.
For those who use a battery-operated portable oxygen system, their challenge is to be mindful of keeping the unit charged. Many systems use both domestic power sources as well as a 12-volt battery charger that can be used in a vehicle. Depending on the system they are using and their oxygen liter flow and their breath rate, they may get as little as an hour or as much as 5 hours from one charge. The battery life on these units is dependent on these factors (i.e.: the faster the patient is breathing, the more often the valve opens to deliver oxygen and this wears the battery down). Going out for lunch or dinner at a restaurant is often challenging for the COPD patient on oxygen. They need to have extra oxygen ready with them or sit where there is an electrical socket so that they can charge their battery-operated unit.
Traveling with oxygen can also be difficult for an oxygen-dependent patient. They will need permission from a physician to fly and they will need to contact the medical help desk for the airline that they are using to pre-arrange oxygen on board. Airlines do not allow your own pre-filled oxygen cylinders on an aircraft. A patient who is flying with oxygen will either have to rent tanks for the trip that the airline will provide (these are usually costly) or use a battery-operated portable system that is FAA approved. If using the battery-operated system, the patient will need to use only the battery in flight and normally will need to carry three times the battery power needed for the normal flight time (i.e.: if the flight is 2 hours, they will need 6 hours of battery life). Once they reach their destination, they will have needed to have pre-arranged having oxygen delivered to their hotel. This can be very challenging in some foreign countries and can be quite costly. So, as you can see, most, if not all activities have to be carefully planned for a COPD patient.
In between all of these activities, the patient will still need to take breathing treatments. If at home, most likely they are utilizing a nebulizer. If the patient is very active, they will most likely have an inhaler to take with them. Breathing medications are not the only medications this type of patient is on. Usually, they are on steroids, diuretics, insulin, cardiac medications, anti-anxiety medications, and the list goes on. Nighttime can be a difficult time for the COPD patient. They normally utilize several pillows to prop the head up so they can breathe more easily. They may also be using a PAP device at night to augment their breathing or because they have OSA and COPD.
COPD is a progressive and fatal disease. Avoiding COPD is pretty simple ...stop smoking or never even start. If you stop today, your lungs will start to heal immediately. Carbon monoxide, that is a byproduct of smoking, will begin to leave the body. The cilia (tiny hairs that line the airway) will begin to regenerate. This can take a number of months. The tar that is also a byproduct of smoking will take longer to eliminate. Withdrawal symptoms will last approximately 4 weeks (sometimes longer). But in the long term, this is a small price to pay to avoid becoming impaired or dependent on oxygen in the future. Unfortunately, depending on how much damage has been done to the lungs, some people who quit will still develop COPD.
Although we now have many wonderful oxygen systems to make the COPD patient’s life easier, it is still difficult to lead a “normal” life when you are always short of breath, tethered to oxygen and cannot do or enjoy some of the things you used to. If you, or someone you love is still smoking, seek professional assistance to quit, it’s never too late.
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My name is Laura Castricone and I am a Certified Respiratory Therapist. I have been practicing in the state of Connecticut since 1992. I have worked in several aspects of respiratory care ...
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