Living with COPD
Lung function and age play a very important role in establishing the prognosis. However, more information is required in order to establish a more individualised prognosis, as well as multi-dimensional assessments, such as those taken into account in the BODE index; weight (body mass index), the degree of obstruction, the feeling of breathlessness (dyspnoea), and exercise capacity.
The frequency and severity of the decompensations have a very important role in the prognosis, as it leads to a worsening of the clinical situation, as well as due to the risk during the periods of exacerbations.
Some recommendations that help patients live with COPD are the following:
Give up smoking. It is the starting point and cornerstone of COPD treatment. Giving up smoking is the only way to slow down the progression of the disease, regardless of how long ago the diagnosis was made and the severity of the COPD. The sooner you give up smoking the greater is the benefit.
Irritant substances. Certain elements that are in the air that we breathe can cause irritation in the bronchial tree. It is almost impossible to avoid all irritant substances, but it is important to try to avoid environments contaminated with tobacco smoke, sprays, paints and solvents, dust, gases and traffic contamination, domestic animal hair, insecticides, lacquers, strong air fresheners and perfumes.
Climate. Cold and changes in temperature can be a problem for people with COPD. All the rooms of the home should be maintained at the same temperature between 19˚C and 21˚C.
Heating. Some heating systems can dry the air and the dry atmosphere can affect some individuals with COPD. It is advised to maintain a humid environment of 45%. Excessive humidity in the home can also be a problem for those with COPD. Mould, dust, mites and bacteria depend on the humidity in order to develop and can cause respiratory irritation.
Diet. It is important to maintain a healthy and balanced diet. Maintain an appropriate weight, both overweight and excessively thin or malnourishment have an unfavourable influence on the progression of the disease.
Drinking abundant liquids helps to keep the respiratory tract clean or with less dense mucous. The best drink is water, with a quantity of approximately 1.5 litres per day being necessary.
It also important to prevent constipation, therefore it is advised to follow a diet rich in fruit and vegetables and increase the consumption of wholemeal cereals.
Vaccines. Each year, except by medical contraindication, the vaccine should be administered against influenza, as this can cause worsening of the disease. Although the vaccine does not preventing catching the flu, at least it is less severe.
Apart from this vaccine, it is also advised to have a pneumococcal vaccine every 5 years, if over 65 years-old, in order to be protected against a type of pneumonia.
Both vaccines can be given together.
Exercise. With COPD, it is likely that you do not to want to perform exercises for fear that it may trigger more breathlessness or cause some damage. The problem is if no activity is practised, physical shape is lost and the muscles become weak, which can have an effect on daily activities.
In this sense, it is advised to take regular exercise in order to improve the symptoms of breathlessness and fatigue, as well as to strengthen the arms, legs, trunk, the heart and physical shape in general.
The exercise recommended will vary depending on the situation, preferences, and symptoms of each patient. In general activities such as walking, swimming, riding a bicycle or static cycling, conveyer belt, dancing, etc., can be practised.
Before starting any type of activity or exercise program, you should talk to the health professional about the most suitable type of exercise.
To feel breathless or short of breath during exercise is normal, as breathing will return to normal after stopping the activity. With time, and if you practice regularly, this feeling will decrease and you will have more tolerance on exertion.
It is important to keep to your own rhythm on exercising, and if you reach a stage in which you are too breathless to speak, then decrease it or have a short rest.
Sexuality and relationships. On occasions, patients with COPD may feel that is better to avoid sexual relationships as it may be too “dangerous” for their health. However, these relationships, like the other physical activities, are not dangerous for respiratory disease. It should be known that small increases in heart and respiration rates are normal during this activity, without being dangerous.
However, it is recommended to take some advice into account when maintaining sexual relationships:
- Avoid them after a heavy meal.
- Have a room ready with a suitable temperature.
- Start with a period rest beforehand and practice breathing and relaxation exercises, as well as bronchial hygiene.
- Use rescue medication if required, before and after the event.
- Control breathing as if you were carrying out any other physical activity, and stop and rest, if required.
- Choose a comfortable position that does not make it difficult to breathe or involves excessive exertion, and avoid pressure on the chest (for example, lie on your side, or in positions in which your partner assumes a more active role).
You should remember that the relationships with a partner are not based exclusively on sexual relationships, but also on other essential aspects such as communication, intimacy, affection, support and to feel loved by the partner.
Finally, it has to be taken into account that some drugs can have a negative effect on sexual desire. In this sense, it is recommended to talk to the doctor to find out if the treatment causes this side effect.
Sleep. Many people with COPD have difficulties in breathing during the night due to a decrease of oxygen in the blood. It also causes as decrease in the cough reflex, which leads to retaining bronchial secretions.
- If you wake up with a feeling of breathlessness, sit on the edge of the bed and lean forward.
- Leave medication near to the bed, in case it is needed.
- Sleep a little more supported in bed.
COPD, together with other factors, such as obesity, smoking, and alcohol consumption, among other things can, in some people, lead to a sleep disorder called Sleep Apnoea-Hypopnoea Syndrome (SAHS).
This can produce symptoms such as excessive drowsiness during the day (the individual falls asleep involuntarily and when carrying out usual activities), a feeling of not having rested during the night, snoring, morning headaches, irritability, attention and memory problems. If you have any of these symptoms it is advised to consult the chest disease specialist.
Oxygen therapy. COPD can occasionally lead to the lungs having difficulty in capturing the oxygen of the air and transporting it to the blood, which then leads to having low oxygen levels in the blood (chronic respiratory failure). The levels of oxygen in the blood are measured by means of arterial blood gases.
Oxygen therapy is a treatment that enriches the air that is breathed with supplementary oxygen. In this way a suitable concentration of oxygen for the body can be obtained. However, this does not mean that the breathlessness and fatigue is eliminated.
Patients with COPD who have home oxygen prescribed must use it a minimum of 15 hours per day (after meals, before any exertion, when they are at home and always during the night). To use it less than 15 hours does not provide any therapeutic benefit. If you feel breathless (dyspnoea) it must be used for the whole day. The amount to take will be indicated by the medical team, since it could be harmful if you do not receive an adequate amount of oxygen.
The oxygen can be supplied in several ways: with oxygen cylinders, with a concentrator and a portable concentrator and with liquid oxygen.
The most common forms of administration are nasal cannulas or nasal glasses. Nasal glasses, masks, and adapters must be kept clean, and changed at least once a month or before if they harden. The adapters must be checked for leaks. Once the oxygen equipment is operating, place the two orifices of the nasal glasses in a glass of water and see if there are bubbles to make sure the oxygen is arriving.
- Do not smoke. Relatives (or anyone else) cannot smoke in the presence of the patient with oxygen.
- Do not place the oxygen source near heat sources (kitchen, ovens, electrical apparatus, etc.).
- Wash the nasal cannula tubes every day, change them every month or before if they harden. In any case you can ask the company that supplies them.
- Maintain the adapters with a suitable connection (supplied by the company) without extensions.
- Use oxygen during exertion.
- Home oxygen therapy does not need humidifying.
- Make sure there is always oxygen in the tanks and the battery charged in the portable equipment.
Leisure and travel. To have COPD does not mean giving up leisure or travel. For this reason it is advised to maintain relationships and interest in carrying out leisure and social activities, as well as sharing these activities with other people, like going to relaxation classes, listen to music, or travel.
Although the patient with COPD can travel, some precautions must be taken into account.
- Plan the journey in advance.
- Take into account the altitude of the place that you wish to go. Altitudes higher than 1500 metres are not advised.
- Choose a time of year when the temperatures are mild.
- Carry your medication in your hand luggage.
- Do not forget the updated medical report that includes all the medication.
- Avoid being burdened with heavy luggage.
- If you have to travel in an aeroplane you must consult with your health team.
- If you take oxygen you must remember:
- To consult with the health team on needs during the journey.
- Contact the supplier of the oxygen equipment. It is recommended to get in touch with the supplier a few weeks before embarking on the journey so that you are informed on complying with the regulations as regards the use of oxygen equipment.
- If you travel by car, train, or boat, always keep the equipment in a vertical position.
- If you travel in an aeroplane and oxygen is needed during the flight, in the majority of cases it is possible to use a portable oxygen concentrator that operates with a battery and complies with the current legal regulations. The airline company must be advised and be informed of the specific requirements of each company.
The term "comorbidity" refers to the presence of two or more simultaneous diseases in the same person. The comorbidities of COPD may be as a consequence of the respiratory that affects the whole body (restriction of oxygenation in all the tissues) or due to the direct impact of common triggering factors: smoking affects the airways at the same time that it increases cardiovascular risk.
Among the most common morbidities, are highlighted:
- Ischaemic heart disease. It is associated with smoking.
- Osteoporosis. It is more common in smokers.
- Diabetes. The presence of diabetes is significantly higher in patients with COPD than in the general population.
- Sleep disorders. The prevalence is similar to the general population, but the risk is higher in patients with COPD.
- Gastroduodenal reflux. It is more common in patients with COPD, and some studies associate it with cough and with a higher risk of decompensations.
- Anxiety and depression. They are common in COPD and are undervalued.
Information for the carer or the people that live with the patient
Living with COPD can involve difficult times in the family environment and on occasions, significant changes in normal and leisure activities may need to be faced.
People with COPD must try to maintain a good family climate. This can be helped by sharing their fears and feelings about the diseases with them, as it should not be the responsibility of your carer.
Some useful advice for the carer:
- Over-protection. Try not to be over-protective, as it can make the patient feel like an invalid.
- Try to be positive. There will be bad days; but don’t be discouraged.
- Search for information about COPD. A useful resource are patient associations.
- Seek advice. If you think that you need some type of support, it is recommended to contact a social worker in your health centre.
- Take time for yourself. Do things that help stop thinking of the disease. Take a rest with some leisure activity, outside the home.
Occasionally the symptoms of COPD can suddenly get worse and stay that way, more than its daily variation. This is called decompensation, technically more known as exacerbation of acute exacerbation.
Decompensations, among other factors, may be caused by a respiratory infection due to a virus and/ or bacteria, due to high levels of air contamination, or by stopping the treatment.
If you have already suffered a decompensation before, a note should be taken of the “pattern” of the symptoms. Each person has slightly different symptoms. Therefore, it is advised to note the colour and quantity of sputum every day.
Recognising the first symptoms helps to prevent a severe attack and even hospital admission.
Decompensation alarm signs:
- Greater difficulty in breathing than usual, both in activity and at rest.
- Changes in colour and quantity of mucous.
- More coughing than usual.
- Cold symptoms, such as runny nose, sore throat, muscle pain, shivering, fever or feverish.
- Mental confusion or excessive drowsiness.
- Appearance of swelling of the legs (oedema in the feet).
- Appearance of pain (particularly rib).
What should I know about decompensations?
- The majority of decompensations can be treated as an outpatient.
- Decompensations worsen the quality of life.
- If there are multiple decompensations, a personalised plan of action should be available in order to help decrease them and treat them rapidly.
- Not having other diseases “well-controlled” can contribute to worsening the decompensation.
- Hospital admissions in COPD worsen the quality of life. Hospital admission must only be made when necessary.
- Make proper and responsible use of the health services.
How do I prevent decompensations?
- Do not smoke.
- Maintain a healthy and wholesome lifestyle.
- Take the treatment every day.
- Get vaccinated every year.
- Perform daily exercise.
- Control the “other diseases”.
What do I do in the event of a decompensation?
If you note an increase in breathlessness, don’t be alarmed and do the following:
- Make sure that you have taken your usual medication.
- Take the rescue medication without going over the limits indicated.
- Reduce physical activity. Remain calm at home.
- Try to perform the relaxation techniques and control breathing.
- Check your temperature using a thermometer.
- If you take oxygen, use it all day, without increasing the amount prescribed.
- If the doctor has provided an action plan for these cases, start it.
- If you have an increase and/or a change o colour of sputum:
- Increase the amount of fluids ingested (drink more water).
- Carry out secretion drainage exercises.
- If the feet and legs are swollen (appearance of oedema):
- Reduce intake of fluids.
- Raise your feet.
- Check the colour of your legs.
- If there is pain (especially, around the ribs):
- Go to the doctor and explain the type of pain. If it is uncontrollable, go to the Emergency Department.
When should I seek health assistance?
If the symptoms don’t improve:
- You have a fever of over 38˚C.
- Increased swelling in ankles or legs.
- Pain in chest.
- Sleepier than usual.
Breathing means life, but when there is a respiratory disorder, this, which is something natural, is made difficult.
Some recommendations to alleviate the feeling of breathlessness (dyspnoea):
Lie down, to help you relax more and breathe as slowly and as calmly as possible. If necessary, you can place pillows under your head. Repeat these exercises as many times as you are comfortable doing them.
- Lie down, place the palms of the hands fully relaxed on the abdomen. Breath calmly through the nose, expand the abdomen (where your hands are) at the same time. Hold breath for 1 or 2 seconds and let out the air slowly through the mouth with the lips pursed (try to let out all the air).
- Lie down, place the hands on the last ribs near the waist. Breathe in calmly through the nose so as to expand the ribs (where your hands are). Hold the air for 1 or 2 seconds, and with the lips pursed, slowly let out the air through the mouth until there is no more left: note that the ribs deflate.
The following exercises should be performed seated on a chair, with your back straight and legs slightly apart.
- Place your hands on your knees, breathe in through the nose and, at the same time, lift your arms forming a “V” with them. Breathe out through the mouth with the lips pursed and slowly lower the arms until returning to place the hands on the knees again. Repeat the exercise several times.
- Place the right hand on the right shoulder doubling the elbow. While letting out air with the lips pursed, lower the trunk until supporting the elbow on the left knee. On breathing in through the nose, lift the elbow upwards and backwards. Repeat the exercise several times with the right arm. After a rest, do the same with the left arm.
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