COPD, a serious lung disease that makes breathing increasingly difficult, not only threatens health and social contacts, but sometimes forces people to lose personal independence. After all, when the COPD patient has reached the point where help needs to be called for with eating or showering, he also loses part of his personality by losing his independence.
Symptoms and diagnosis
The first symptoms of COPD usually occur after the age of forty. However, the diagnosis of COPD is often diagnosed at a much later age. As an example, three cases of people where this has happened:
- A lady went to the doctor for the first time with lung complaints when she was 44 years old. There was a lot of mucus on her lungs and she was coughing all day long. The doctor prescribed her an inhaler and advised her to stop smoking. When she was 55 years old, she developed a lot of pain in her chest and immediately went to the doctor. Shortly afterwards the diagnosis came: COPD with a lung capacity of only 22 percent. Six weeks later she had to be provided with oxygen, a stair lift and a mobility scooter;
- A gentleman was used to smoking about twenty cigarettes a day from the age of 18. He had also stood in a smoky café for thirteen years. Around the age of 40, he realized that he had not been feeling well for years and was afraid that he might have lung cancer. That fear prevented him from requesting an investigation. Eventually he went to the doctor and had a lung examination. The result was: COPD with a lung capacity of only 19 percent. The treating lung specialist gave him a clear message: “If you continue smoking, you will be dead within six months.” He immediately stopped smoking;
- Another lady was diagnosed with COPD when she was 44 years old. The disease has changed her life greatly. The always busy woman gradually had to give up many things. Because she no longer worked at a certain point and will probably be rejected, she has a lot of free time. Time that her friends and acquaintances do not share with her, because their lives go on and they have so much to do. This woman experiences COPD mainly as a disease that makes her lonely.
Remark
The Asthma Fund, which fights lung diseases, subsidizes various studies. One of these is research into the role of the female hormone estrogen. It has been found that more and more women are being diagnosed with COPD. It seems that women are more sensitive to tobacco smoke. If this turns out to be the case, it may lead to adapted treatment for women with COPD.
The gradient
COPD often starts with an innocent cough. However, the disease – with irreversible damage to the lungs – is incurable and lung function continues to deteriorate. As a result, COPD patients are increasingly short of breath. Physical activities require more and more strength and energy. Climbing stairs feels like climbing a mountain, getting dressed takes more effort each time and working eventually becomes impossible. When COPD patients are still in the labor process, it takes more and more energy for them to go to work. The number of times they have to cancel due to their illness is gradually increasing. The majority of COPD patients always have oxygen with them. Some even depend on extra oxygen and a mobility scooter twenty-four hours a day. There are patients who encounter problems when requesting, supplying and reimbursement for the extra oxygen they need to use. The Asthma Fund makes an inventory of all these complaints and brings them to the attention of health insurers and oxygen suppliers.
Despite all the problems, many – after hearing the diagnosis – do everything they can to stay as fit as possible. Research has shown that people with moderate lung disease improve greatly when they receive rehabilitation in their own home. Such a rehabilitation program pays a lot of attention to exercise, nutrition, quitting smoking and dealing with a sudden worsening of the complaints. In addition, the treatment also appears to be cost-effective.
Moreover, it appears that there is a link between COPD and cardiovascular disease, because both diseases often occur simultaneously. With the support of the Asthma Fund , scientists and researchers are developing a treatment that is expected to inhibit the development of COPD as well as arteriosclerosis (and therefore cardiovascular disease).
Projects
The Asthma Fund aims to help COPD patients deal with their disease as best as possible, including by improving the care and lives of these patients and by subsidizing projects that contribute to this. Projects such as:
- The COPD standard of care . This standard describes what doctors and insurers must adhere to when caring for COPD. A patient version has also been published, so that patients also know what they can expect from their treatment and what they can do themselves for the best care;
- The lung care meter . This care meter should lead to better cooperation between healthcare provider and patient. The lung care meter is a website on which anyone with an incurable lung disease can leave a rating about the care they receive from their healthcare provider. Healthcare providers can use this data to improve their care or continue with the chosen approach;
- Complaints inventory . The purpose of the inventory of complaints regarding the request, delivery and reimbursement of additional oxygen is to bring this to the attention of health insurers and oxygen suppliers;
- Encouraging movement . Because research has shown that exercise is very important for lung patients, the Asthma Fund, together with the GP’s practice assistant, tries to encourage people with an incurable lung disease to exercise more;
- LongPoint . LongPunt is an accessible, monthly meeting place for lung patients, their partners, informal caregivers, family, healthcare providers and other interested parties. The aim is to achieve 15 to 20 such LongPoints.
COPD in the Netherlands
More than 320,000 people in the Netherlands have been diagnosed with COPD. It is estimated that another 300,000 or so people are at very high risk of COPD without even knowing it. Anyone aged 40 or older who occasionally coughs or is short of breath should complete the COPD risk test and thus find out whether there is a possible risk of COPD. In addition, if someone with complaints goes to the doctor in time, worse symptoms can possibly be prevented.