Living With Pneumoconiosis
Pneumoconiosis is different for every person. Some patients have very mild disease that is stable (does not get worse and worse over time). Other people have more severe disease, or disease that gets much worse over time. Because there is no cure, living with pneumoconiosis involves taking the best care of your lungs and your general health as you can and following up regularly with your health-care provider to manage your symptoms, to monitor you for worsening of your lung function and to watch for other diseases that can develop in patients who have pneumoconiosis.
What to Expect
If you have pneumoconiosis, you should expect to have regular visits to your health-care provider(s). You may need to have regular testing, such as pulmonary function tests ("breathing tests") or chest X-rays to monitor you and your disease closely. You should have a flu shot every year, and you should ask your health-care provider about pneumonia vaccines. People with silicosis should expect a tuberculosis skin test to make sure tuberculosis hasn't started growing in your lung also.
Taking care of your heart and lungs is one of the most important things you can do for your health if you are living with pneumoconiosis. This means not smoking and avoiding secondhand smoke. You should also avoid any further exposure to harmful dusts. Keeping your weight in a healthy range and exercising regularly helps with symptoms of breathlessness. For people with more severe breathing symptoms, exercising may be difficult, and a pulmonary rehabilitation program can be helpful.
People with pneumoconiosis can have a higher risk of developing some other diseases. Your health-care provider may need to watch for these. For instance, patients with asbestosis are at higher risk of developing lung cancer. This risk is especially high if the patient has been a cigarette smoker. One lung cancer that is related to asbestos exposure but not to cigarette smoking is called mesothelioma. Mesothelioma is rare compared to other types of lung cancer, but asbestos exposure is its only known cause. Your health-care provider may ask you to have a chest X-ray or chest CT scan to check for lung cancer.
Patients with silicosis are at a higher risk of developing tuberculosis. Your health-care provider may do a skin test or a blood test to see if you have been exposed to tuberculosis in the past, or they may ask you about other risk factors for tuberculosis. If you have been exposed to tuberculosis in the past and are carrying the tuberculosis bacteria (latent tuberculosis infection), it may be recommended that you take antibiotics to help prevent you from getting active tuberculosis.
Patients with silicosis are also at higher risk of developing rheumatoid arthritis, a form of arthritis in which the body's immune system attacks the joints causing pain, swelling and stiffness. People with silicosis who develop certain symptoms or signs of arthritis may need blood tests or other evaluation to check for rheumatoid arthritis. Patients with rheumatoid arthritis often need special medications to control the symptoms of their arthritis.
Patients with CWP may also be at an increased risk of tuberculosis or rheumatoid arthritis since coal dust can be contaminated with silica.
If you are diagnosed with pneumoconiosis, you may be entitled to workers' compensation. Contact your state workers' compensation board for more information about how to file a claim.
The Lung Association recommends patients and caregivers join our Living with Lung Disease Support Community to connect with others facing this disease. You can also call the Lung Association's Lung HelpLine at 1-800-LUNGUSA to talk to a trained respiratory professional who can help answer your questions and connect you with additional support.
Ask your healthcare provider about lung disease support groups in your area, or look online for a Better Breathers Club near you.