The most common symptoms of ILD are shortness of breath, also known as dyspnea, as well as cough and fatigue. Many people describe dyspnea as a feeling of breathlessness.
Most frequently, shortness of breath appears insidiously, not abruptly. Usually, shortness of breath is first noticed during exertion or with strenuous activity. For example, early on, a person with ILD may notice shortness of breath only when running or exercising. Later in the course of ILD, he or she may notice shortness of breath when casually walking across the street or walking from room to room indoors.
Cough due to ILD is typically a dry and hacking cough. Fatigue or low energy is very common in people with ILD. People with systemic autoimmune or connective tissue disease may have muscle or joint aches, rash and other non-respiratory symptoms.
An Action Plan for ILD
Sometimes it is hard to know what to do when your symptoms change or worsen. Do you call your doctor? Go to the emergency room? Your health care provider can tell you what you can do when this happens. This is an Action Plan. Knowing when your symptoms are getting worse can help you and your health care provider decide what you should do in your home, at your health care provider’s office or in the emergency room.
A change or increase in the symptoms you usually have may be the only early warning sign. When your symptoms are getting worse, you may notice one or more of the following:
- An increase in shortness of breath or coughing
- A general feeling of ill health
- Feeling of lack of energy or fatigue
- Fever
Symptoms do not go away when they are ignored. Therefore, call your health care provider if you have new or worsening symptoms lasting longer than a day.
Talk with your caregiver and family members about symptoms and your Action Plan.
Advance Directive
As part of the action plan, talk with your health care provider, caregiver and family about treatment if you become seriously ill and unable to express your wishes. A written, legal document expressing your wishes is called an Advance Directive. This may include what medical decisions are made and who will make them if you are unable to respond or make your own decisions.
Palliative Care
Palliative care is an approach to care that focuses on the physical, emotional, social, intellectual and spiritual needs of people who have a serious illness. Palliative care is not the same as end-of-life care. Palliative care focuses on improving or maintaining quality of life through symptom relief; assessing tolerance for curative treatment; and easing transitions when curative treatment is no longer an option. Palliative care incorporates the hopes and values of patients and their family members.
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