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Maintain Control While Living with ILD

Article co-authored by

Kim Kuebler

Dr. Kim Kuebler, DNP, APRN, ANP-BC
CEO Advanced Disease Concepts LLC and Director/Founder of the Multiple Chronic Conditions Resource Center

Lanier O'Hare

Lanier O’Hare, MSN, CRNP
Nurse Practitioner - Sarcoidosis and ILD Clinics
Interstitial Lung Disease Program
Department of Medicine
University of Alabama at Birmingham

Receiving a diagnosis of chronic interstitial lung disease (ILD) with worsening fibrosis can be overwhelming. Understanding your disease and the associated symptoms will provide you with the tools to effectively communicate with your healthcare team, thereby promoting your well-being.

Three Pillars of Disease Management

Your healthcare team can help manage your chronic ILD with worsening fibrosis in three important ways : disease management, education and planning, and symptom management (also called palliative (PAL-ee-uh-tiv) care).

Disease Managment

Disease management comes from a healthcare team-based comprehensive approach to managing chronic ILD with worsening fibrosis and its symptoms. Disease management may include pulmonary rehabilitation, supplemental oxygen, and more, along with managing any other health problems you may have. Ongoing communication with your healthcare team (healthcare providers, nurses, social worker, pharmacist, etc.) is important to ensure you’re getting the appropriate care at all times.

Education and Planning

Education and planning comes from the partnership you establish with your healthcare team. Understanding important information about the disease, common symptoms, and disease progression (the worsening of a disease over time) and calling your healthcare team/provider with any worsening symptoms may minimize unnecessary complications and maintain control over your care. Together, these strategies may help ease your emotional concerns.

Symptom Management

Symptom management, or palliative care, is an important component of living well with the disease. Equipping yourself with the understanding and knowledge of disease management and relying on the education and planning about your condition allow you to recognize and report early signs and symptoms to your healthcare team. Early and prompt symptom management may reduce the impact of the disease progression and disability, and it is key in maintaining control of your care, which may enable you to engage in meaningful and important activities.

The three pillars of disease management (disease management, education and planning, and symptom management) are most effective when used together.

Once you receive a confirmed diagnosis of chronic ILD with worsening fibrosis, your healthcare team will provide additional information about the disease, common symptoms, and disease progression. Together with your healthcare team, you can develop an individualized care plan. Being an active participant in developing your care plan together with your healthcare team allows you to maintain control of your care.

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