Taking Charge of Your Diagnosis
Going through the process to diagnose interstitial lung disease (ILD) can be frustrating. But by learning about these diseases and how they may progress over time, you can be better prepared to deal with the challenges ILDs bring.
What it Takes to Diagnose ILD
Diagnosing ILD often requires a physical examination, a review of your medical, social, occupational, and other history, and a variety of tests. These tests can help your healthcare provider rule out other diseases and pinpoint a diagnosis of ILD. Sometimes it can take several weeks to receive test results, so the earlier you and your healthcare provider can begin the testing process, the better. Information and tests your healthcare provider may use include:
Information
Medical history (past and present):- Medical procedures
- Prescribed and over-the-counter medications
- Potential environmental exposure
- Family medical history
Tests
- Blood tests
- Pulmonary function tests
- Chest x-rays (radiographs)
- A high-resolution CT scan (HRCT)
- A lung biopsy
- A bronchoscopy (examination of the airway)
What it Takes to Manage Your Chronic ILD with Worsening Fibrosis
ILD may cause scarring of the lungs (called pulmonary fibrosis) that gets worse, or progresses, over time. You may hear this referred to as having a chronic ILD with worsening fibrosis.
Once you’ve been diagnosed, you’ll want to read up on the management options for patients with
chronic ILD with worsening fibrosis or IPF, a common type of ILD, start monitoring and recording your symptoms, and prepare
questions for your healthcare provider. This will allow you and your medical team to better
design the right management program for you.
Talk with your healthcare provider about how frequently you should be examined, and what you can
do to best manage your disease.
Management Options
Each person living with chronic ILD with worsening fibrosis has unique needs depending on their medical history and other existing conditions. Therefore, your healthcare provider’s approach to managing your disease will be personalized to meet your specific needs. Management may include:
Lifestyle and therapeutic options
Pulmonary rehabilitation, oxygen therapy, and disciplined nutrition and other lifestyle changes might be part of your daily prescribed disease management plan.
Medical and surgical options
Some people may also be candidates for clinical trials. And for certain people, lung transplantation may be an option.
There Are Things You Can Do to Help Manage Your Chronic ILD with Worsening Fibrosis
1
Get informed and stay informed
Research, reach out, attend support programs, and connect with experts and online resources.
The more informed people with chronic ILD with worsening fibrosis are, the better they are able to manage the many
physical, emotional, and spiritual challenges they and their loved ones experience
throughout their journey.
2
Monitor and track your symptoms
Keeping in tune with your body daily is important. You will want to monitor for signs of
disease progression
and record changes in a whole host of symptoms, including: coughing, aches and pains,
and your mood, along with any symptoms or side effects you might experience in relation
to things like exercise, supplemental oxygen, and medication.
3
Know what to ask your healthcare provider
Begin a more meaningful conversation with your healthcare provider by coming prepared with questions
about chronic ILD with worsening fibrosis.
Conversation starters:
- What does chronic ILD with worsening fibrosis do to my lungs?
- Which diagnostic tests do you recommend?
- What are my options for managing the disease?
- Am I a candidate for supplemental oxygen?
- Am I a candidate for lung transplantation?
- Is a clinical trial right for me?
- How often should I have follow-up exams and tests?
4
Follow your healthcare provider’s plan
You and your healthcare provider can work together to create a course of action with your unique
situation in mind. By following a customized plan, you’ll be better prepared to deal
with chronic ILD with worsening fibrosis and the difficulties it brings. Learn more about creating your own
daily roadmap.
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You’re not alone in this—
we’re just a phone call away.
Life with ILD can feel overwhelming, but we’re here to help. Call Lungs&You® to speak with a dedicated nurse who can help you get the information you need to help take an active role in your health.*
Monday - Friday, 9 am - 6 pm ET
*Lungs&You® does not provide medical advice. Please consult with your healthcare provider if you have specific questions about your health.