Making decisions about how to manage ILD can leave you feeling overwhelmed with emotion. We want to help you not only process these emotions, but also understand the facts around managing ILD so you can make informed decisions.
ILD can affect the lungs primarily by inflammation, scarring, or a mix of both. On this page, you’ll find information about ILD that scars the lungs and continues to get worse over time (which may be referred to as a chronic ILD with worsening fibrosis) and your options for managing this type of ILD. If you have an ILD with inflammation, ask your doctor about management options.
Understanding Chronic ILD with Worsening Fibrosis
Before deciding how best to manage chronic ILD with worsening fibrosis, it’s important to understand how it may affect your lungs. Chronic ILD with worsening fibrosis means there is irreversible scarring of the lungs (called pulmonary fibrosis) that may continue to get worse over time.
With scarring, the lungs become thick and stiff. This damage to the lungs is often irreversible and permanently affects the lungs’ ability to function normally.
What does this mean for your day-to-day life and how you feel?
Breathing will become difficult, making even simple, everyday tasks, like walking or getting dressed, a challenge.
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Learn about IPF progression
Options for Managing Chronic ILD with
Below are some management options for chronic ILD with worsening fibrosis. Once you've assessed your options, you and your doctor can work together to create a disease management plan that's best for you.
Pulmonary rehab includes a range of conditioning and breathing exercises, as well as lifestyle education, like how to manage stress and nutritional counseling. The goal is to help patients understand their breathing, function to the best of their ability, and increase strength and endurance. Pulmonary rehab should be started right away for those who are eligible.
Oxygen therapy helps to supply additional oxygen to patients who have low oxygen levels. It may help reduce breathlessness, enabling the patient to perform physical activities, like pulmonary rehab exercises.
Lung transplants may improve both life expectancy and quality of life.
Taking part in clinical trials may be an option for some people with ILD. Talk with your healthcare team about your condition and your options.
Learn about another management option
There is another option for managing chronic ILD with worsening fibrosis.Get more information
Discuss with your doctor
Be sure to discuss all your management options with your pulmonologist. By working together, you and your pulmonologist can find a management plan that works for you.
WITH WORSENING FIBROSIS
Start a conversation about management options with your doctor right away.
Once scarring occurs, it is often irreversible. The worse the scarring becomes, the harder it will be to breathe. That’s why it’s important to have a conversation about your management options early.
Even if pulmonary rehab and oxygen therapy help you feel better, ILD may still be progressing.
Although oxygen therapy and pulmonary rehab may help you to breathe easier, lung scarring could still be worsening, which is why it’s important to work with your doctor to create a well-rounded management plan that may include pulmonary rehab, oxygen therapy, and other management options.
Lung transplants are not an option for everyone.
Lung transplants are reserved for patients who have no other significant health problems, such as cancer; heart, liver, or kidney disease; or chronic infection, among others. For those with IPF, a common type of ILD, only about 2.6% of patients are candidates for the lung transplant waitlist. Therefore, it’s important to consider other management options for ILD as well.
Creating a Disease Management Plan that
Works for You
The first step in creating a disease management plan is finding a specialist. ILD is not commonly seen. That’s why it’s important to find a specialist with the familiarity and expertise needed to manage ILD. Pulmonologists are doctors who are likely to have experience diagnosing and managing ILD. Use our locator tool to find a pulmonologist in your area.
Advocate for yourself
After being diagnosed with ILD, it’s important that you feel empowered to advocate for yourself when working with your healthcare team. The more open and honest you are about your goals and needs, the better equipped your team will be to find a management plan that works for you.
Choose the right insurance plan
If you’re in a position to choose a new insurance plan, you may want to consider choosing a plan with higher premiums and lower copays if you take any medications or visit your doctor often. You can also contact a potential insurance provider to make sure they cover any medicines you are taking, supplemental oxygen, and pulmonary rehabilitation.
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 understand what you’re going through.