How to Manage Chronic ILD with Worsening Fibrosis

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Making decisions about how to manage interstitial lung disease (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, including how it may progress over time, 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 healthcare provider about management options.

Understanding how ILD worsens
Learning about how ILD worsens, or progresses, can help you make important decisions about your care.
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Options for Managing Chronic ILD with Worsening Fibrosis

Below are some management options for chronic ILD with worsening fibrosis. Once you’ve discussed these options with your healthcare provider, you can work together to create a disease management plan that’s best for you.

Pulmonary rehabilitation

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 people with ILD 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

Oxygen therapy helps to supply additional oxygen to patients who have low oxygen levels. It may help reduce breathlessness, enabling the individual to perform physical activities, like pulmonary rehab exercises.

Lung transplant

Lung transplants may improve both life expectancy and physical function.

Palliative care

Palliative care is focused on managing symptoms and addressing the emotional, spiritual, physical, and social needs of those living with a serious illness like ILD.

Clinical trials

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 healthcare provider

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.

IMPORTANT REMINDERS ABOUT MANAGING CHRONIC ILD
WITH WORSENING FIBROSIS
Start a conversation about management options with your healthcare provider right away.

Once scarring occurs, it is believed to be 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.

Discuss options for a well-rounded management plan.

Although oxygen therapy and pulmonary rehab may help you to breathe easier, your ILD may still be progressing, which is why it’s important to work with your healthcare provider to create a well-rounded management plan.

Lung transplants may be an option for some people

A lung transplant is an option for some people with ILD, but not for everyone. Talk to your healthcare team for more information.

Creating a Disease Management Plan that Works for You

Find pulmonologists

The first step in creating a disease management plan is finding a specialist. Because chronic ILD with worsening fibrosis is rare, it is not well-known, even among some pulmonologists, who are healthcare providers specializing in lung disorders. That’s why it’s important to find a pulmonologist with the familiarity and expertise needed to manage chronic ILD with worsening fibrosis. Use our locator tool to find pulmonologists in your area.

Disease Management Plan

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 healthcare provider often. You can also contact a potential insurance provider to make sure they cover any medicines you are taking, supplemental oxygen, and pulmonary rehabilitation.

We know how lost you might feel while searching for answers about ILD and how it may progress over time, but we’re here to support you.
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