How to Help Manage Chronic ILD with Worsening Fibrosis
Making decisions about how to help 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 helping to manage 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 to help manage this type of ILD. If you have an ILD with inflammation, ask your healthcare provider about management options.
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Options for Helping to Manage 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 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 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.
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.
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.
WITH WORSENING FIBROSIS
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.
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.
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
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.
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.