What to Do If You’ve Just Been Diagnosed
Being diagnosed with interstitial lung disease (ILD) (commonly called pulmonary fibrosis) can
turn your life upside down and force you to adjust your life goals. It is normal for people with
ILD to experience fear, worry, anxiety, and panic as they anticipate the decline in their
ability to function and a loss of independence. Many want to stop taking part in social
activities and some may experience a strain on their relationships. It’s important for you to
recognize that these are all normal feelings and that you must find ways to cope with them. Your
healthcare team may be able to get you the support you need.
The following is a list of some resources and practical tips to give some guidance to someone who has just been diagnosed with ILD:
Find out all you possibly can about ILD: The fact that you are here at this site means that you’ve already begun learning more about ILD. Of course, your primary source for information about ILD should always be your healthcare provider. He or she will give you information about the disease, help you understand how it may progress over time, and help you create a customized plan just for you. Other sources, both online and offline (such as support group meetings), can give you even more information. The more aware you become of ILD, the more of a role you can play in your own care.
Find a pulmonologist with ILD experience: Pulmonologists are experts in the lungs and lung diseases. They are the type of specialist who may be best equipped to help your ILD symptoms. Not all pulmonologists are experts in ILD, however, so you may want to seek out pulmonologists who have experience managing ILD.
Ask about ILD referral centers: Another option to consider is ILD referral
centers. These are medical centers that specialize in managing ILD. There are
many located throughout the country, so you should ask your healthcare provider
if there is
one near where you live.
The Pulmonary Fibrosis Foundation has put together a list of members of their Care Center Network available at the Medical Centers Specializing in PF Care page at PulmonaryFibrosis.org.
Reach out to support communities: There are a number of support communities that you can join for free. These allow you to connect with other people who may be able to relate to what you’re going through and who may have helpful tips on meeting the day-to-day challenges of living with ILD. Learn about online support groups.
Talk to family and friends about ILD: As with other serious diseases, many people living with ILD find that they can turn to their family and friends for support and help in facing the daily challenges of living with ILD. Of course, every family is different, and it may take some time for you to figure out who to turn to and how much you can expect them to help.
Contact the Lungs&You® Call Center:* You can call this hotline to speak with a dedicated nurse who can answer questions about ILD, help you understand your diagnosis and how it may progress, or simply offer a listening ear. Call 1-844-473-2638 Monday through Friday from 9 am to 6 pm to connect with someone who’s ready to help. They can also mail you additional educational materials to help you better understand your diagnosis and what to expect going forward.
*Lungs&You® does not provide medical advice. Please consult with your healthcare provider if you have specific questions about your health.
Use video calls to stay in touch with loved ones near and far. You can get training on how to use these apps if needed by speaking to support groups and local ILD charities.