Introduction

For many people, receiving a diagnosis of an interstitial lung disease is shocking.  First off, you are not alone. Many of our patients report that they have many unanswered questions and want to learn more and feel there is a need for more information about interstitial lung disease.  They also tell us they want to meet others who have the disease.  With time, people say, their needs change, and they want to learn more about living with interstitial lung disease.

This educational series is intended to inform patients with ILD and their loved ones on topics ranging the initial diagnosis, to living with ILD to advanced states of the disease.  It also is intended to provide you with further reading and resources, all so that you can make informed, realistic decisions about your treatment and your life.

During and after your visit

It is easy to get overwhelmed by the amount of information you receive during your visit. Here are some tips patients have shared with us that you may find helpful during and after your visit.

1. Write down the questions you have to ask during your visit. The Pulmonary Fibrosis Foundation has developed a very useful one-page document with some questions to get you started. Print it out and bring it with you to your appointment.

2. Bring a friend or family member with you to your visit to help take notes and ask questions.  Many have found this helpful to keep organized. ***Due to COVID, UCSF facilities' visitor policies are changing often to help minimize the spread of the virus.  Check the UCSF website on the most up-to-date guidance around bringing visitors with you to your appointments.

3. Ask to meet with our ILD nurse or nurse practitioner for additional education and to review the next steps following your visit.

4. If you are in need of additional psychosocial support (anxiety, stress, depression, etc.), ask to meet with our social worker or join our ILD support group (information provided in the left-hand panel).

5. Use the internet carefully when researching about ILD online. Much of the information may be outdated and/or produced or not reviewed by ILD experts. A good place to start is the Pulmonary Fibrosis Foundation's website which has a very comprehensive, centralized place for high-quality educational resources, advocacy issues, and the latest updates in research and clinical trials.

6. Sign up for MyChart - this is the fastest way to get in touch with the provider's office for any questions you may have in between your appointments. (*This should not, however, be used in times of a health emergency

We are in this together! 

Hear from some of our ILD faculty about our program: