What to Expect

An Interstitial Lung Disease (ILD) clinic is a specialized clinic within our Chest Clinic at Stanford that focuses on the care of patients with a variety of ILDs. Our physicians and nurses are specialized in the care of patients with ILDs and work with a network of other specialists at Stanford to provide comprehensive, compassionate, quality, state-of-the-art care.

What is an Interstitial Lung Disease Clinic?

An Interstitial Lung Disease (ILD) clinic is a specialized clinic within our Chest Clinic at Stanford that focuses on the care of patients with a variety of ILDs; another term used is Pulmonary Fibrosis or scarring of the lungs. The term ILD is very broad and includes a variety of disorders with inflammation or scarring of the lungs due to an exposure of some kind, an autoimmune disorder, or 'Idiopathic' or no known cause. Our physicians and nurses are specialized in the care of patients with ILDs and work with a network of other specialists at Stanford to provide comprehensive, compassionate, quality, state-of-the-art care.

How do I get an appointment as a new ILD patient?

If you would like to be seen as a new patient at the Stanford Interstitial Lung Disease (ILD) Clinic, please have your doctor fax a referral request and your records to our referral line at 650 320 9443.
View our referral form that includes a list of all of the requested records.
You may also send your own records, or contact our New Patient Coordinator at 650 725-7338. Please leave a message and we will contact you and discuss the next steps to get you an appointment with our ILD team.

What should I expect at my first visit?

Before your visit

Prior to your visit you will receive a confirmation letter with directions, time, and schedule for your initial visit. You will also receive a "New Patient Questionnaire" to complete and bring with you to your first visit.
Please plan ahead to allow for approximately 1.5 to 2 hours for your first visit to our ILD clinic. If you are also having testing on the same day, your time at our clinic will be longer.
Traffic can be heavy around the medical center so please make sure to allow plenty of time in order to check in at our Chest Clinic desk 15 minutes before your appointment time. Unfortunately, we are not currently offering valet parking service. There is an area at the front entrance to drop off patients. There is also a shuttle between the parking lot and the front entrance.
Before your visit we will obtain all of your necessary medical records, (including radiology images on a CD), and test results to review.
If you have any additional testing after we have communicated with you, please let us know what new testing was done and the location so that we can obtain testing results.
Please make sure to bring your insurance cards, photo ID, and a list of all of your medications (and doses) that you are currently taking.
If you are unable to make your appointment, please notify our New Patient Coordinator at 650 725 7061 at least 3 days in advance if possible, so that we may schedule other patients that are waiting for appointments.
Please note that if you are a "No Show" (no notice of cancellation), you will be offered our next available appointment which may be several months later.

During your visit

Our ILD team will complete a detailed initial evaluation by reviewing all of your records, taking a detailed medical history, and performing a physical exam. They will discuss your diagnosis and treatment plan. It may take a second visit to confirm your diagnosis if we feel that we need additional testing or information. Your case will also be presented at our weekly, multi-disciplinary ILD conference so that other experts’ input and opinions can be incorporated into confirming your diagnosis treatment plan.
We may ask you to:
- Repeat or update some testing such as breathing tests, a walking test, or a CT scan of the chest
- Have an echocardiogram to evaluate your heart function
- Obtain blood tests to check for autoimmune disease
- Obtain blood tests to determine if your particular ILD is genetic, or 'familial'
- Obtain blood tests to get baseline labs prior to initiating drug therapy
- Be evaluated for needing a lung biopsy to obtain lung tissue to confirm a diagnosis
- During this initial visit you may meet with our Nurse Coordinators, Physician Assistant, Pulmonary Fellow, and our ILD faculty physicians. You will receive a ‘New Patient Packet’ with additional ILD information and resources for you and your family.
- We may ask that you consent to having your clinic visit data included in our ILD Registry Database, or let you know of any clinical research trials for which you might be eligible. Our Clinical Research Coordinators are available to discuss clinical studies with you at the time of your clinic visits.
- When you check out of the clinic after your first visit, you will receive a written summary of instructions, any future testing or appointments, and your current medication list.

After your visit

Following your first visit with our ILD team, your case will be reviewed at our weekly ‘Multidisciplinary Discussion’ ILD Rounds when we have our pulmonary, rheumatology, pathology, radiology, lung transplant, and surgical physicians discuss your case in detail to come to a consensus on your diagnosis and treatment plan.
Your referring physician will receive a summary of our recommendations. Please also make sure you let us know any other of your physicians that you would like to receive a summary as well.

Frequently Asked Questions

Q. How soon can I expect to get an appointment?

A. We review every new patient with our physicians and staff to determine how urgent the request might be, and to make sure that this is the correct clinic for your referral. Sometimes we need to obtain the CD with your recent radiology CT scan images to help make that decision and that can take up to a week. We may call you and/or your referring MD to further discuss your case which helps us to know how soon you should be seen. Our ILD program receives referrals from around the United States; all patients information is carefully reviewed and traiged as to the acuity of the need for a visit with our ILD team. Some patients are seen in a few months and others in 2 days. We will always try to keep you informed as to where we are with your referral and appointment scheduling.

Q. Will I have to repeat a CT scan of my lungs?

A. It is possible that we may ask you to get a repeat CT scan. Possible reasons are that your scan was done using thick slices (5 mm) which does not give us a thin (1-2 mm) slice of the lung tissue so that we can make an accurate assessment of interstitial lung disease. Another reason for a repeat CT scan is that you may have had one done when your lung problem was first seen and you received medication after that scan to treat it; a repeat scan can help us assess if your lungs are improved, the same, or worse.

Q. Will I need to repeat any other testing?

A. In some cases, we may want current breathing tests (pulmonary function tests- PFTs) if they were done 3-6 months ago, or if your condition has changed. We may also want a current oxygen measurement during walking to determine if you have normal oxygen levels, or if you need oxygen, and if so, how much (liter flow) that you need.

Q. I live far away. Can I do any required testing where I live and have the results sent to you?

A. In some cases, yes this is fine, especially for breathing tests, oxygen tests, and some blood tests. However, we may request that your CT scan of the chest be done at Stanford where we can precisely order the views and techniques that we would like.

Q. Can I just bring all of my records with me to my first appointment?

A. No. We carefully review all of your medical records before your appointment so that we can maximize the time that you are here, and avoid having an incomplete review because we find that either a test result is missing, or that a test was done differently than we needed. In this way, we have as much information in advance as possible so that we can make accurate recommendations and a plan of treatment, if needed.

Q. Will my doctor(s) get a copy of the visit report?

A. Yes. When you check in we typically ask who your primary care physician is, and also who else you would like to receive a copy of the notes (cardiologist, local pulmonologist, etc...).

Q. Will I receive any written information at my visit?

A. Yes. At the time when you check into the clinic, you will be given an "ILD New Patient Packet" in a red folder that will include lots of educational and informational resources for you and your family. It will also contain contact information for our clinic staff.

Q. Can I bring family members or friends with me into the visit?

A. Yes. We encourage you to bring others with you, especially for this first visit, as a great deal of information will be reviewed and it is helpful to have another person there to listen. There may be added visitor restrictions because of COVID so please check with the clinic for updated visitor information.

Q. What if I need a wheelchair or oxygen during the visit?

A. There are wheelchairs available at the front entrance of the hospital and also assistance if you need help getting to our clinic in a wheelchair. If you need oxygen during the visit so you can save your portable oxygen supply, please just let us know when you check in and we will get it for you.

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