Wednesday, August 9, 2017

New Research Study for PF families

Hi everyone. The National Institutes of Health has funded our Families At-Risk for Interstitial Lung Disease (FAR-ILD) Study! We are actively enrolling men and women age 40 and older whose parent or sibling has been diagnosed with pulmonary fibrosis. If you agree to enroll, you will have to make at least 1 visit to our research center at Columbia University Medical Center in Manhattan. You can bring your family member with PF if they are also interested in being a part of the study (no free testing for them, but they can contribute blood samples). If you enroll, you will undergo a number of tests, including a free CAT scan of the chest so we can look at your lungs. 

If you are interested in learning more about the study, please give us a call at 212-342-1518, or send us an email at or, visit our website

Wednesday, August 2, 2017

What’s new in pulmonary fibrosis?

It’s been a while since I posted here. Work & life…

Thought I would give an update on what’s new in the world of pulmonary fibrosis:

1. I posted earlier this week that the PFF is holding its Summit meeting in Nashville in November. All are welcome! go to to learn more and register.

2. Two studies have now suggested that drugs approved in many parts of the world to treat IPF (nintedanib and pirfenidone) may reduce the risk of respiratory problems requiring hospitalization in people living with IPF: and

3. Did you know that current medical guidelines recommend the use of antacids to treat IPF? At the time these guidelines were issued in 2015, this recommend was somewhat controversial, and now newer evidence suggests that antacids are linked to worse outcomes in IPF in some cases. A recent publication in a medical journal describes the issue in great detail:

4. My research group has recently published a paper linking sleep apnea to early stages of interstitial lung disease. This is far from definitive proof that sleep apnea contributes to interstitial lung disease or PF, but it is suggestive enough that we are pursuing more research in this area.

5. For those of you who are putting off exercise, a recent study suggests that exercise in pulmonary rehabilitation benefits people living with interstitial lung disease:

I’ll try to post more frequently as time allows.


Sunday, July 30, 2017

Pulmonary Fibrosis Foundation Summit 2017: Nashville!

The Pulmonary Fibrosis Foundation will be holding its 4rd Summit in Nashville from November 9-11, 2017. I am planning on being there along with many other health care professionals and scientists who are passionate about raising awareness and finding a cure for PF. If you are a patient with PF or if someone you love has PF, I strongly encourage you to attend the Summit. You will have the opportunity to meet doctors, scientists, and other patients and caregivers. Many sessions are planned just for patients and caregivers. You can learn more about the Summit at

I hope to see you there!

Tuesday, December 6, 2016

Your PF Story

Many of you have emailed me or reached out through social media to share your PF story or the story of a loved one. There seem to be many common themes: why did my loved one go undiagnosed for so long? is it IPF or something else? what treatments are available?, and many others.

If you wish, please share your story in the comments section below. And please respond when others post their story -- perhaps we can all learn from each other.


Friday, October 14, 2016

Pulmonary Fibrosis Education Session for Patient, Caregivers, and Health Care Professionals in NYC

Hi Everyone,

Just a quick note to let you know that we are holding an educational session on Saturday, November, 5, 2016 from 8:30am to 1pm at Columbia University Medical Center (50 Haven Avenue in Manhattan).

Click HERE for more information and the registration form. We would love to see you there!!

Dave Lederer

Monday, May 2, 2016

What could have caused my Pulmonary Fibrosis?

I have noticed that many people living with PF are frustrated by the scientific and medical community's lack of understanding about the causes of PF. I thought I would take a moment to let you know what we DO and DON'T know about the causes of PF. I will also help you try to figure out the cause of your PF (if a cause is known for your kind of PF).

Idiopathic forms of PF

First, let's address the frustrating "idiopathic" types of PF. We use the term "idiopathic" to describe disease without a known cause. As many of you know, "idiopathic pulmonary fibrosis" (also known as IPF) is only one of the many types of PF for which we don't know the cause. Doctors group these diseases of unknown cause into a category called "idiopathic interstitial pneumonias." There are many of them. I am not going to go into detail about each one. But, I will tell you two pieces of (hopefully) useful information.

(1) Many of these conditions are named after the appearance of your lung tissue under the microscope. Importantly, many of these lung biopsy appearances (which we call "patterns") can be seen in other types of PF of known cause (see later on about the "interstitial lung diseases of known cause or association.") So, just because your biopsy shows "NSIP" doesn't necessarily mean that you have idiopathic NSIP. You might have an "interstitial disease of known cause or association" with an NSIP pattern on your biopsy. Read on and then talk to your doctor for more information.

(2) All of the "idiopathic interstitial pneumonias" require a surgical biopsy of the lung to diagnose, with two exceptions: idiopathic pulmonary fibrosis and unclassifiable idiopathic interstitial pneumonia can in some cases be diagnosed without a biopsy.

Here is a list of the idiopathic interstitial pneumonias (and their abbreviations):  

Major types:
  • Idiopathic Pulmonary Fibrosis (IPF)
  • Idiopathic Non-specific Interstitial Pneumonia (idiopathic NSIP)
  • Respiratory Bronchiolitis-interstitial lung disease (RB-ILD)
  • Desquamative Interstitial Pneumonia (DIP)
  • Cryptogenic Organizing Pneumonia (COP)
  • Acute Interstitial Pneumonia (AIP)

Rare types:
  • Idiopathic Pleuroparenchymal Fibroelastosis (IPPFE)
  • Idiopathic Lymphoid Interstitial Pneumonia (Idiopathic LIP)

Unclassifiable Idiopathic Interstitial Pneumonia (Unclassifiable IIP)

There are other types of PF of unknown cause too. For example, pulmonary sarcoidosis and a number of more rare types of lung disease would also be called "idiopathic", even if they are not included in the "idiopathic interstitial pneumonia" category.

Interstitial Lung Disease of Known Cause of Association
There are a handful of types of PF for which we do know the cause – or at least we understand what might have triggered the disease. We call these diseases "interstitial lung diseases of known cause or association" (I know, ridiculously long).  Here are five major categories of "interstitial lung diseases of known cause or association"
  • Medication-induced
  • Radiation therapy-induced
  • Autoimmune disease (also called Connective Tissue Disease-ILD)
  • Hypersensitivity pneumonitis (Environmental causes)
  • Pneumoconioses (Occupational causes)

If you have been diagnosed with PF (or ILD), you and your doctor can work together to see if you have one of these "interstitial lung diseases of known cause or association." It's not too difficult, and you can start the process by asking yourself a few questions. I'll share with you the questions I ask my patients to sort out possible causes of their PF:


"Have you ever taken a medication to slow a fast heartbeat? Have you ever had atrial fibrillation ("A Fib") or had your heart shocked to stop an abnormal heart rhythm? Have you ever taken a medication called Amiodarone or Cordarone?"
            Amiodarone (Cordarone) can cause ILD.

"Have you ever had urinary or prostate infections? Have you ever taken an antibiotic called nitrofurantoin, Macrobid, or Macrodantin?"
            Nitrofurantoin can cause ILD.

"Have you ever taken methotrexate or received chemotherapy?"
            Methotrexate and chemotherapy can cause ILD.

"Are there other medications you've taken for long periods of time in the past?"
            Lung disease due to medications that you either take currently or have taken in the past can be looked up at Be warned: Many of the cases of lung disease on are NOT caused by medications – but when people develop a lung disease after taking a medication, doctors scratch their heads and wonder if the drug could have been responsible for the lung disease – but they can't really prove the link. Be sure to discuss your medications with your health care provider before you make any changes to your medical regimen – seriously, you could be harmed by stopping your medications.


This one is usually pretty obvious. Any history of radiation treatment to the chest for breast cancer, lymphoma, or another type of cancer can cause PF.

Autoimmune disease

There are a variety of autoimmune diseases that can cause "Connective Tissue Disease-associated Interstitial Lung Disease" (also known as CTD-ILD). "Auto" means "self" – so autoimmune diseases are conditions in which your immune system attacks tissues and organs in your body. This can lead to inflammation, injury, and scarring in different organs. The lungs are often involved.

In my experience, the most common autoimmune diseases that cause PF are:
  • Rheumatoid Arthritis (this is different and less common that Osteoarthritis)
  • Scleroderma (now called Systemic Sclerosis)
  • Polymyositis
  • Dermatomyositis
  • Anti-synthetase syndrome
  • Sjögren's Syndrome.

Occasionally other types of autoimmune disease (such as Systemic Lupus Erythematosis, or "lupus") can cause PF. Certain types of blood vessel inflammation diseases (called "vasculitis") can also cause PF. Some people even develop an "idiopathic interstitial pneumonia" due to "autoimmunity" but without developing one of these specific autoimmune diseases. We now use the term "interstitial pneumonia with autoimmune features" (or "IPAF") to describe this condition. Many of these folks have "NSIP" on their biopsy (see above section on "idiopathic interstitial pneumonias") and can also (correctly) be diagnosed with idiopathic NSIP.

In addition to asking my patients if they have ever had one of the autoimmune diseases listed above, I ask my patients the following questions to sort out if they might have an autoimmune disease:

"Do you have pain, swelling, or stiffness in any of your joints?"
"Are your hands stiff when you wake up in the morning? How long does it last?" (an hour suggests autoimmune disease)
"Have you noticed any thickening or tightening on your fingers, hands, or neck?"
"Have you noticed any rash on your face, chest, or arms? Does it occur in areas exposed to the sun?"
"Do you suffer from heartburn? Do you occasionally have food come all the way up to your throat?
"Do you suffer from dryness of the eyes?"
"Do you suffer from dryness of the mouth?"
"Do your fingers sometimes turn white or red? Does cold weather make this worse?"
"Do you suffer from pain in your muscles in your arms or legs? How about weakness?"

Now, many of us have had one or more of these symptoms – so don't start to worry that you have an autoimmune disease because you've had some joint pains or a rash. But definitely talk to your health care provider about any symptoms you are experiencing --- your doctors can help you determine if you have an autoimmune disease.

Hypersensitivity Pneumonitis

If you break down the term Hypersensitivity Pneumonitis, you can see that it means your lungs are "too sensitive" to something. Usually the "somethings" are proteins from a living thing that you are breathing in – the most common culprits are proteins from mold spores, bacteria, and animals (particularly birds living indoors). Breathing these proteins triggers inflammation in the tiniest little airways in your lungs, followed by inflammation in the walls of the air sacs, and in some cases this leads to scarring.

Hypersensitivity Pneumonitis is a long medical term – let's call it "HP" for short. In my practice, I see a LOT of HP – about 25% of my patients who have any kind of PF have HP (another 25% have autoimmune diseases, and 25% have idiopathic pulmonary fibrosis). There are 3 critical tests that help doctors figure out if you have HP as the cause of your PF:
  • Asking the right questions to identify a possible exposure to proteins you are breathing in (see below)
  • Listening carefully to the lungs for a special kind of lung sounds (called an "inspiratory squeak") – Squeaks sounds just like you'd expect. Squeaky. Ask your doctor.
  • Getting the right kind of CAT scan – in addition to the usual CAT scan performed when you take a deep breath and hold it, a 2nd CAT scan performed after you breath out is also important. With this kind of CAT scan, your doctor can look for "gas trapping," or pockets of air that get trapped in different parts of your lungs when you breathe out.

Here are the questions I ask my patients to figure out if they have HP:

"Do you have a forced air heating system in your home? In a prior home? In a second or vacation home? In your workplace? If so, how long have you been exposed to it? Does it have a humidification system? Has it ever been contaminated with mold?"
"Have you ever had any water in your basement or another part of your home? Have you ever had water damage in your home?"
"Are you aware of any mold in your home (outside of your shower)?"
"Do you use a hot tub on a regular basis?"
"Do you use a humidifier in your home?"
"Do you have any birds that live in your home currently or in the past? Do you spend time in someone else's home where birds live? Do you take care of birds in cages or coops currently or in the past?"
"Have you been exposed to renovation or construction?"
"Have you been exposed to farming or an agricultural setting?"
"What hobbies do you have?"

Remember – just because you might have been exposed to one of the above does not mean it was the cause of your PF. Lots of us have had water in our basements at some point. But be sure to bring this up with your doctor.

Pneumoconioses (Occupational causes)

Pneumoconioses are types of PF that result from exposures in the workplace. Here are just a few examples:
  • Asbestosis (due to asbestos exposure)
  • Coal Worker's Pneumoconiosis
  • Silicosis
  • Berylliosis
  • Hard Metal Lung Disease
  • (there are many others)

I usually ask my patients about their current job and all prior jobs. I also ask whether you ever worked in the military (particularly with exposure to Navy shipyards or dusts, fumes, gases, vapors, or chemicals).

I also ask if you've ever had a job where you were exposed to dusts, fumes, vapors, or gases that you might have breathed in. I also ask about the following exposures:
  • Asbestos
  • Mining
  • Excavating
  • Coal Work
  • Foundry Work
  • Sand Blasting
  • Stonework
  • Ceramics
  • Abrasives
  • Heavy metals
  • Factory work

Please talk to your doctor if you've had a job where you might have been exposed to one or more of these things.

If you do have an "interstitial lung disease of known cause or association," it is important to figure this out. We can sometimes treat you based on the factors that are triggering your disease:
  • Remove exposure to harmful medications
  • Treat autoimmune diseases (usually with a Rheumatologist)
  • Remove exposure to mold, bacteria, birds, etc.
  • Remove exposure to occupational triggers

If you have PF of unknown cause, please talk to your doctor to figure out if you might have an "interstitial lung disease of known cause or association."

You can always get more information about PF and where to get medical care from the Pulmonary Fibrosis Foundation:

Wednesday, March 30, 2016

"I would appreciate more information on outcomes" in PF

Today, I received the following comment on my blog:

"While I appreciate your mantra, "No one is average. Demographics are not destiny. Doctors are not fortune tellers," as the positive message it is, but I would appreciate more information on outcomes. […] The lack of data about disease progression is frustrating. An analysis of PFT variables (e.g., FVC, DLCO) over time of the IPF population, for example, could be enlightening and allow reasonable planning for what's ahead. It would permit a person to see where one might fall on an outcome curve (because everyone is not average, but some people are above and some people are below, and we should have a right to understand that if we want)."
 – Anonymous

To provide some context: I have repeatedly stated in my blog (and in person to anyone who will listen) that "average" outcomes in this disease are not very helpful for an individual person living with PF. Instead, it is helpful is understanding the range of possible outcomes. You can read more about this on my blog here.

Anyway, my immediate response to this comment was: "Right on! I want that too." It's exactly what we all want and need in this disease. I think we can all agree that having information to help us "for what's ahead" is an important goal. So, I am going to give you the data, and then you can decide if it is of value.

Monday, March 28, 2016

What do people living with pulmonary fibrosis need to know?

I am putting together information for folks living with pulmonary fibrosis. Please consider sharing your list of things you wish you knew when you were diagnosed with pulmonary fibrosis. You can post it on my blog, on facebook, tweet it, or email it. 

Dave Lederer

Tuesday, November 24, 2015

"I've forgotten what it feels like to breathe"

Jane is one of my patients living with pulmonary fibrosis. She has agreed to share her story here on my blog. Please share Jane's story with your friends and loved ones to help raise awareness of pulmonary fibrosis.

"Ive forgotten what it feels like to breathe; Im preoccupied by it, and I am aware of every inhale and
exhale I attempt to make. I was diagnosed with interstitial lung disease (pulmonary fibrosis) in December 2012, right after undergoing surgery for my second collapsed lung that year. At the time, I was living in the San Francisco Bay Area attending culinary school. I was 25 years old and had recently left the corporate world of New York to pursue a return to the world of food and wine; I spent at least eight hours a day on my feet in the kitchens - lifting, running, butchering, constantly moving. But I had known something was not quite right with my breathing for about a year. I had a persistent dry cough, which several doctors attributed to allergy induced asthma or acid reflux, but none seemed too concerned. My first lung collapse in February 2012 had been alarming, but no one sensed there was anything more serious than a spontaneous event likely due to my tall and thin build. However, when my other lung collapsed in December and a biopsy was performed, interstitial lung disease was the diagnosis and I was sent to see a specialist in San Francisco. A few months later and no real understanding of why I had developed the lung disease or if there would be any viable courses of treatment, I returned to New York in order to have the support of my family while navigating these waters.

Saturday, September 12, 2015

PFF Summit, Washington, DC, November 12-14, 2015

The Pulmonary Fibrosis Foundation will be holding its 3rd Summit in Washington, D.C. from November 12 to 14. I am planning on being there along with many other health care professionals and scientists who are passionate about raising awareness and finding a cure for PF. If you are a patient with PF or if someone you love has PF, I strongly encourage you to attend the Summit. You will have the opportunity to meet doctors, scientists, and other patients and caregivers. Special sessions are planned just for patients and caregivers. You can learn more about the Summit, including information about online registration at

I hope to see you there!

Wednesday, September 2, 2015

An update about IPF Treatment Guidelines

You might have heard that there are new “treatment guidelines” for Idiopathic Pulmonary Fibrosis (known as “IPF”). I was part of a webinar hosted by the Pulmonary Fibrosis Foundation last month where we summarized the new guidelines. Check it out.

If you have IPF, I think it is important for you to understand which treatments are currently recommended for IPF — and to also understand which treatments are not recommended for IPF. Before I begin, remember that everything on this website is informational in nature — please do not interpret anything I say as medical advice. Discuss everything with your doctor first before you make any changes to your medical treatment regimen. Also, you should be aware that these guidelines were only developed for folks with IPF. These guidelines do not apply to people with other forms of interstitial lung disease or pulmonary fibrosis.

Monday, August 10, 2015

I have PF. What can I do about my cough?

Cough is one of the most troublesome symptoms for people living with pulmonary fibrosis. I would like to share my thoughts about treatments that seem to help cough in many of my patients with PF.

First, remember that I can't give medical advice here. Always discuss this information with your doctor before starting, stopping, or changing any of your treatments.

Most people with PF who have cough suffer from a bothersome and persistent cough without much phlegm (also known as sputum, which is any liquidy stuff you cough up). When there is phlegm, it tends to be thin and clear or white. Many people with PF report that the cough occurs in the morning (when the phlegm may be thicker) and might be worse with talking (particularly on the phone) or after exertion. Be sure to talk to your doctor if you cough up thick or yellow sputum, or if you cough up blood or blood clots, or if you have fever or chills, or if your cough changes all of a sudden.

Wednesday, November 19, 2014

Should the PFF and CPF invest in pharmaceutical companies?

The New York Times is reporting that the Cystic Fibrosis Foundation stands to receive $3.3 billion in royalties resulting from their investment in a biotech company years ago. That initial investment led to ground-breaking science and a "blockbuster" drug that has a pretty amazing effect in a small fraction of people with cystic fibrosis. Critics are saying that "a higher price means higher royalty payments, [and perhaps] the foundation did not do enough to bring the cost down." 

Wednesday, October 15, 2014

UPDATED: The FDA approve pirfenidone and nintedanib to treat IPF

The U.S. FDA approved both pirfenidone and nintedanib to treat IPF on October 14, 2014. This is wonderful news, since as you probably know, we've had nothing available to treat IPF in the United States other than oxygen, exercise, and lung transplantation. Both drugs should become available in the US by the end of October, and both pharmaceutical companies are offering financial assistance programs.

Don't forget that you can always call or email the Patient Communication Center at the Pulmonary Fibrosis Foundation at 844.Talk.PFF or

You can read more about these medications on the following websites:

Sunday, July 27, 2014

A Pulmonary Fibrosis Primer for Doctors

This is a post for health care professionals. Many doctors, nurses, and other health care workers have limited experience with Pulmonary Fibrosis. These are my own recommendations, not those of any organization I am affiliated with. This is not intended as a comprehensive review -- instead I provide highly focused learning points that can be used in clinical practice. 

Wednesday, July 16, 2014

Does Sleep Apnea Cause Pulmonary Fibrosis? Help me found out...

I have a theory. I believe that sleep apnea causes idiopathic pulmonary fibrosis. Maybe not in everyone -- and there are definitely other risk factors that contribute to IPF. But I believe it.

Here's why:

Friday, July 4, 2014

Please participate in Dr. Swigris' online oxygen research study at National Jewish

Dr. Jeff Swigris at National Jewish Health in Denver has received funding from the Patient Centered Outcomes Research Institute to run the Participation Program for Pulmonary Fibrosis. study the benefits of using oxygen for people with all kinds of pulmonary fibrosis. This is a free online research study that is easy to participate in from home. He is looking for people with pulmonary fibrosis and their caregivers who meet any of the following criteria:

Thursday, July 3, 2014

"We the patients and caregivers live in the here and now.”

Barbara, I stole the title of this post from your comment to my last post. Your words crystallized the message in the comments so far.

I'll be honest. I expected everyone to say they wanted to spend the Pulmonary Fibrosis healthcare dollar on research for a cure. I was prepared to make the argument that we also need to fix the problems with delivery of healthcare to patients with PF. Very happy to see that we are largely in agreement.

Here's what I heard from your comments:

Sunday, June 29, 2014

What do you think is important for the Pulmonary Fibrosis Community?

You may have already read that the FDA is holding a public meeting on September 26, 2014 to give patients an opportunity to tell the FDA which symptoms and treatments you think are important in idiopathic pulmonary fibrosis.

This is your chance to be a part of the drug development process at the FDA! It's a public meeting -- so that means you can attend the meeting live in person or via the internet. Just click over to the registration website. On the FDA website, you will see two sets of questions that the FDA wants patients to discuss at the meeting: One set is related to symptoms and the other is related to current treatment approaches.

Sunday, May 25, 2014

IPF Clinical Trials Webinar, May 28, 2014, 1pm Central Time

The Pulmonary Fibrosis Foundation is holding a free webinar at 1pm CT on May 28, 2014 to provide information about the results of the three recent IPF clinical trials. I will be participating in the webinar, along with Greg Cosgrove, MD and Kevin Flaherty, MD. You can learn more and register here.

Thursday, May 22, 2014

"Should I take NAC for my pulmonary fibrosis?"

This has been an exciting week in the world of Pulmonary Fibrosis. The results of three well-designed clinical trials were published online and were presented at the American Thoracic Society meeting in San Diego. I reported on the results of two of these trials in a previous post. In this post, I am going to talk to you about the results of the PANTHER-IPF trial, which studied N-acetylcysteine (or "NAC") for idiopathic pulmonary fibrosis (or IPF).

Monday, May 19, 2014

Clinical trial results for pirfenidone, nintedanib, and NAC for IPF

There have been some exciting developments recently. On Sunday, May 18, 2014, The New England Journal of Medicine published the results of three clinical trials that studied three different treatments for idiopathic pulmonary fibrosis (IPF): pirfenidone, nintedanib, and N-acetylcysteine (NAC).

Friday, May 16, 2014

Expanded Access Program: You might be able to get pirfenidone in the U.S. soon...

Intermune announced an Expanded Access Program for pirfenidone for people with Idiopathic Pulmonary Fibrosis. Below is a press release from the Pulmonary Fibrosis Foundation. For more information, contact the PFF's Patient Communication Center at 844.TalkPFF (844.825.5733) or email

Tuesday, April 29, 2014

"I was just diagnosed with Pulmonary Fibrosis. What do I do now?"

What advice do you have for people who were just told they have PF? Here's my list.

First, get yourself an appointment at an ILD center. You can find a list of ILD Centers on the Pulmonary Fibrosis Foundation's website. It is important that you work with your doctor to come up with the most accurate diagnosis and the best possible treatment recommendations early in the course of your disease. A few years back, I published a research study that found that people with IPF who show up at an ILD Center early after the onset of symptoms seemed to have better outcomes in the long-term.

Monday, February 17, 2014

More on Predicting the Future in IPF

John R. asked the following question:

"What is your take on using the GAP Risk Assessment System as a tool to help determine a basic prognosis for the IPF patient?"

Here's my answer:

Sunday, February 2, 2014

Pulmonary Fibrosis Support Group at NYP/Columbia, Feb-June 2014

We will be holding our Pulmonary Fibrosis Support group at NYP/Columbia in Manhattan on the following dates during the first half of 2014:

February 20
March 20

April 17
May 15
June 19

Time: 3pm-5pm

Atchley-Loeb Conference Room
Presbyterian Hospital Building, 8th floor
622 West 168th Street
New York, NY 10032

Please try to bring your own oxygen, but we will tanks for those who need them.

All are welcome! Call Susanne or Julie in our ILD office at 212-305-8203 with any questions.

Tuesday, December 24, 2013

Am I Too Old for a Lung Transplant?

I'd like to talk about lung transplantation again. In this post, I'll try to answer the question "Am I too old for a lung transplant?" As you will see, it's not a simple thing...

Sunday, November 17, 2013

Pulmonary Fibrosis/ILD Support Group in Manhattan

We will be holding our next Pulmonary Fibrosis Support Group for patients and their caregivers at Columbia University Medical Center/New York Presbyterian Hospital on Thursday, November 21, 2013 from 3-5pm. I will be there along with our Pulmonary Fibrosis team. All are welcome!

The address is 622 W 168th Street, New York, NY 10032
Take the Presbyterian elevators to the 8th floor and go to room E107. 
Support Group is held in the Atchley-Loeb Conference Room. 
Contacts: Julie or Susanne at 212-305-8203

Hope to see you there!

Dr. Lederer

Sunday, November 10, 2013

"Should I take prednisone for my Pulmonary Fibrosis?"

I've received a number of questions about whether or not prednisone should be used to treat pulmonary fibrosis. In this post, I am going to try to help you understand the role of prednisone in the treatment of pulmonary fibrosis. I first want to remind you that you should not make any changes to your current medical treatments without discussing things with your doctor. In particular, if you stop taking a medication like prednisone, you could suffer serious and even life threatening withdrawal symptoms.

Tuesday, October 29, 2013

The Honest Truth about Lung Transplantation: It’s a Wonderful and Terrible Thing

I want to begin a conversation about lung transplantation as a treatment for Pulmonary Fibrosis. This is a huge topic and the conversations that I have with my patients about lung transplantation range from “we need to move forward with evaluating you for lung transplantation right now” to “lung transplantation is a dangerous option for you, and we should avoid it.” There is no single conversation about lung transplantation. So writing this post has been a challenge. Perhaps this will be the first in a series of posts about lung transplantation for Pulmonary Fibrosis.

Thursday, October 24, 2013

Pulmonary Fibrosis Support Group in New York City

Hi everyone!

I wanted to alert everyone to a new Pulmonary Fibrosis Support Group that we started at Columbia University/New York Presbyterian Hospital in Manhattan. Our next support group will be held on Thursday, November 21 from 3pm to 5pm at 622 W 168th Street in Manhattan. We will be meeting on the 8th floor of the Presbyterian Hospital Building in the Atchley-Loeb Conference Room. I will be there along with the rest of our Pulmonary Fibrosis team at Columbia. We will talk about clinical trials, lung transplantation, and any other topics that people want to talk about.

Please call 212-305-8203 to RSVP.  More information available here.

New post on lung transplantation coming soon!


Saturday, October 5, 2013

“The Internet Said I Have 3 Years to Live”

I’ve been having a hard time writing this post about “prognosis”, or how long you might expect to live with Pulmonary Fibrosis. It’s a tough subject. After struggling for about 30 minutes, I realized two things:

Number one – my difficulty writing about prognosis is a pebble in comparison to your mountain of difficulty living with Pulmonary Fibrosis. So I’m going to stop complaining right now.

And number two – it’s difficult to write about prognosis because…. Well, because prognosis is a lie. A myth. Let me explain.

Friday, October 4, 2013

Dr. Swigris' Pulmonary Fibrosis Research Website and Blog

Dr. Jeff Swigris from the Pulmonary Fibrosis Program at National Jewish Health in Denver, Colorado has developed a new "patient-centered" research program for patients with Pulmonary Fibrosis. He is a world leader in the clinical care of patients with Pulmonary Fibrosis and he is also an outstanding clinical researcher studying new ways to improve the everyday life of patients with Pulmonary Fibrosis. He's got some great ideas and I encourage everyone to take a look at his website at You can join his "P3F Registry" if you are interested in being considered for enrollment into research studies about Pulmonary Fibrosis.

Thursday, October 3, 2013

The Sixth Sense: Why you should use oxygen if you have Pulmonary Fibrosis!

Hi everyone!

I’m just completely blown away the overwhelming response to my blog. I’ve received comments, emails, and a few in-person thank yous. I’m pleased that you are finding the site useful. Please keep sending me your ideas for future blog posts.

Right now I’m flying at 30,000 feet on my way to Denver, Colorado for a meeting about Pulmonary Fibrosis. I’m a lung doctor, so I’m always thinking about how lungs are working (or not working), and right now I’m wondering if I’m harming myself by spending a few hours at altitude.

As you might know, the air is “thinner” at higher altitudes, which means there is simply less air to breathe. Now, I’m not breathing “30,000 feet” worth of thin air – which would be really bad. Instead, since the air in the cabin of this Boeing 757 is pressured a bit, I’m breathing about “8,000 feet” worth of thin air. For someone with normal healthy lungs breathing comfortably at sea level, about 99% of the hemoglobin in the blood leaving the heart might be carrying oxygen -- that’s a normal healthy percentage. But with the thin air up at 8,000 feet, only about 90% of the hemoglobin is carrying oxygen.

Should I be worried?

Maybe. I’ll explain why…

Tuesday, October 1, 2013

Should I join a Pulmonary Fibrosis support group?

Kathy Lindell, the nursing manager for the Dorothy P. and Richard P. Simmons Center for Interstitial Lung Disease at the University of Pittsburgh is guest blogging today on our site on the importance of joining a Pulmonary Fibrosis support group. Kathy serves on the Medical Advisory Board for the Pulmonary Fibrosis Foundation and actively participates in the clinical care of patients with Pulmonary Fibrosis. Please share this with loved ones and friends and leave comments and questions for Kathy.
- David Lederer, MD

Kathleen O. Lindell, PhD, RN

Should I join a Pulmonary Fibrosis support group?
Kathleen Lindell, PhD, RN
Research Assistant Professor
Division of Pulmonary, Allergy, and Critical Care Medicine
Dorothy P. & Richard P. Simmons Center for Interstitial Lung Disease
University of Pittsburgh, Pittsburgh, PA

Hi everyone! I am thrilled to be a guest blogger on Dr. Lederer's website. As a reminder, this post represents my personal views, not those of the University of Pittsburgh.

Attending a Pulmonary Fibrosis support group is a crucial part of helping you and your caregiver(s) adapt to the many unknowns that come with a diagnosis of Pulmonary Fibrosis. The disease course of Pulmonary Fibrosis is variable, so there is no set timeline on how the disease progresses.  There is no way to predict your future, and this can cause a great deal of angst and fear of the unknown for you and your caregiver(s).

The support group should provide information so that you can learn more about your disease; topics might include:

  • What is Pulmonary Fibrosis?
  • Importance of Exercise
  • Use of Home Oxygen
  • What are the treatment options?
  • Is a lung transplant the right thing for me?

The support group members can provide you with a home where you can get help with the day-to-day life of IPF;  explaining what IPF is to your family/friends, how to travel with oxygen, etc. The benefits of attending an IPF support group include meeting other people who are going through exactly what you are going through.

Maybe you’re not the type who would attend a support group? We advise our patients (and actually write a prescription) to attend at least once and then make their own decision if it’s for them.

Maybe you do not have a support group near you. There are on-line support groups that are easy to join. Here is a link to see if there’s a support group near you or how to join an on-line support group.

Our experience has been that this disease is not patient friendly. I wish I could say it was.  BUT, our experience has also been those who attend and participate in support group live better with their disease because of their interactions with other patients and caregiver(s) who are going through the same journey.

Monday, September 9, 2013

Five reasons you should use oxygen if you have pulmonary fibrosis

Your doctor told you to use oxygen for good reasons. It's a difficult transition, but smart use of oxygen is one of the most important things you can do if you have pulmonary fibrosis. Here's why you should maintain your oxygen saturation >90% 24hrs/day:

  1. You will suffer less. Oxygen saturations < 90% make most people feel short of breath.
  2. You can do more with oxygen. Using oxygen during activities will allow you to accomplish tasks that you simply can't do any other way.
  3. You can avoid pulmonary hypertension. Avoiding low oxygen levels can help prevent a serious complication of pulmonary fibrosis called pulmonary hypertension.
  4. You can improve your chances of getting a lung transplant. Lung transplant doctors want you to be strong, active, and have a healthy weight. Using oxygen allows you to be active and participate in rehabilitation, which can turn you into a better surgical candidate!
  5. You might live longer. While not proven to be the case for patients with pulmonary fibrosis, oxygen use does help people with chronic obstructive pulmonary disease (COPD) live longer. 

In an upcoming post, I will discuss some of the practical aspects of using oxygen in and out of your home. 

    Thursday, September 5, 2013

    The Pulmonary Fibrosis Checklist: Do these 8 things!

    This is a quick post to introduce the Pulmonary Fibrosis Checklist. If you've been diagnosed with any form of pulmonary fibrosis, talk to your doctor about these 8 things...

    The Pulmonary Fibrosis Checklist

    1. Use enough oxygen to keep your oxygen saturation >90% 24 hrs/day.
    2. If eligible, participate in pulmonary rehabilitation.
    3. If you have idiopathic pulmonary fibrosis (IPF), consider treatment with pirfenidone or nintedanib, and avoid long-term use of prednisone (updated January 23, 2016)
    4. Consider a sleep study to check if you have sleep apnea.
    5. See if you are eligible to enroll in a clinical trial of experimental therapies.
    6. Obtain a consultation from an ILD Center for help establishing your specific diagnosis and providing management advice
    7. See if lung transplantation is an option for you. 
    8. Visit the Pulmonary Fibrosis Foundation online for information, resources, and support.
    What do you think should be added to this list?

    I will focus on each one of the Checklist items in future posts.

    Thursday, August 29, 2013

    Should I undergo a lung biopsy to diagnose my pulmonary fibrosis?

    Of course only you and your doctor can really answer this question. But there are some important things you should know before you go under the knife...

    Yes, sometimes lung biopsies are necessary in PF...
    First thing is that a lung biopsy is sometimes (but not always) needed to help diagnose the kind of PF you have. And it's important to try to figure out which kind of PF you have for the following reasons:
    1. Different kinds of PF respond to medications differently. For example, prednisone is widely used to treat PF when inflammation is present in the lung, but it turns out that prednisone is harmful if you have IPF. Sometimes a lung biopsy is needed to sort this out before deciding on a treatment plan. If I don't think the results will influence the immediate treatment plan, I sometimes still recommend a biopsy since the results will often influence future treatment decisions.

    2. Sometimes infections, serious inflammatory conditions (such as a "vasculitis"), and other conditions may be alternative explanations for the appearance of your CT scan. Lung biopsies can be very helpful in these settings.

    3. Different kinds of PF progress at different rates. Sometimes a lung biopsy helps us understand how quickly you might get sicker. This information might be helpful (for example in deciding when to seek a lung transplant evaluation), but is probably not enough of a reason to undergo a lung biopsy in most cases. 

    Tuesday, August 27, 2013

    The Alphabet Soup of Pulmonary Fibrosis

    The Alphabet Soup of PF
    It is not surprising that there's a lot of confusion out there about the different kinds of PF. Here's why...
    • There are over 100 different kinds of PF that all look very much alike
    • There is an alphabet soup of confusing and sometimes poorly defined abbreviations for many types of PF (IPF, PF, ILD, NSIP, RB-ILD.... the list goes on and on).
    • Even experts will often disagree about which kind of PF you have.
    Experts typically do agree, however, that it is important to try to sort out which kind of PF you have, since different kinds of PF behave differently both in terms of how quickly the disease might progress as well as whether it might respond to medical treatments (such as prednisone). I'll talk about how we sort out which kind of PF is affecting the lungs in future posts. In this post, I'll try to clear up the confusion about the different terms used to describe different kinds (and families) of PF

    Friday, August 23, 2013

    What is Pulmonary Fibrosis?

    The word "pulmonary" means lungs and the word "fibrosis" means scar tissue -- just like the scars you might have on your skin from previous injuries or surgeries. So, in its simplest sense, pulmonary fibrosis (sometimes called PF) means scarring in the lungs. But many people use the term PF to describe a family of over 100 diseases that affect the walls of the air sacs* of the lung. This larger family of diseases is called "interstitial lung disease" or ILD. While in many cases of ILD, scar tissue is present in the air sacs, there can also be inflammation or other changes to this delicate lung tissue. The details depend on which kind of PF you have (more on this later).

    There are four consequences to the build-up of scar tissue or inflammation in the lungs. Doctors use these consequences to recognize that someone has PF.

    Thursday, August 22, 2013

    Why a blog about pulmonary fibrosis?

    Why a blog about pulmonary fibrosis? You already know why.

    There is a world of confusion out there about PF. What is it? What's the difference between IPF, PF, and ILD? What causes it? Will my kids get it? Which treatments work? Should I try stem cells? prednisone? NAC? Do I need a lung transplant?

    Top that off with the nearly universal problem that in the months and years before you are finally told that you have PF, you were probably told that your cough or difficulty breathing was due to asthma, COPD (chronic obstructive pulmonary disease), emphysema, heart disease, or sleep apnea, or that "you just need to lose weight and exercise." 

    It's no surprise that just about every single one of my patients with PF is frustrated and confused when he or she walks in the door. 

    I created this blog to try to clear up the confusion about PF. Here we go...