Life With Pulmonary Fibrosis

The Pulmonary Fibrosis Foundation is pleased to announce our new
Life With Pulmonary Fibrosis video series!

Launched in May 2018, this video series will discuss a variety of topics, ranging from education, stories from real people living with pulmonary fibrosis and idiopathic pulmonary fibrosis, information and services provided by the Foundation, and much more.

Check back frequently for new videos, or subscribe to our YouTube channel to receive a notification when a new video is released. You may also follow us on Facebook for new video announcements.

Please note that any information contained in these presentation are for informational and/or educational purposes only. It is not intended to be a substitute for professional medical advice. Always consult your personal physician or health care provider with any questions you may have regarding your specific medical condition.


PF Video: Intro to Life With Pulmonary Fibrosis


Presented by Dr. David Lederer, MD
PFF Senior Medical Advisor, Education and Awareness
© Pulmonary Fibrosis Foundation

What is Pulmonary Fibrosis?

Dr. David Lederer explains that the big picture of lung disease is vast and includes a family of diseases called interstitial lung diseases (ILD), which consist of more than 100 different diseases. These diseases are grouped together because they share two common features - inflammation and scar tissue, which occur in the walls of the tiny air sacs of the lungs.

The difference between interstitial lung disease and pulmonary fibrosis is that interstitial lung diseases include all of the diseases in which there is inflammation or scar tissue in the walls of the air sacs. Pulmonary fibrosis is not a specific disease but is a general term that refers to any kind of ILD in which scar tissue is present in the walls of the air sacs.

 PF Video: Portraits of Pulmonary Fibrosis with Heather

  Portrait of PF: Heather Kagel
© Pulmonary Fibrosis Foundation

Heather Kagel Shares Her Story

Meet Heather Kagel, who was diagnosed with idiopathic pulmonary fibrosis (IPF) five years ago after experiencing breathlessness and a cough that wouldn’t go away. Heather has a genetic mutation that caused her IPF as well as oral cancer. While the disease has slowed her down, Heather tries to stay active and positive. She attends a monthly support group and participates in programs like the PFF Walk and PFF Summit. Heather has found hope in meeting others with IPF and talking about how to best live with the disease.

PF Video: The PFF Patient Communication Center


PFF Patient Communication Center
© Pulmonary Fibrosis Foundation

Patient Communication Center Overview

It’s here - a comprehensive resource for patients, caregivers and healthcare providers. The PFF Patient Communication Center (PCC) provides essential information including where to find specialized medical centers, how to join or start a support group, and other support services in your area. The PCC is available by phone at 844.TalkPFF (844.825.5733) and email, pcc@pulmonaryfibrosis.org.

PF Video: Portraits of Pulmonary Fibrosis with Dot

Portraits of PF: Dot Delarosa
© Pulmonary Fibrosis Foundation

Dot Delarosa Shares Her Story

After being diagnosed with pulmonary fibrosis, a disease she had never heard of, Dot Delarosa was told she had two to five years to live. With a lung capacity of 20 percent, Dot was referred for lung transplant. She received a transplant in 2010 and celebrates her lungaversary (anniversary of a lung transplant) every year. Dot describes her journey with pulmonary fibrosis and how she has devoted her life to giving back to patients and the community.


PF Video: Pulmonary Fibrosis Progression

PF Progression
© Pulmonary Fibrosis Foundation

Dr. David Lederer discusses pulmonary fibrosis progression symptoms

Dr. David Lederer explains that each patient’s journey with pulmonary fibrosis is unique. When thinking about the future, your doctor may be able to give you an idea of what the progression of your disease might look like. In the early stages of the disease, people often have no symptoms. Learn about progression episodes and how your doctor will monitor disease progression.


PF Video: Why Join A Support Group

Why Join a Support Group
© Pulmonary Fibrosis Foundation

Support groups provide education and create friendships

No one needs to go through the journey with pulmonary fibrosis alone. Meeting others living with PF and becoming part of your local pulmonary fibrosis community can offer friendship and support. Typically, support groups include an educational component and an opportunity for patients and caregivers to ask questions and share their day-to-day experience with pulmonary fibrosis.

PF Video: Portraits Series with Gary and Marianne

Portraits of PF: Gary and Marianne
© Pulmonary Fibrosis Foundation

Married couple shares their story 

Gary and Marianne were married just two and a half years when Gary was diagnosed with idiopathic pulmonary fibrosis. They found hope and inspiration in their local support group and are now leaders of the group. Marianne describes the difficulties of dealing with the disease as it progresses. As a caregiver, Marianne takes care of herself so that she can be in the best possible shape to support Gary. Marianne and Gary stay proactive, positive and open-minded in their journey with pulmonary fibrosis.

PF Video: Supplemental Oxygen

Supplemental Oxygen
© Pulmonary Fibrosis Foundation


Dr. David Lederer discusses how oxygen helps

When oxygen levels drop to 88% or below, healthcare providers may order supplemental oxygen. Using oxygen can help you reduce breathlessness and reduce stress on other organs while maintaining an active lifestyle. Be sure to ask your healthcare provider if the equipment offered by the supplier is right for you. Your healthcare provider can help make sure you’re using it safely and effectively.

PF Video: How to Start A Support Group

How to Start a Support Group
© Pulmonary Fibrosis Foundation

Learn how you can make a difference by supporting others

We need you! Learn how to make a difference in the lives of people living with pulmonary fibrosis by starting a support group. The PFF provides five easy steps to help you get started and provide you with the resources to keep things running throughout the year.

PF Video: What is Pulmonary Rehabilitation?

Pulmonary Rehabilitation
© Pulmonary Fibrosis Foundation

Exercise your lungs through pulmonary rehabilitation.

Pulmonary rehabilitation is a structured exercise program designed for people living with chronic lung diseases like pulmonary fibrosis. Exercise can give your more energy and improve your focus, mood, and overall sense of well being. Pulmonary rehab, when prescribed by your healthcare provider, can help you find a safe and effective level of exercise tailored just for you.

PF Video: Palliative Care

Palliative Care
© Pulmonary Fibrosis Foundation

Get relief with palliative care

People living with pulmonary fibrosis can find relief with palliative care. Palliative care is an approach to managing the symptoms experienced by people affected by a serious illness to help them achieve their best quality of life. It also addresses advance care planning so that caregivers and family members know what kind of care their loved ones want if they become unable to speak for themselves. Palliative care is different from hospice care and can begin at diagnosis or at the same time as any medical treatment. The best way to get palliative care is to ask for it.

PF Video: Patient Registry

PFF Patient Registry
© Pulmonary Fibrosis Foundation

The Pulmonary Fibrosis Foundation has registered over 2,001 patients

The Pulmonary Fibrosis Foundation is excited to announce that we have achieved our enrollment goal for the Patient Registry with participation of 2,001 patients. The Registry, launched in 2016, is a collection of comprehensive anonymized data from patients living with pulmonary fibrosis (PF).

Registry data will help inform best practices in care and identify potential treatment targets. The Registry will also speed the path to clinical trials by creating a pool of patients who are interested in participating. The Registry includes information about the patient’s age and gender, details on how the diagnosis was made, test results, medications and medical outcomes. It also includes high resolution CT scans and a biorepository of patient blood samples.

PF Video: Advocacy

PF Advocacy
© Pulmonary Fibrosis Foundation

Cindy Chandler tells her story 

Cindy Chandler became a PFF Advocate after losing her her husband and her mother-in-law to pulmonary fibrosis. Now, she describes the effort to build a group of grass-roots advocates across the country as a calling.

Cindy learned, with the help of the PFF, how to communicate effectively with her legislators in order to inform them of the PF community's needs. She explains, along with former Congressman and PFF Advocate Brian Baird, that advocacy efforts have resulted in $200 million in funding for PF research over the past decade.

There is still much more work to be done. You can become a PFF advocate too!

PF Video: Treatment Options

Treatment Options
© Pulmonary Fibrosis Foundation

Learn about the various treatment options

There are a number of treatment options available for pulmonary fibrosis. These may include supplemental oxygen, pulmonary rehabilitation, medication, and in some cases, lung transplantation. Be sure to speak with your doctor about which treatment options and plans are best for you.

 

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