Jerry Barnum is 70 years old and lives in Minnesota. In 2017, he was diagnosed with interstitial pulmonary fibrosis with autoimmune features.

As someone with a terminal illness, he knows about grief. Anger at times, sadness too. Yet after reading a testimony from another patient explaining her path to acceptance, he found a way to to… Read more

This is Linda Gorman’s story: she used to be a self-labelled “control freak” believing she could control her health by exercising more, eating and sleeping better. But then she began to experience shortness of breath, and nothing she did helped.

She was eventually diagnosed with pulmonary fibrosis (hypersensitivity pneumonitis). At the… Read more

Today we shared Barbara Grubb’s story: She suffered from a chronic cough for years and it was a long time before she received her diagnosis. In March 2020, she required more and more oxygen, which meant the end of plane travel and cruises as she had to take tanks of oxygen with her. She soon got the news that her condition was deteriorating and… Read more

The Pulmonary Fibrosis Foundation has released a series of educational materials designed to help patients and caregivers manage the disease. The information is also available to nurses and doctors who may find themselves looking after PF patients.

There are three guides available: the Pulmonary Fibrosis Information Guide, which is… Read more

Some of the most successful campaigns, be it fundraising initiatives or trying to raise awareness, capture the attention of donors through personal stories. These personal stories are used in a way that is meaningful for the patient, while also highlighting the importance for others who may be less familiar with the disease. The stories… Read more

For patients living with idiopathic pulmonary fibrosis (IPF) or any chronic lung disease, it’s known that an acute exacerbation, illness or fluke decrease in lung function could drastically change their ability to breathe.

Since this can and does happen for unknown reasons, there is often this sense of “living everyday like it is your… Read more

As a person living with pulmonary fibrosis, it’s important to fully understand your disease. Take the time to learn about the condition and how it’s treated, so that you can play a proactive role in your treatment and get the most from your health care team. We’ve put together a list of six ways to get the most out of your doctor’s… Read more

Many people are passionate about traveling, as it can be both exciting and rejuvenating. When diagnosed with a life-threatening illness such as idiopathic pulmonary fibrosis (IPF), or any other type of interstitial lung disease (ILD), a very real fear for some is that their ability to travel will be taken away as their disease… Read more

A hard truth about being diagnosed with a chronic illness is that there is usually a life expectancy to go with it. Often times, once a patient hears the diagnosis of their disease, there comes a desire to know ‘how long’ one can live with the disease and what the prognosis or outcome will eventually be. There are some diseases that have a… Read more

In an animated video from Boehringer Ingelheim Idiopathic Pulmonary Fibrosis, the body’s need for a constant supply of oxygen is explained and how oxygen therapy works for pulmonary fibrosis patients.

The film describes how each cell, tissue, and organ within the body needs oxygen from the bloodstream to survive, and that pulmonary… Read more

Diagnosing pulmonary fibrosis (PF) is complicated. Symptoms can mirror those of other lung disorders like asthma, pulmonary hypertension or chronic obstruction pulmonary disease (COPD). Because of this, six different diagnostic tools are needed for an accurate diagnosis of PF, according to the American Lung Association.

1.… Read more

Anyone with a chronic illness will testify that they spend a lot of time in the doctor’s office having blood work done. Which means getting pricked with a lot of needles, which can sometimes take two or three (or more) attempts to find a compliant vein.

This Humans of the Future Facebook video has the answer to temperamental veins. The… Read more

Vitamin D is often called the “sunshine vitamin,” mostly because we get it naturally when the sun’s UV rays interact with our skin, which triggers the vitamin’s synthesis. The vitamin helps our body’s absorption of calcium to keep our bones strong and encourage healthy cells to grow.

Last year, researchers demonstrated the protective… Read more

In a video from PeerView Press, pulmonologist Dr. David J. Lederer discusses idiopathic pulmonary fibrosis (IPF), with a focus on personalized care through communications and innovative strategies. He is joined by primary care physician Dr. Steven J. Antonini and pulmonary fibrosis patient Robert Brynteson.

… Read more

The main symptoms of IPF include breathlessness (particularly when doing anything physical), a persistent dry cough, and fatigue. However, these symptoms are also commonly presented in other lung diseases. Other symptoms which point to a diagnosis of IPF are a crackling sound when your lungs are listened to with a stethoscope and the… Read more

Telling other people you have a chronic disease such as pulmonary fibrosis is never easy as our resident columnist Kim Fredrickson explains in one of her columns, “How Do You Tell Others You Have a Terminal Lung Disease?“.

Telling family, friends, and co-workers that you have a serious illness is an emotionally exhausting process,… Read more

Traveling with pulmonary fibrosis (PF) can be very challenging if you require oxygen. You need to be sure you have enough oxygen for your journey, plus extra in case of any hold-ups or unforeseen circumstances.  Usually, traveling short distances doesn’t really pose many problems but long distance car travel or traveling by other means… Read more

If you have a chronic illness like pulmonary fibrosis it’s easy to focus on the future instead of living your life in the moment.

Our resident columnist Kim Fredrickson knows this all too well and in one of her columns “Don’t Let Your Diagnosis Take Away Your Ability to Live NOW,” she urges people who suffer from pulmonary… Read more

When you have a chronic illness such as pulmonary fibrosis, it is only natural that you may find yourself spending a lot of time thinking about some of the important life events and milestones that you may not get to experience.

Charlene Marshall, our regular columnist, explores this side of the disease in one of her articles. Charlene… Read more

Pulmonary fibrosis is a progressive lung disease caused by scarred tissue in the lungs. The thickening of this tissue makes it difficult to transport oxygen from the lungs, resulting in shortness of breath. Below is a list of informative books about the disease, compiled with help from alibris and Friesen Press and personal experiences from… Read more

When it comes to understanding pulmonary fibrosis, asking your healthcare providers questions you have is important. Unlike a non-credible source on the Internet or a friend of a friend who suffers from the same condition, your healthcare providers are trained to answer your questions, especially as they relate to your healthcare… Read more

Bernie Williams is a baseball legend, most famous for being an outfielder for the New York Yankees. Since retiring from the sport in 2006, Williams has been busy recording jazz albums and was nominated for a Latin Grammy in 2009. However, he has also been devoting his time to another matter close to his heart: becoming an advocate for… Read more

There are many symptoms associated with pulmonary fibrosis (PF), but fatigue is often cited as one of the most difficult to deal with by those living with the disease.

Fatigue in pulmonary fibrosis goes much further than simply being tired and often can’t be remedied by a good night’s sleep. Fatigue can be so debilitating that it affects… Read more

To be considered eligible for an organ transplant, patients will often go on a long and difficult journey. Candidates are put through a series of tests and actually receiving an organ will include a lot of waiting and hoping. To make the road to transplant a little easier, we’ve put together some advice from the … Read more

Medical marijuana is gaining popularity as a complementary medicine to help with many symptoms associated with chronic illnesses. While many people are curious about how marijuana (or cannabis) may help improve their symptoms, they are also reluctant to smoke the substance. However, there are ways that medical marijuana can be administered,… Read more

If you’re an individual living with a lung disease, you’re likely very aware of how the weather can impact your ability to breathe. Typically, patients living with idiopathic pulmonary fibrosis (IPF) are impacted by extreme temperatures that often make it difficult to breathe. In the summer months, extreme heat can cause a flare-up or… Read more

 

This video introduces the new online platform from Medtep IPF, designed to help patients with idiopathic pulmonary fibrosis manage their disease. The platform keeps a record which can be directly accessed by their healthcare providers.

The program can be used to track diet, exercise, symptoms and even… Read more

Aquatic exercise can be very beneficial for patients with pulmonary fibrosis, as the water supports a good proportion of a person’s body weight, making it easier to move around. The American Physiotherapy Association has some recommended exercises to try next time you’re in the pool:

1. Walking or jogging. Try alternating between walking… Read more

According to the Cystic Fibrosis Foundation, there are seven major airway clearance techniques (ACTs) for patients with lung disease. Airway clearance is needed to help clear away mucus from the lungs to help prevent infections and to improve lung function. Here are some of those techniques:

• Coughing and Huffing Coughing is one of the…

Read more

The people in the film talk about how having pulmonary fibrosis has changed the way they look at the world. They now take each day as it comes and consider every day as a gift. Their priorities have changed — they no longer worry about the little things in life, they’d rather spend their time focusing on family and how best to enjoy life… Read more

This video from The Mighty shares some of the things a person living with a chronic illness might want to carry around with them on a daily basis.

 

The survival pack contains some of the essentials needed to ensure you’re not caught out when going about your daily business. The video’s survival kit contains a bottle of water, daily… Read more

With PF Awareness Month just around the corner (in September) it’s important that we all work together to raise awareness for this condition!

If you’re struggling with what you can do to help raise awareness, we’ve put together some great ideas to get you started.

• Get social: Social media is one of the best tools we have to…

Read more

“Always remember you are braver than you believe, stronger than you seem, smarter than you think and twice as beautiful as you’ve ever imagined.” – Dr. Seuss

I love me some Dr. Seuss wisdom! I mean, who doesn’t? Do you like it? What’s your favorite Dr. Seuss’s quote?

I would love to know about that! Share it below! 🙂

– Marta

 

Hey everyone! I was doing some digging on the internet and found out this great books about PF! Never read any of these but they all look great. You can check the list here: Top 5 Recommended Reads for Pulmonary Fibrosis

Have any of you read any of these? If so, which one do you recommend? Which one should I chose to start my… Read more

This video from the American Lung Association demonstrates how to perform the “pursed-lip” breathing technique and explains how it can help those who are living with a chronic lung disease.

Have you ever tried it? It helps people who are experiencing shortness of breath and provides a quick and easy way to slow… Read more

Did you know that pulmonary fibrosis takes as many lives as breast cancer or prostate cancer? However, unlike breast and prostate cancer, there is no remission and treatment can only ease the symptoms. Around 40,000 people die each year from pulmonary fibrosis in the U.S. yet very few people know about the disease.

This is Elicia Shepard… Read more

Always stay positive even though it might seem hard. Even when times get darker and you think you have no more strength. Always believe in yourself and ways find the positive things that you have around you!

How do you get yourself to stay positive? Share your best tips!

Cheers,

Marta

 

It might be difficult most of the times, but it will all be worth it at the end! Never lose hope! Do you have some mottos of your own that you would like to share with us? 🙂

Would love to learn about it!

Marta

 

Essential oils are believed to have a beneficial effect on the mind, body, and spirit. Many essential oils are used to treat specific ailments or complaints.

Like herbs and minerals, the FDA does not regulate essential oils. Most medical doctors do not consider them a valid treatment for what ails you, although those who use them are… Read more

These are my plans for this weekend. How about you? What are you planning to do during the weekend?