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Marta Ribeiro started the topic 30 Days of PF: Finding Peace in the forum 30 Days of PF 1 year, 4 months ago
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 relish…[Read more]
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Marta Ribeiro started the topic 30 Days of PF – What PF Has Taught Me in the forum 30 Days of PF 1 year, 4 months ago
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 beg…[Read more]
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Marta Ribeiro started the topic 30 Days Of PF – My Transplant Story in the forum 30 Days of PF 1 year, 4 months ago
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 t…[Read more]
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Marta Ribeiro started the topic Pulmonary Fibrosis Foundation Releases Online Educational Materials in the forum Pulmonary Fibrosis Awareness & Advocacy 4 years ago
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 a…[Read more]
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Marta Ribeiro started the topic What to Consider If You're Asking a Patient to Become an Advocate in the forum Pulmonary Fibrosis Awareness & Advocacy 4 years ago
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 focus…[Read more]
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Marta Ribeiro started the topic 3 Tips for Setting Intentional New Year’s Resolutions in the forum Young Adults Living with Pulmonary Fibrosis (40 & Under) 4 years, 1 month ago
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 las…[Read more]
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Marta Ribeiro started the topic 6 Ways to Get the Most Out of Your Doctor’s Appointments in the forum Upcoming Medical Appointments: Q&As 4 years, 1 month ago
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 appointmen…[Read more]
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Marta Ribeiro started the topic 3 Professionals to Talk to Before Traveling With PF/IPF in the forum Diagnosis Information and General Questions 4 years, 1 month ago
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 progresses.…[Read more]
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Marta Ribeiro started the topic Prognosis Is Just A Number: Living for Quality vs. Quantity in the forum Diagnosis Information and General Questions 4 years, 1 month ago
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 mor…[Read more]
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Marta Ribeiro started the topic Explaining Oxygen Therapy for Pulmonary Fibrosis Patients in the forum Diagnosis Information and General Questions 4 years, 1 month ago
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 fibrosis…[Read more]
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Marta Ribeiro started the topic 6 Pulmonary Fibrosis Diagnostic Tools in the forum Diagnosis Information and General Questions 4 years, 1 month ago
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. Chest…[Read more]
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Marta Ribeiro started the topic VeinViewer Will Help Nurses With IVs and Blood Tests in the forum Diagnosis Information and General Questions 4 years, 2 months ago
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 Vei…[Read more]
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Marta Ribeiro started the topic 7 Health Benefits of Vitamin D in the forum Diagnosis Information and General Questions 4 years, 2 months ago
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 effec…[Read more]
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Marta Ribeiro started the topic Personalized Care for Idiopathic Pulmonary Fibrosis in the forum Diagnosis Information and General Questions 4 years, 2 months ago
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.
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Marta Ribeiro started the topic Explaining the Symptoms of Idiopathic Pulmonary Fibrosis in the forum Diagnosis Information and General Questions 4 years, 2 months ago
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 clubbing…[Read more]
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Marta Ribeiro started the topic How to Tell Others You Have Pulmonary Fibrosis in the forum Diagnosis Information and General Questions 4 years, 2 months ago
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, partic…[Read more]
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Marta Ribeiro started the topic How to Travel With Pulmonary Fibrosis If You’re on Oxygen in the forum Diagnosis Information and General Questions 4 years, 2 months ago
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 such…[Read more]
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Marta Ribeiro started the topic How to Live for the Moment With Pulmonary Fibrosis in the forum Living with Pulmonary Fibrosis: 50+ 4 years, 2 months ago
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 fibrosis[Read more]
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Marta Ribeiro started the topic Dealing With Life Milestones When You Have Pulmonary Fibrosis in the forum Young Adults Living with Pulmonary Fibrosis (40 & Under) 4 years, 2 months ago
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 had…[Read more]
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Marta Ribeiro started the topic Top 5 Recommended Reads for Pulmonary Fibrosis in the forum Diagnosis Information and General Questions 4 years, 2 months ago
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 p…[Read more]
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