Charlene Marshall started the topic Reactions to people vaping as an IPF patient. in the forum Young Adults Living with Pulmonary Fibrosis (40 & Under) 2 weeks, 4 days ago
Despite being diagnosed with idiopathic pulmonary fibrosis (IPF) at 28, I did not treat my lungs poorly. I never smoked as a youth or young adult, nor was I exposed to secondhand smoke or mold in my childhood. Additionally, I was always active and rarely caught respiratory infections as a child so, unfortunately, my diagnosis is truly…[Read more]
Charlene Marshall started the topic Managing springtime allergies in the forum Living with Pulmonary Fibrosis: 50+ 3 weeks, 3 days ago
I’m confident we’ve discussed allergies on our forums platform before, but each spring I’m reminded of specific allergens that make my respiratory symptoms worse. With a disease like idiopathic pulmonary fibrosis (IPF), I don’t need anything to exacerbate the shortness of breath and cough I already have on a regular basis.
This year, I noticed…[Read more]
Charlene Marshall replied to the topic Good site for information on all things to do with PF in the forum Diagnosis Information and General Questions 3 weeks, 4 days ago
Thank you for your kind words, and I’m thrilled this forum has been helpful to you… it sure has been a labour of love and wouldn’t be possible without the vulnerability and contributions of everyone here. I think the patient-to-patient sharing is what makes this site so special, of course I am bias though ;). I’m also thrilled to hear…[Read more]
Charlene Marshall replied to the topic Good site for information on all things to do with PF in the forum Diagnosis Information and General Questions 3 weeks, 5 days ago
Agreed Scott, the Pulmonary Fibrosis Foundation’s website is a wealth of knowledge about this disease. I encourage folks to use it as one of their primary (if not their primary) source of information about IPF. Take care!
Charlene Marshall replied to the topic Depression in the forum Using Our Forums 3 weeks, 5 days ago
Thank you all for sharing your insights in response to @Stella ‘s question about depression. Unfortunately, I think this is a very common “side effect” of IPF, especially with the way many doctors diagnose us and inform us of prognosis’ that are outdated (ie. 3-5 years to live). I’m glad conversations are happening across patient platforms on how…[Read more]
Charlene Marshall replied to the topic continue OFEV if my CT and PFTS are worsening? in the forum Ofev (Nintedanib) 1 month, 2 weeks ago
I couldn’t agree more Diane, thanks for sharing this! Pulmonary rehabilitation has helped me tremendously over the years as well and I wish it was recommended more.
Charlene Marshall replied to the topic Doctors making little sense despite severe symptoms in the forum Using Our Forums 1 month, 2 weeks ago
I am so sorry you’re having this experience! I always say unless someone has experienced true breathlessness, they have no idea how terrifying it is and I’m very sorry the doctors won’t listen to you by the sounds of it. Chalking it up to anxiety must be so infuriating! It sounds like you might need to “prove” your hemodynamics (ie.…[Read more]
Charlene Marshall replied to the topic Aspirin used in therapy in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 month, 2 weeks ago
Thanks for your post. I’m not sure if you’re thinking of Steven Baum who is the MD on our site and relatively active with sharing some relevant and credible research and resources for IPF? If so, he doesn’t have IPF but does treat patients with it. He has another rare disease but it isn’t IPF, just so you have that…[Read more]
Charlene Marshall replied to the topic All IPF Clinical Trials in the forum Clinical Trials 1 month, 2 weeks ago
Thanks John! This website is indeed the most credible site to find IPF studies or clinical trials, many of the others are not vetted for credibility, however, this one is. Thanks for sharing for our members!
Charlene Marshall replied to the topic Travel Tips and Tricks in the forum Hobbies & Projects 1 month, 2 weeks ago
thanks for sharing a bit about your story and upcoming snorkelling adventures – I love to snorkel, it’s one of my favourite travel-related activities but I admit, it is getting a lot harder. A couple of tips that have made it a little easier for me include:
1. Keep your oxygen nearby (ie. on the boat you’re snorkelling from or on the…[Read more]
Charlene Marshall started the topic Deciphering spring allergies from worsening PF symptoms in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 months, 1 week ago
I love the spring season! After a long, dark, and cold winter here in Canada, nothing lifts my spirit quite like warmer days and sunshine. As much as I enjoy this time of year, I also feel a bit of anxiety about whether my disease is worsening because my symptoms of idiopathic pulmonary fibrosis (IPF) tend to be more intense as the seasons…[Read more]
Charlene Marshall started the topic Comparing portable oxygen concentrators in the forum Living with Pulmonary Fibrosis: 50+ 2 months, 2 weeks ago
There has been a lot of correspondence on the PF forums lately about portable oxygen concentrators (POC) – thank you all for the rich discussions!
Early on in my diagnosis, and based on my prescribed need for oxygen and my active lifestyle, I had a really hard time deciding which POC would work best for me. Most often I’d recommend…[Read more]
Charlene Marshall replied to the topic Using supplemental oxygen in the forum Diagnosis Information and General Questions 2 months, 2 weeks ago
Thanks for your comment John. I also have the Phillips Respironics SimplyGO POC and my only compliant is that it is heavy! I also had to get a backpack, which has made it a lot more manageable and its the POC that works best for me, hands down. Might be worth exploring as well @fmarzetta?
Libby Fisher replied to the topic Hiatus Hernia in the forum Diagnosis Information and General Questions 2 months, 2 weeks ago
I have had ILD for 5 years now. I had an endoscopy 3 years ago when my stomach was really acting up (starting on the Ofev!) and a hiatal hernia was diagnosed. My GI doctor said that about 65% of people over the age of 55 develop this type of hernia…so it is extremely common and she did not think (in my case anyway) that it had…[Read more]
Charlene Marshall started the topic Sunday "Resets" in the forum Living with Pulmonary Fibrosis: 50+ 2 months, 3 weeks ago
It’s no secret that idiopathic pulmonary fibrosis (IPF) is an exhausting illness for patients, both mentally and physically. I am very protective of my Sundays lately and do not commit to doing anything except things around the house that will set me up for a successful work week.
I enjoy a hot cup of coffee out of a cup (vs. a travel mug…[Read more]
Charlene Marshall started the topic Bone Density Issues for IPF Patients in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 months, 3 weeks ago
I really enjoy reading along to many of the conversation topics that are started on this site. I looked closely at the Prednisone and Vitamin D thread, as I am vitamin D deficient and take a prescription dose of 50,000 IUs once per week. Surprisingly, many of my fellow IPF patients I’ve spoken to have also discovered they are low on vitamin D.…[Read more]
Charlene Marshall started the topic Weight Management is Hard with IPF in the forum Living with Pulmonary Fibrosis: 50+ 3 months ago
To my fellow IPF patients: is weight something your doctor discusses with you at routine appointments?
I’ve heard from some patients it is, whereas other people say their doctors never bring it up. I wanted to write this forum post about how difficult it is to maintain a healthy weight while living with IPF. Whether the goal is to gain or lose…[Read more]
Charlene Marshall started the topic Let's Unite for Rare Disease Day 2023! in the forum Pulmonary Fibrosis Awareness & Advocacy 3 months, 1 week ago
I enjoy celebrating Rare Disease Day (RDD) each year, which falls on the last day of every February. That means RDD is today! This day gives me a chance to help raise awareness for the rare disease that complicates my life; living with idiopathic pulmonary fibrosis (IPF) as a young adult is hard. It’s hard for all of us who deal with this…[Read more]
Charlene Marshall replied to the topic Ofev and Plaquenil in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 months, 1 week ago
Does your local transplant hospital (or the nearest one) have a support group, either virtual or in-person? Sometimes they have disease-specific groups or even age-specific which I find a lot more relevant than some of the generic PF groups online. Just a thought if you haven’t checked there 🙂
Charlene Marshall replied to the topic cooking fumes in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 months, 1 week ago
Hi @mehta & @msherbert
Thank you both for starting this conversation! Sadly I agree, there are a lot of environmental and occupational hazards that people aren’t aware of that can cause damage to the lungs. I’ve never heard of home kitchen fumes being problematic but it likely depends on what you’re cooking. I know for me, even if I accidentally…[Read more]
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