Charlene Marshall replied to the topic Using supplemental oxygen in the forum Diagnosis Information and General Questions 1 day, 5 hours 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?
Charlene Marshall started the topic Sunday "Resets" in the forum Living with Pulmonary Fibrosis: 50+ 6 days, 1 hour 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 1 week, 5 days 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+ 2 weeks, 5 days 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 weeks, 4 days 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 weeks, 5 days 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 weeks, 5 days 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]
Charlene Marshall started the topic The Importance of Patient-Centered Care in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 month, 2 weeks ago
As patients living with chronic and progressive diseases like idiopathic pulmonary fibrosis (IPF), it is inevitable that we will experience hospitalization at some point. Whether that be proactively ahead of a test or procedure, or reactively due to an exacerbation, illness, or disease progression; it is likely something you have or will…[Read more]
Steve Dragoo and Jeff Molloy are now friends 1 month, 3 weeks ago
Charlene Marshall started the topic How Can Others Support Those Living with PF? in the forum Living with Pulmonary Fibrosis: 50+ 1 month, 3 weeks ago
As my disease progresses and my physical abilities lessen, I am often asked how others can support me. This is especially true in my workplace and oftentimes, I don’t know what to tell them.
Sadly, idiopathic pulmonary fibrosis (IPF) is mostly an invisible illness, with the exception of supplemental oxygen use if patients have progressed to…[Read more]
Luis Pernia replied to the topic Deep Tissue (or red light) Laser Therapy in the forum Using Our Forums 1 month, 3 weeks ago
Hello, I understand from my wife, with the treatment with esbriel. they cannot carry sunlight and less infrared on the skin. I don’t know what you guys can think.
Steve Dragoo replied to the topic Who Has Inspired You? in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 month, 3 weeks ago
I think of you every day and know winter is a struggle – for me, it is usually February as I get cabin fever and want to be outside even sleeping in the snow as I did when younger. On the other hand, every time I show my wife a picture of some beautiful snow-covered bucolic landscape her comment is, ”I will…[Read more]
Charlene Marshall started the topic Who Has Inspired You? in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 month, 4 weeks ago
Like Christie has shared, January is a difficult month for me every year. Here in Canada, January is a very long, cold, and dreary month and this year there is no shortage of grey days; the sun hasn’t been out for a full day since before Christmas! While I’m not officially diagnosed with seasonal affective disorder (SAD), I really struggle…[Read more]
Steve Dragoo posted an update 1 month, 4 weeks ago
Where did you get your Class 4 and how do you use it?
Steve Dragoo replied to the topic Larry Runyon in the forum In Loving Memory 1 month, 4 weeks ago
You are not alone in this journey. Be blessed and reassured you will meet again.
Luis Pernia replied to the topic Has anyone seen the film "More Than Ever" about an IPF patient? in the forum Diagnosis Information and General Questions 1 month, 4 weeks ago
Hello Franco, not really, but if you saw it and have something to contribute, please do.
It’s more interesting when you comment on something in particular.
I hope to read you.
Steve Dragoo replied to the topic Metformin Useage as Treatment for IPF in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 months, 1 week ago
A number of pharmacies will provide metformin at a love cost probably about the same as the co-pay but I do not know if they require a prescription.
I have used metformin for 12 years and can’t tell if it has helped my IPF or not. I do use a bucket of supplements daily however.
Paul B ~ Lakeland changed their profile picture 2 months, 2 weeks ago
Charlene Marshall started the topic Welcome 2023! in the forum Living with Pulmonary Fibrosis: 50+ 2 months, 3 weeks ago
Somehow another year has come and gone, and I remain as grateful as ever for the members on this forum. For another year, you have selflessly shared your personal experiences with others, inevitably making their journey a little easier. You have helped each other advocate for yourselves, laugh and virtually wiped away tears while navigating…[Read more]
Steve Dragoo replied to the topic just want to share some of my experience in the forum Canadians Living with Pulmonary Fibrosis 2 months, 3 weeks ago
I had phlegm but nearly stopped it by using Serrapeptase. Started it over 4 years ago and take 720,000 SU nightly on an EMPTY stomach and NO other meds for 3 hours on either side. You can start at 480,000 SU.
Serrapeptase sees pills as dead protein, it dissolves them faster. Did that once with niacin – wish I h…[Read more]
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