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Charlene Marshall replied to the topic Travel Tips and Tricks in the forum Hobbies & Projects 1 month, 2 weeks ago
Hi @vangie
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] -
Steve Dragoo replied to the topic Use of Aspirin. in the forum
Research and Development 1 month, 3 weeks ago
Hi Joe,
I just posted a long answer here but it looks like it disappeared. Please let me know if you can see it. Otherwise, I will try to recreate it for you.
Stay well…
Steve -
Steve Dragoo replied to the topic Use of Aspirin. in the forum Research and Development 1 month, 3 weeks ago
Yes I consider the placebo effect on all I take but that would wear off over time as ”reality” sets in.
Having worked in medical in the USN, I try to be acutely aware of mental/physical changes but at best those will be subjective for several reasons. The progressiveness of IPF seems to slowly affect the brain and of…[Read more]
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Steve Dragoo replied to the topic Shortness of breath and how to catch it in the forum Diagnosis Information and General Questions 2 months ago
Hi Frank,
What is your heart rate? PAH cause my heart to work hard which creates shortness of breath sometimes. Also, O2 bottles go to 11+ L, and try wearing a face mask.
Stay well.
Steve -
Steve Dragoo replied to the topic Use of Aspirin. in the forum
Research and Development 2 months ago
Hi Joe,
I’ve been taking baby aspirin enteric coated for a very long time. After a white paper was published here sometime last year, I increased to 3 baby aspirin 2x with no noticeable side effects and I take many other supplements as well.
Stay well…
Steve -
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]
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Steve Dragoo replied to the topic Comparing portable oxygen concentrators in the forum Living with Pulmonary Fibrosis: 50+ 2 months, 1 week ago
Hi Friend,
Glad to see you here. Fortunately, I am not on O2 other than at night and on the rare occasion, I need it wandering at home. Sometimes walking I wish I had one but that is mostly my heart rate jumping a lot – don’t walk far anymore either.
Somewhat my fear is the very long flight from the Philippines back to t…[Read more]
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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]
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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?
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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]
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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, 4 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]
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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]
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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]
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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
Hi Roger,
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 🙂
Char. -
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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Charlene Marshall started the topic The Importance of Patient-Centered Care in the forum Join the Discussion: Welcome to all PF/IPF Patients 4 months, 1 week 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]
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Steve Dragoo and
Jeff Molloy are now friends 4 months, 1 week ago
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Charlene Marshall started the topic How Can Others Support Those Living with PF? in the forum Living with Pulmonary Fibrosis: 50+ 4 months, 1 week 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]
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Luis Pernia replied to the topic Deep Tissue (or red light) Laser Therapy in the forum Using Our Forums 4 months, 1 week 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.
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Steve Dragoo replied to the topic Who Has Inspired You? in the forum Join the Discussion: Welcome to all PF/IPF Patients 4 months, 2 weeks ago
Hello Friend,
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]
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