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Charlene Marshall replied to the topic When You Don't Want to Talk About PF Appointments in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 week, 3 days ago
I’m sorry to hear that they don’t Jeannine. Know that we are here for you on these forums!
Take care,
char. -
Charlene Marshall replied to the topic When You Don't Want to Talk About PF Appointments in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 week, 3 days ago
I’m sorry to hear that they don’t Jeannine. Know that we are here for you on these forums!
Take care,
char. -
Charlene Marshall replied to the topic When You Don't Want to Talk About PF Appointments in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 week, 3 days ago
Gayle, I love the ending to this post as it made me laugh. Thank you! Puppies are the best and I’m glad he’s become a positive topic of conversation for you 🙂
Take care,
Char. -
Charlene Marshall replied to the topic When You Don't Want to Talk About PF Appointments in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 week, 3 days ago
Hi Julia,
Thanks for sharing your thoughts on my post … I completely agree: talking about the disease all the time is tiring both emotionally and physically and its hard to convey just how serious it is. Hang in there and know that we’re hear for you on this forum.
Charlene. -
Charlene Marshall started the topic When You Don't Want to Talk About PF Appointments in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 week, 5 days ago
For the last few days, I’ve been in a really strange mood. I had a pulmonology appointment last Wednesday which did not go well, so perhaps I am processing that information and I’ll come around. For now though, I’m not wanting to talk about that appointment or the specifics of it, and I’m finding myself irritable with friends and family…[Read more]
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Charlene Marshall replied to the topic Handling Power Outages While Using Supplemental 02 in the forum Living with Pulmonary Fibrosis: 50+ 2 weeks ago
Hi Mille,
Thanks for sharing – sounds like you’re well-equipped to handle power outages while using oxygen, which is great. I’m you’ve notified your service providers too, that is a step a lot of people forget. One other thing that eases my mind, which people maybe don’t think of, is accessing the car as a power source for our 02…[Read more]
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Charlene Marshall replied to the topic Portable Oxygen for Paddling in the forum Using Our Forums 2 weeks ago
@gefki
Hi Glenn:
I was very intrigued by your post as I am an avid watersports fan as well. I enjoy kayaking and paddleboarding, though I run out of breath while trying to keep my balance standing on the paddleboard; its just as fun sitting down or kneeling. I take my oxygen with me on both devices! I use a D-sized cannister (the new term for…[Read more]
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Charlene Marshall started the topic Handling Power Outages While Using Supplemental 02 in the forum Living with Pulmonary Fibrosis: 50+ 3 weeks, 1 day ago
As you can imagine, losing power for an extended period of time is very anxiety provoking when you require supplemental oxygen to breathe. Many of us living with idiopathic pulmonary fibrosis (IPF) have access to both 02 tanks and portable oxygen concentrators (POCs). The former doesn’t require power to operate, although they don’t last long…[Read more]
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Charlene Marshall started the topic Humidity & IPF in the forum Canadians Living with Pulmonary Fibrosis 3 weeks, 5 days ago
I think one of the hardest things about living with idiopathic pulmonary fibrosis (IPF) is the fact that it affects everyone differently. It is really helpful to be able to speak with other patients on platforms such as this one because inevitably we share common experiences; however, there are often differences too.
I was recently talking…[Read more]
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Charlene Marshall replied to the topic Zinc in the Role of Lung Fibrosis in the forum Pulmonary Fibrosis Awareness & Advocacy 4 weeks ago
Hi Jane,
Thanks for contributing your thoughts and experiences to this thread; lots of information shared here about Zinc. I’m glad to hear your doctor encouraged you to try it, as their seems to be mixed physician thoughts on its use. Also glad to hear you’re tolerating Esbriet – I know the gastrointestinal issues can be really bad from Ofev.…[Read more]
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Charlene Marshall replied to the topic Is My Disease Worsening? in the forum Living with Pulmonary Fibrosis: 50+ 1 month, 1 week ago
Thanks for sharing your experience Dennis and wishing you goodluck on your upcoming breathing test. I have one at the end of July too! Campfire smoke bothers me a lot as well, and I always have to sit downwind of it if I join my cousins around the fire at the cottage. Glad to hear you think Ofev is helping you though! Have you tried the sublingual…[Read more]
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Charlene Marshall replied to the topic Is My Disease Worsening? in the forum Living with Pulmonary Fibrosis: 50+ 1 month, 1 week ago
Hi Virginia,
Thank you for being so vulnerable and brave with sharing how this disease is impacting you. I hate it too, and I’m so sorry you’re dealing with it!
Earlier today someone told me that it was refreshing to simply hear someone say they hate IPF and it was equally therapeutic for me to say. Please don’t ever feel like you…[Read more] -
Charlene Marshall replied to the topic Is My Disease Worsening? in the forum Living with Pulmonary Fibrosis: 50+ 1 month, 1 week ago
Thank you so much for sharing this information, I have no doubt that it will be extremely helpful for others! I really appreciate having this information myself too, so thank you.
Charlene. -
Charlene Marshall replied to the topic Is My Disease Worsening? in the forum Living with Pulmonary Fibrosis: 50+ 1 month, 1 week ago
Well said Norm! I find this forum so helpful because its filled with people who truly “get it” and what its like to live with this terrible disease.
Please don’t anyone feel like you have to apologize for venting – we’re here for you!
Char. -
Charlene Marshall replied to the topic Is My Disease Worsening? in the forum Living with Pulmonary Fibrosis: 50+ 1 month, 1 week ago
Hi Phil,
I often have trouble sleeping but its because my mind races vs. symptoms of this pesky illness. I actually take a melatonin – very low dose – every night to help me sleep and shut my brain down. Mindfulness helps me too; not for everyone but something that is effective for me. May be worth talking to your doctor about in case its somehow…[Read more]
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Charlene Marshall started the topic Is My Disease Worsening? in the forum Living with Pulmonary Fibrosis: 50+ 1 month, 1 week ago
Despite being diagnosed with idiopathic pulmonary fibrosis (IPF) in 2016, I’ve really only noticed an increased sensitivity to secondhand smoke in the last couple of years. I have written about this a couple of times in the following columns: Protecting Yourself from Secondhand Smoke and How to Help When PF-related Trauma Shows Up Unexpectedly.…[Read more]
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Charlene Marshall replied to the topic Zinc in the Role of Lung Fibrosis in the forum Pulmonary Fibrosis Awareness & Advocacy 1 month, 2 weeks ago
I am also curious about this Charles, and would love to hear from anyone who has spoken with their physician about zinc.
Char. -
Charlene Marshall replied to the topic Zinc in the Role of Lung Fibrosis in the forum Pulmonary Fibrosis Awareness & Advocacy 1 month, 2 weeks ago
Oh interesting @philipryan… I am also curious as to why she advised against it? Did she give you any insights into that?
Char. -
Charlene Marshall replied to the topic Generic Version of Esbriet Available in the US. in the forum Esbriet (Pirfenidone) 1 month, 2 weeks ago
Hi Pete,
Wow, thank you so much for sharing your experience with the generic version of Esbriet and the respective costs; it’s always so helpful to hear a first-hand experience. I hope this number reflects the real cost on the bill as well! So happy for you with the reduction of this astronomical cost for this drug.
Char.
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Charlene Marshall replied to the topic Mental Health & Chronic Illness Advice in the forum Living with Pulmonary Fibrosis: 50+ 1 month, 3 weeks ago
Thanks for sharing your story with us, Nina! I’m glad you sought out a second opinion from another doctor as well as I was shocked to read one actually gave you a year you’d likely live until – that’s absurd in my opinion. Glad the second doctor was so helpful and that you proactively took care of yourself by doing things like putting in the swim…[Read more]
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