Public Group
active 1 week, 4 days agoGroup Admins
This group unites PF patients, caregivers, researchers and medical professionals in a platform to discuss the latest research and medical advances related to PF. Information shared in this group is public and therefore can be read, shared and discussed by all members. Everyone’s contributions are welcome and encouraged.
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donna posted an update in the group
Research and Development 1 week, 4 days agoI wish I knew, thought I might find some data here
recently diagnosed ild. they are pushing for a lung biospy, scares the daylights right out of me
all that I have read leads me to think it isn’t the holy grail -
donna joined the group
Research and Development 1 week, 4 days ago -
Sofia joined the group
Research and Development 2 weeks, 4 days ago -
Cindy Sears joined the group
Research and Development 1 month, 1 week ago -
Tom Pratt joined the group
Research and Development 1 month, 2 weeks ago -
Faye Smithers joined the group
Research and Development 2 months, 2 weeks ago -
Jim McCool joined the group
Research and Development 2 months, 3 weeks ago -
Patricia DuBose joined the group
Research and Development 2 months, 3 weeks ago -
FARIA'AH BT CHIK joined the group
Research and Development 3 months, 2 weeks ago-
thanks for adding me.
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Sandy Emler joined the group
Research and Development 3 months, 3 weeks ago-
This is challenging for me to sign on and post but we’ll see if this time it works. I am a writer and have found writing down my experiences helps me “see” how I really feel about things and not how I think I am supposed to feel. When I first began to use oxygen full time, I was embarrassed to have to travel with tank and tubes but soon realized…[Read more]
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Hello Sandy, thank you for commenting. Everything you do everyday is inspiring Sandy. This is a terrible disease and you have a fabulous attitude. Keep doing what you do. Enjoy your days and keep as active as your body will allow. I’m glad you figured out the writing for the page but if you have trouble again you can always ask Charlene or m…[Read more]
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Thanks Mark. Now to get my response in the correct place!
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Hi Sandy, is there a particular forum or topic you would like to respond to?
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Connie Lum replied to the topic Pulmonary Fibrosis Journal in the forum
Research and Development 3 months, 3 weeks agoHi Katie- I think a journal is a wonderful idea. I’ve tried to write a journal off and on for years. But had difficulty keeping it up. It would be interesting to see how my journey goes. I feel like I don’t even have IPF. Which is a good thing and to chronicle my journey. A doodling space is a great idea. Perhaps some ideas of what to write for…[Read more]
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Connie Lum joined the group
Research and Development 3 months, 3 weeks ago -
Susan Howitt joined the group
Research and Development 3 months, 3 weeks ago -
Malcolm Mann posted an update in the group
Research and Development 3 months, 3 weeks agoHi Katie
The makers of Ofev provide a small simple journal here in Australia, it has columns for ofev taking, side effects, treatments, exercise, how you feel etc, questions for doctors and room for limited extra entrys. I find it useful, I record walking, swimming, gym, where we are what we’re up to. Cheers
Mal -
Malcolm Mann joined the group
Research and Development 3 months, 3 weeks ago -
Charlene Marshall replied to the topic Pulmonary Fibrosis Journal in the forum
Research and Development 3 months, 3 weeks agoHi Katie,
So nice to hear from you! 🙂
I think this is a great idea, especially for those of us who like to journal/write. I’ll have to give it some more thought in terms of what to include in it, but I like the idea of tracking medications, perhaps workout times/goals and then a space to just doodle or journal? I find doodling with no specific…[Read more]
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Katie Bagshawe started the topic Pulmonary Fibrosis Journal in the forum
Research and Development 3 months, 3 weeks agoSo, I’ve had an idea I’ve been sitting on for some time and at present I’ve got a couple of weeks free before I start my studies in September so thought I would commit some more time to it. I’m an avid diary writer which is something I picked up from my Dad who was meticulous at filling one out for years, and it was something I encouraged him to…[Read more]
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FARIA'AH BT CHIK joined the group
Research and Development 4 months ago -
Mike Spiva posted an update in the group
Research and Development 4 months, 1 week agoI found an article where the medicine Medformin for Diabetes has been tested in mice to find it reverses PF. does anybody know anything about this or have taken it?? https://www.mdmag.com/medical-news/metformin-could-accelerate-idiothatic-pulmonary-fibrosis-reversal
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Mike, it appears this research is in the initial research stage as they stated they are hoping to offer this to a large human population in phase 2. Clinical trials can be found on the pulmonary fibrosis foundation. If you search the forums I recently wrote a topic regarding how to find clinical trials. I hope this helps. Mark
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Mark, you are amazing! I appreciate you very much!
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Hey Mike, you are appreciated too. Keep asking questions, offer suggestions, and stay active. Thank you, Mark.
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Mike Spiva joined the group
Research and Development 4 months, 1 week ago - Load More
Hello Donna, have they completed the high density cat scan on you? Sometimes this is all they need. I did have the biopsy and I didn’t have any complications. I was home on the third day without any pain. Everything before that was inconclusive and the biopsy reaffirmed the diagnosis of ipf. Mark