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Hello Paul, thank you sharing the link. Good luck with your anti-fibrotic regimen. Keep us updated on how your body is reacting to the Esbriet. Best wishes, mark.

69 yrs young, in top shape until now, I will be starting Esbriet later this week and am quite nervous. Was diagnosed early Fall w IPF. Was going to take Ofev until I read this article (in French) from a VERY respected non pharma influenced, European website;

https://www.prescrire.org/Fr/202/1843/56008/0/PositionDetails.aspx

Basically it says;…[Read more]

Hello Karen, when I was on oxygen I didn’t spend too much time in the cold air. My vehicle was started so when I got in to go to work in the morning or leaving work it was warm. I didn’t encounter a cold cannula. I did wear a fleece mask for my walk to the car. Have good day, mark.

Stu is right , having latest replies at start would be better and save time scrolling down

I was born in Cleveland and lived the first 17 years of my life in the near area.  I am wondering what you are using for oxygen when you go out.  I have to use an e-tank and I find that both the tank and the tubing get really cold very quickly, even though I now live in Virginia.  If you are using this type of equipment, what are your st…[Read more]

Hi Charlene:

I am doing well and hope you are too!

Thank you for letting me know about available online support groups, I will let you know if/when I might be interested. I have been seeing a therapist 1:1 for a few months now and that has been helping (altho I still have my moments) and I am even socializing again.

Happy holidays,

Lorraine

Great tips Wendy – thanks for sharing!

Accepting a small tree so that I could decorate it with my physical limitations now would be tough, I empathize with the tears you had. Glad it looks beautiful now, and you can enjoy it. Important to ask for help, I agree. Glad you’ll have that help next year. Enjoy the holidays as best you can!
Charlene.

Hi Nan,

Thanks for your note – nicer weather today here, huh? I’m glad your PT is helping you use the spirometer and establish breathing techniques that will hopefully help! I think it would be wise – keeping in mind, I am not a medical professional – to have a 6 minute walk test done for you. Your oxygen is going to be optimal during…[Read more]

Malcom and Susan,

Hi @mal-com, and @reglois

Thanks for sticking with us through the technology difficulties. I’ve just asked our tech team to ensure both of your usernames are on our “white list” which means your content should be held, or posted without any errors. If you keep having troubles please do let me know. I’ll do my best to get us all…[Read more]

Hi Mal,

Nice to hear from you – how are the fires in your area of the world? Any more control over them and the smoke? I hope so, think of you regularly right now, along with my “family” (really are friends) in Australia who I’ve grown to love dearly. I think I’m going to come down in 2020! 🙂

Thanks for sharing this experience with us re: the…[Read more]

Thanks so much for sharing this link with us John! I remember this one, or similar links, being posted about this previously but thought it was good to re-share with people especially with newer members of our forums community. Really interesting, isn’t it? I’ve removed all my feather and down bedding, and never have had pets like birds. Hope…[Read more]

This article from Spain is older but relevant to feather pillows and comferters https://www.catalannews.com/society-science/item/feather-pillows-can-cause-a-chronic-and-eventually-fatal-breath-shortness-disease-according-to-a-catalan-study

Hi Rod,

Thanks for your note regarding the Apple Watch! I am interested in hearing from others about their thoughts surrounding this expensive little gadget. Like you, I am also only interested in the series 4 & 5 for the medical capabilities of it. It is an expensive gift for me to ask for, so I don’t know if I’ll see one under the tree but I…[Read more]

Hi @Lorraine,

I hope you’re doing well!

Wouldn’t that be great? I talked to PF News about a year ago about an online support group using a platform like Zoom but due to other projects, this one was kind of halted. There are a few online support groups out there if you’re ever interested in them, let me know and I can send you some links. Aside…[Read more]