Charlene Marshall

Hi Reshma,

Thanks so much for your note, it is nice to hear from you. It has been awhile, and I am doing fairly well thanks. I appreciate an update on your Mom, but sorry to hear the days are so difficult for her. This disease sure is cruel!

Unfortunately, weight loss is something a lot of patients experience with this disease I’ve heard. They…[Read more]

Hi Sue,

Thanks for sharing! I’m pretty satisfied with Respironics in general, and I hear good things about them from many others as well, but I agree re: the weight. I’m glad you have yours in backpack form, that is handy! You can also buy 02 tubing off Amazon if you needed some in the interim or as back-up until the oxygen people get there, just…[Read more]

Hi Susan,

I use the Respironics SimplyGo machine, which has a continuous 02 flow of 2LPM and pulse up to 6LPM. Sometimes when I am going something more strenuous and require extra oxygen, I use my little D tank and strap it on my back instead. The only complaint about this POC is it’s weight, it is quite heavy for me and when I’m out, I’m…[Read more]

Hi @joehick0529

I hope you’re doing well.

The study references the Teavigo brand of EGCG. From an email correspondence with them, this is what they recommended verbatim: “A few brands that we know well and would recommend include Healthy Origins, Pure Encapsulations and Swanson”

They also mentioned ensuring the product includes the Te…[Read more]

Hi David,

So nice to hear from you – thank you for sharing your experience with Ofev in the UK. I’m sure @terib3294 will find your response helpful too!

For patients with an FVC under 50% who have to come off Ofev or Esbriet, are they then evaluated for transplant (if they qualify)?

Thanks for sharing and I hope you’re doing well.
Charlene.

Hi Sita,

Thanks for your post, good questions about oxygen – I know it can be overwhelming with all the 02 information. Do you have access to your Mom’s oxygen provider company? They would be best to answer these questions as they may pertain to her machine specifically. Does she use both a home and portable oxygen concentrator (POC)?

I…[Read more]

Hi Floyd,

Thanks so much for writing and sharing your experience with Esbriet. I’m glad you don’t suffer any of the side effects, that is great to hear. It’s so frustrating when the specialists don’t know about IPF isn’t it, I’m glad the second opinion/doctor that specializes in IPF had some solutions for you that have helped. We appreciate you…[Read more]

Hi @mary-echberg ,

Thanks so much for writing! Yes, unfortunately due to GDPR (data protection regulations) we can only offer survey participation right now to US residents. Thank you for being willing to contribute though, I wish I could as well but can’t as a Canadian citizen. I appreciate your willingness to help us though!

I’m really glad…[Read more]

Hi @terib3294 ,

A wonderful forums member by the name of David sent me an email regarding his experience with Ofev in the UK. He shared with me the following: “Ofev in the UK. They will only prescribe Ofev when the FVC is at 80 or below”. Does this sound similar to your experience?

Thanks for sharing Karen – I have a ‘niggly’ about the spelling of scarring as well. It’s funny you mentioned that, as I am guilty of sometimes leaving out that second ‘r’ 🙂 I hope the appetite increases for you, but definitely glad the GI side effects and others have subsided a bit from the Esbriet. Hope it continues to benefit you, take care…[Read more]

Hi @judyf

I was with you, had never thought of furniture having down/feathers! Im glad John shared the article, but now doing some more research in terms of what my furniture is made of. It never ends sometimes!
Take care,
Char.

@michael

Hi Michael,

I’m sad to have just learnt about your attendance at the PFF Summit in San Antonio! I was also there, and loved all the learning, networking and opportunities that were generated from those few days. Thank you so much for putting together the OneDrive folder of information, that is so generous for you to share it with…[Read more]

Wow @caneelbay1 – thanks so much for sharing this John! I never would have thought furniture would also have feathers in it, just when I thought I’d done everything to protect my lungs. Gosh! Thanks for sharing, this information will undoubedtly help others on here as well.

Char.

@terib3294

Hi Teri,

Thanks so much for writing! So sorry I don’t have much to contribute here, as I am neither in the UK or US. I know there are some members of the UK on here though, who I hope can help and can share their experience of using Ofev in the UK. Let me know if you don’t get any responses, and I’ll see if I can obtain any more…[Read more]

Hi Jason,

Thanks for clarifying – I misunderstood your question! 🙂
I can understand your family members being worried about a predisposition to IPF, although I wouldn’t imagine a direct link can be made between cats/dander/litter and IPF. I’ve not read any studies on that, nor can I recall hearing any patient say their doctor’s made that…[Read more]

Hi Sue,

Thanks for writing and sharing your thoughts with us. Most definitely, the anti-fibrotic drugs and their potential side effects are not for everyone and glad you’ve made a decision that is best for you, that is very important. Happy soon-to-be (or belated) birthday this week 🙂

Take care,
Charlene.