Charlene Marshall

Hi Everyone,

Thank you for sharing this post with us @lorraine . Please note: I approved this with caution, because while Apple is very good at what they do and their tools are useful in our every day lives; I’d encourage screening tools only from credible health sources like the CDC or World Health Organization (WHO). This is a good r…[Read more]

Hi @lorraine ,

Thank you for sharing this – I would imagine many others will be interested in learning about it! Hope you’re doing well.
Charlene.

Hi Don,

Thanks so much for contributing your thoughts to this thread! I think it is important to focus on some good amidst the chaos, and I couldn’t agree with you more regarding humour. That is really important during these tough times! I’m glad you focus on the needs of your patients so deeply, and consider how you want them to see you. Shows a…[Read more]

Hi Reshma,

It’s truly my pleasure – I just wish I could do more, and say / give advice with confidence. I only have my personal patient experience to rely on. Finding a balance between rest and exercise for your Mom is an excellent idea; something I am still trying to find myself and do well. Please do keep me updated on how she is doing, I think…[Read more]

Hi Phil,

Thanks so much for getting back to me and sharing more about your experience with OFEV I’m glad you were able to start on the drug quickly – I know many who unfortunately struggle to get it. I’m also glad to hear you’ve not had a lot of side effects, that is wonderful news. Thanks so much for sharing and wishing you the best!
Charlene

Hi Reshma,

Thanks so much for getting in touch and letting us know how your Mom is doing. The struggle really sound so tough, I’m sorry to hear of this. As for the walking, this probably is a good idea (just based on my experience, which is not an MD and in no way a medical expertise) but I can’t direct you on how to proceed here. You should talk…[Read more]

@williesmom

Hi Jane,

Thanks for writing – it is nice to hear from you, though so sorry to hear of the unpleasant side effects of Ofev. The 150 mg dose twice daily sure can be tough on our system! It is hard to know if a reduction to the 100/ 2x daily will reduce your side effects, because everyone tolerates the drug so differently. However, I…[Read more]

Thanks for sharing your experiences with us re: Ofev Don! It seems everyone experiences this drug a little differently, so I have no doubts your comment will help others. Thanks for sharing 🙂 Charlene.

Hi Ross,

Thank you so much for chiming in to this topic thread and sharing a bit of your story with us. That said, so sorry to hear of your Mom’s passing from this cruel disease, and then your own diagnosis. I can imagine that must have been very frightening! It is so easy for us to dismiss the symptoms of IPF and attribute them to more common…[Read more]

Hi Sarv,

Thanks so much for writing to us and sharing a bit more of your wife’s story. Gosh I can’t wait for the day a cure is found for this cruel disease! You’re right, it is heart wrenching to hear how many people are impacted by it and how all of our experiences are so very different. Sorry to hear of your wife’s exacerbation – were the…[Read more]

Hi jill-tanner ,

Nice to hear from you! I’ve been thinking of many of my Australia friends and hope you’re keeping safe. I think (by the sounds of it) Australia is a bit behind in the spread of the pandemic compared to North America and Europe, am I correct? I hope the lockdown helps prevent the spread of the disease! I would imagine Canada is…[Read more]

Ah bummer, sorry to hear this Terry! All national parks and local playgrounds as well have been closed here. Please do drive to the beach if you can, for those of us who love the ocean more than anything else and can’t be there. Northern California is on my list some day – I want to do some wineries in Napa! Enjoy the time outside when you can and…[Read more]

Hi @steve-dragoo, so nice to hear from you my friend! I think the post was flagged as spam for some reason, so I just released your reply to Jaime. I have no doubts it will be informative! I know I owe you an email, it is coming… promise! Hugs, Char.

Hi Don,

Thanks so much for writing and glad you’ve found our forums! Isn’t the chaos of COVID-19 just unreal? It is breaking my heart with what it is doing to transplant programs (pausing them) although people are in desperate need. Just seems so unfair! I hope you remain safe as well, and your practice isn’t too busy at the moment. Thank you for…[Read more]

@joeyf36

Hi Joe,

This is a good question, although I don’t believe there are any drugs available test to test the effectiveness of ‘curing’ / stoping COVID-19.  I don’t believe, but I could be wrong. Likely PF patient’s can’t try it because of possible drug interactions with our anti-fibrotics, which Ross listed above (thank you @cimarronkid )…[Read more]

@jaimeluciano

Hello my friend, so nice to hear from you! Thanks for reaching out — many of our forum members have been on my mind amidst this COVID-19 pandemic. Thank you for this update, and I am SO thrilled you’ve found a combination that leads to better sleep for you! I know the issue with phlegm was a real struggle, so I am really happy…[Read more]

Hi Don,

Thanks for writing to us and welcome to the forums!

Zofran often helps me if I am struggling with nausea due to my Ofev. Oddly enough, so does imodium if I am struggling with GI side effects, but only the sublingual tablet (under the tongue) the oral tablet doesn’t do anything for me. Im really glad to hear you’re tolerating the 150mg…[Read more]

@dennisr13

Hi Dennis,

Thanks so much, that really means a lot to me! I am a bit overwhelmed with information right now – have you heard, a few transplant centres are not doing organ transplants right now with the COVID-19 pandemic? It’s crazy! Once I get my head a bit more “back in the game”, I will be sure to reach out. Hearing about the…[Read more]