Charlene Marshall replied to the topic Transplant candidacy and pre-existing CAD in the forum Pre/Post Lung Transplant 3 years ago
This is a really good discussion topic to start Patricia, thank you for bringing it up! I am still on the pre-transplant side of things, so I don’t have too much to offer about the final listing process. I’ll tag a few folks below who I know have had a transplant, and let’s see if they have any suggestions to share with you.…[Read more]
Sheila O'Brien replied to the topic Possibly allergic to Esbriet in the forum Esbriet (Pirfenidone) 3 years, 7 months ago
( @justme0956 )
Read your comments with interest as I have just experienced a reaction to Esbriet. Have only been on it since Jan this year and up to now no problems. Rash appeared on neck, arms, face and upper chest. Have always applied sunblock as directed so don’t know where this came from. Doctor gave me some cream and tablets to…[Read more]
Charlene Marshall replied to the topic Lung Transplant Considerations. in the forum Pre/Post Lung Transplant 3 years, 12 months ago
Wow, thank you so much for sharing this, I actually had no idea it existed! @justme0956 (Paula), did you see this? So glad Mass General has such great outcomes/results and that you’re in good hands my friend. You are so kind in sharing the results of your research Peggy, thank you! Please keep us posted on how your husband makes out and…[Read more]
Charlene Marshall replied to the topic Lung Transplant Considerations. in the forum Pre/Post Lung Transplant 4 years ago
I wish I could join you both for coffee @cynthia-comery-ferguson and @justme0956 (Paula)! Enjoy catching up and know that my heart is with you while you’re together. It’s so nice to be able to connect with people going through the same experience. Let me know how it goes, and enjoy your coffee meet up 🙂
Charlene Marshall replied to the topic Dying from IPF in the forum Join the Discussion: Welcome to all PF/IPF Patients 4 years, 2 months ago
Thanks so much for writing to us, and for your kind words to each of us involved in this topic thread. A very tough topic to discuss, but really important so I am glad you shared a bit more about your story here. I also am very thankful for Megan and her willingness to share her Dad’s story with us!
Kudos to you for your ability to…[Read more]
Charlene Marshall posted a new activity comment 4 years, 4 months ago
Hi @ed-caraher, oh I am so sorry to hear of this experience that you’re having with Ofev after being on it for so long. That is terrible, and must make the day-to-day living so tough …
The only “good” news I have to share is that you’re not alone. I know several folks on this forum who ended up not being able to take Ofev due to suddenly…[Read more]
Charlene Marshall posted a new activity comment 4 years, 9 months ago
Hi @justme0956, great to hear from you, thanks for tagging me in this post. As long as I am tagged, I receive notification that you’ve provided an update for us. Just as an FYI (if interested), you start a new topic by clicking on which forum you’d like to post in, based on the ones that are currently active on our site:…[Read more]
Thanks very much for your quick and informative reply, Charlene. I will ask the doctor about reducing the dosage or quitting the drug altogether today if he is available. As well, keep watching this forum for any updates.
You are very gracious.
Hi @ed-caraher, I really hope the conversation with the Dr. goes well. There is something to be said I think with a large number of people on this forum unable to tolerate the higher doses of Ofev but still being okay on the 100mg. I hope that is an option for you, or stopping it for a short window of time to let your system (and you) catch a…[Read more]