@dennis
-
Charlene Marshall started the topic Generic Version of Esbriet Available in the US. in the forum Esbriet (Pirfenidone) 1 day, 22 hours ago
The astronomical costs of the two FDA-approved antifibrotic medications is a popular topic of conversation among our forum community, and for good reason. Without adequate coverage, the cost of these drugs are prohibitive for some patients living with idiopathic pulmonary fibrosis (IPF) to access. Sadly, anti-fibrotic medications, including…[Read more]
-
Charlene Marshall replied to the topic Drinking Wine with Pulmonary Fibrosis. in the forum Young Adults Living with Pulmonary Fibrosis (40 & Under) 2 days, 13 hours ago
All really good points @chas2712 – definitely important to consider your personal medication regimen before decided whether or not you can safely consume alcohol. There’s so much for us to consider so its always important to discuss first with your treating physician. Thanks for taking the time to write and contribute to this conversation…[Read more]
-
Charlene Marshall replied to the topic How Do You Cope with the Funeral of a Fellow IPF Patient? in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 days, 13 hours ago
Thank you for sharing this experience @wendy-dirks, though I’m so sorry you had to navigate that as well, and sorry for your loss. I appreciate hearing from others’ who understand the deep self-compassion and grace that its taking to cope with this personal loss. I will add those books to my reading list – which tends to be really long these days…[Read more]
-
Charlene Marshall replied to the topic Life span in the forum Diagnosis Information and General Questions 2 days, 13 hours ago
I absolutely agree with you @ebeth! The 3-5 year prognosis was published and made public before the two FDA antifibrotic drugs were approved, so the data is very much outdated but unfortunately its still readily available on Google and many other sites. Hope you continue to do as well as possible with this disease, thanks for sharing a bit of your…[Read more]
-
Charlene Marshall replied to the topic Mental Health & Chronic Illness Advice in the forum Living with Pulmonary Fibrosis: 50+ 2 days, 13 hours ago
Hi @kathleen,
Thanks for sharing your mental health and chronic illness advice following my post. I agree with you; counselling would be a piece of advice I’d share with others and encourage them to give it a try as its so hard to navigate our feelings in the presence of our friends and family members sometimes. Sorry to hear sharing with your…[Read more]
-
Rob replied to the topic Starting Esbriet in the forum Esbriet (Pirfenidone) 4 days, 23 hours ago
Hi Jim
IPF sucks. I was diagnosed 5 years ago(at 55) and have been on Esbriet for 4 years. Very little lung decline🤞. Initially had some stomach upset and sun sensitivity lasted a bit longer but now manageable with sunscreen(mostly on hands) and a big hat when I golf. No idea if Esbriet has helped but will definitely will continue taking it.…[Read more]
-
Charlene Marshall started the topic Mental Health & Chronic Illness Advice in the forum Living with Pulmonary Fibrosis: 50+ 1 week, 1 day ago
Hi Everyone,
I was recently invited to be a guest on a podcast for another rare disease community. There were four guests total, representing various rare diseases and the topic we were discussing was mental health and chronic illness. This podcast topic was particularly focused on women for this week, but a lot of the advice can be applied…[Read more]
-
Charlene Marshall replied to the topic How Do You Cope with the Funeral of a Fellow IPF Patient? in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 week, 4 days ago
Thanks for your kind words and suggestions @christie-patient. Always lovely to hear from you and your perspective. I didn’t realize that is what was happening; grieving in the public eye of a small community but you’ve absolutely nailed it. I appreciate your thoughts and YOU, thanks for writing.
Char. -
Charlene Marshall replied to the topic How Do You Cope with the Funeral of a Fellow IPF Patient? in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 week, 4 days ago
Thanks for sharing your thoughts, Fred. I agree – so important to speak with the family members about the person who died as a person-first, not victim of this disease. It’s hard when we’re living with the same disease I find.
Take care,
Char. -
Charlene Marshall replied to the topic Acute Exacerbation and Pneumonia in the forum Living with Pulmonary Fibrosis: 50+ 1 week, 4 days ago
So sorry to hear this @wendy-dirks! I hope you’re doing a bit better since you wrote this? Thinking of you!
Char. -
Charlene Marshall replied to the topic Top 4 Words You'd Use to Describe IPF in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 week, 4 days ago
Hi @ellebleu
Sorry to hear of the frustrations and pain you’re navigating. It seems unlikely that a 5th pulmonologist will give you answers that 4 already haven’t, but you can always consider a second opinion. I know some people who are prescribed pain meds, but its not common based on my understanding for those of us with IPF/PF. Not sure if…[Read more]
-
Charlene Marshall started the topic How Do You Cope with the Funeral of a Fellow IPF Patient? in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 weeks, 1 day ago
Hi Forum Family,
This week has been a tough one for me, and I’m wondering: have you ever experienced survivor’s guilt when a fellow patient with IPF dies before you but was diagnosed after you?
I’m in the midst of publishing a column about this, but a friend of mine lost her Mom last week to IPF and the funeral was this past weekend. Her M…[Read more] -
Charlene Marshall replied to the topic SusilaBai – RIP ♥️ in the forum In Loving Memory 3 weeks, 1 day ago
Dear Rajesh,
I am so sorry to hear about the loss of your mother, and am sending you lots of love to surround you. May the memories you have together carry you through this difficult time, and know that our forum community is here for you. I’m glad this site was helpful, and I am hoping your mother is resting now and breathing freely.
Kindest…[Read more]
-
Charlene Marshall started the topic Embracing Your Diagnosis Date in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 weeks, 4 days ago
Last week I wrote a column following the 6-year anniversary date of being diagnosed with idiopathic pulmonary fibrosis (IPF). In some respects, that day (April 7th, 2016) feels like it was just yesterday and in others, it feels like a lifetime ago!
While the 3-to-5 year prognosis for those living with IPF is outdated, it’s sometimes ha…[Read more]
-
Charlene Marshall replied to the topic Top 4 Words You'd Use to Describe IPF in the forum Join the Discussion: Welcome to all PF/IPF Patients 4 weeks ago
Thanks for sharing your thoughts with us William! That is an easy visual for others to understand how difficult this disease is for us.
Char.
-
Charlene Marshall replied to the topic Top 4 Words You'd Use to Describe IPF in the forum Join the Discussion: Welcome to all PF/IPF Patients 4 weeks ago
Thanks for sharing your 4 words with us, Gordon! I too am hopeful (for a cure). Take care, Char.
-
Charlene Marshall replied to the topic Top 4 Words You'd Use to Describe IPF in the forum Join the Discussion: Welcome to all PF/IPF Patients 4 weeks ago
Hi Elle,
Thanks for sharing your thoughts with us and contributing to this thread. I’m so sorry to hear of your experience with GERD too, how awful. Unfortunately, this is a common thing a lot of people with IPF deal with, and there have been some good forum discussions about it. If you look on the right hand side of the screen you’ll…[Read more]
-
Rob replied to the topic Supplements in the forum Living with Pulmonary Fibrosis: 50+ 4 weeks ago
Has anyone had experience taking quercitin? Supposed to help immune support, respiratory health and now many people have started taking it that have covid.
Stay well.
Rob -
Charlene Marshall replied to the topic Top 4 Words You'd Use to Describe IPF in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 month ago
Thanks for sharing your top 4 words with us, Paul!
-
Charlene Marshall replied to the topic Top 4 Words You'd Use to Describe IPF in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 month ago
Certainly agree with your choice of words Denise. Thank you for taking the time to share with us. Know we’re here for you!
Char. - Load More