-
Pat replied to the topic When You Don't Want to Talk About PF Appointments in the forum Join the Discussion: Welcome to all PF/IPF Patients 9 months, 3 weeks ago
oh my goodness! this is me. A friend of 50 years, a nurse to boot, said when i told her my diagnosis ‘i’ll always love you and will never forget you’ and i’ve never heard from her since! I’ve lost track of the number of people who have said ‘hope you’re better soon’. Maybe the worst though was a friend who asked me ‘how long have you got left?’. O…[Read more]
-
Pat replied to the topic When You Don't Want to Talk About PF Appointments in the forum Join the Discussion: Welcome to all PF/IPF Patients 9 months, 3 weeks ago
yes, ‘get well soon’ even after i’ve told people that won’t happen is really platitudinous
-
Pat replied to the topic Transplant Age Requirement in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 1 month ago
only true in usa unfortunately
-
Pat replied to the topic Pulmonary Fibrosis Secondary to Sarcoidosis in the forum Young Adults Living with Pulmonary Fibrosis (40 & Under) 1 year, 1 month ago
yes antifibrotics can be used if the sarcoidosis pulmonary fibrosis is deemed to be progressive. I was recently diagnosed with sarcoidosis fibrosis having been told for years it was asthma. I wish i had pushed for more testing earlier because pulmonary sarcoidosis can be put in remission with treatment, but once it progresses to fibrosis it can’t.
-
Pat replied to the topic Deep-breathing exercises in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 3 months ago
‘international breathe easy ‘ facebook group are running harmonica classas online
-
Pat replied to the topic Possible Cause of IPF – Ammonia ingestion and Statin?? Progressive? in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 3 months ago
There are over 200 forms of ILD, IPF is the most progressive, but there are a number of auto immune /auto inflammatory diseases which cause PF too. I have Sarcoidosis Fibrosis, its the second most common form of PF. We have to try to reduce inflammation to slow progress. RA, asbestosis , birds, acid reflux, lots of other cause of PF. Its p…[Read more]
-
Pat replied to the topic When will first treatment to repair scar tissue become available to humans in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 6 months ago
As a librarian i was keen to inform myself about research when i was first diagnosed. I have a list of various studies that started into fibrosis, i was hopeful, but over time i’ve become aware that very few progress beyond first studies. The world collaborative working on Covid showed what is possible when global efforts are put into research, s…[Read more]
-
Pat replied to the topic Inhaler use in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 7 months ago
It can help if you have other associated issues eg emphysema
-
Pat posted a new activity comment 1 year, 8 months ago
thank you 🙂
-
Pat became a registered member 1 year, 8 months ago
Welcome to the forums Pat, thanks for joining us!
thank you 🙂