GratefulDeb

That’s great news!!!

I hear you!!! I have gained at least 55 lbs over the past 3 years.  It sucks, I know.  I try to get some exercise but I run out of breath quickly and I am on oxygen 24/7.  I attribute it to Prednisone….which I am now tapering off as I am about to start OFEV (nervous about that).  Prednisone really bloats me up and my appetite is huge on Pre…[Read more]

Thanks Doc. I do not have the “good” Medicare Part D plan.  I reached out to the drug manufacturer and am going through the process of trying to get their financial assistance and I do believe I qualify…..at least from the telephone call I had with them I am now hopeful.

Thanks everyone.  Been a long day for me and I’m not in a good headspace to write at the moment.  I will post something tomorrow as I really need to purge some thoughts.

Thank you to EVERYONE for your kind replies.

I am sorry you are going through this.  I would give Hospice a call just to see what their thoughts are on the subject.   I understand your fear in calling them but from your post it sounds to me like your Mom is already aware of the inevitable ….“she has been told that there was nothing that could be done, so since that time, she has refused fu…[Read more]

Oh no.  I live on an island and looking into starting Ofev.  I am always outside.  I hope Ofev doesn’t have the same side effect as the Esbriet.

That’s exactly my fear, Chris. I read somewhere that there is a slight risk of biopsy triggering exacerbation

WOW!  Thank you to all of you!  My pulmonologist is looking into B-I.  I truly appreciate he time each of you took to answer my question.

GratefulDeb

Oh God.  I could not have said it any better than Tonya Worley said.  All of it resonates with me.  Tonya, you took the words right out of my mouth.  Asking for something for pain has become something of shame.  I asked for something for my pain and was met with a big NO.  This disease IS painful.  Unless you have directly experienced it, you ca…[Read more]

I live in the U.S. Virgin Islands so I enjoy the beach, the rainforest and the beautiful people here.  I enjoy living on an island hilltop that overlooks the Caribbean Ocean.  I wish I could get our more but due to my PF and being on oxygen 24/7 limits my life.  I enjoy making people laugh.  I enjoy music and writing.  I enjoy being with my litt…[Read more]

I also chose not to “get on the list”.  I am not frightened of dying.  I am at peace with the idea and I am working towards making the rest of it the best I can.  I’ve lived with this since 2008 and it has progressed over the years.  I’ve lived a fantastic life and I am ready for more.

Namaste,
GratefulDeb