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… 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.

I don’t know if it is “safe” to discuss end of life here or not but I need to speak about it with other sufferers of PF and it’s been weighing heavily on my mind.  Is it okay?  I don’t want to start typing without permission.

GratefulDeb

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… 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

I have been symptomatic since 2008.  Yes!  You read that right.  I’ve recently received the dreaded PF diagnose and am on oxygen 24/7.  My lungs are severely scarred and fibrotic.  My other organs are now been effected by the PF.  My heart is enlarged, I have a mass on my liver and my kidneys are having issues.  A transplant surgeon wants to… Read more

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… Read more

Hello everyone.  I hope this finds you feeling well today and most importantly, happy.  I have PF and have been symptomatic since 2008.  Yes, 2008.  I’ve been seen by pulmonologists all over….Cleveland Clinic, Temple Lung Institute, Johns Hopkins and now UMiami Health.   I am scheduled for a biopsy next week.  Because my lungs are so… 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… 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