[Stephen M. Winsett]

I have two POCs, one is 8lbs and one is 5lbs.  When I travel, especially long flights, then I use the heavier one as I have 3 batteries for that one. It is a Caire and provides pulse up to five lpm.  I am on oxygen 24/7 but never had a problem with the pulse condensers.    My home unit is continuous though.

[Stephen M. Winsett]

I took Ofev 150 xtid for 3 months and had so many gastric problems and pain; I went off it for a week and got much better; so then back on for 3 more months, same problems except now I have developed a fistula between my bladder and colon in November 2022.  Up to then I had lost 40 lbs (which I needed to lose) and food was down to soup and oatmeal.  They took me off Ofev immediately and since I have IPF they are tryihg to figure out a way to treat my fistula without major surgery.  My pulmonologist was of no help through any of this and actually seemed surprised by my condition (hasn’t he ever read the warnings on the Ofev publications?).  He wants to try Esbrite, the other pill, but I am not so sure I am willing to try another gut wrenching med.  I would rather enjoy my life, diet, and not suffer through the agony that I went through before trying to extend my life span.

[Stephen M. Winsett]

Hi there, I am a retired Episcopal Priest age 83, and about a year ago I was diagnosed with IPF and put on Ofev.  After four months on Ofev, it had succeeded in giving me a fistula that has become so problematic to cure because of the IPF and no one wants to do real surgery on me.  Anyhow I have read most of the comments on this subject and agree with most of them.  I have had a lot of experience with the end of life during my 49 years as a priest and giving the last rites to many people.  I had my own struggle with realizing that I would not, in all likelyhood, reach the age of my father and grandfather and got my affairs in order for the end.  Most churches and faiths have planning ahead programs of some sort, and I have made mine.  I am not going to try anymore medicines as they seem, for me, to cause more harm than healing.  I have lived, unlike some with this baffling disease, a long and full life. And in the course of doing that have learned that death is not the enemy to fear, but worry is.  Living one day at a time, enjoying each day with the joys it brings, even if it is just sunshine or a football game, brings me peace.  I have read enough about IPF to know there is no common way it ends, each one seems unique and it all ends the same. I have learned much from the folks whose bedside I graced while they prepared and departed this life, and most have been inspiring and calm. So don’t worry about the end, enjoy each moment you have left. This is a great gift that not everyone gets.  An old church litany prays “from battle and murder and sudden death, good Lord deliver us.”  IPF is not sudden, it gives us the benefit of time.  God bless you today.