Mike Mses

Alan — I tried to have the VA cover my pulmonary fibrosis two years ago.  I even filed an appeal and included pictures.  Still denied.  I am checking now because of the PACT Act.  It covers this but only for Middle East Veterans.  My Legion contact is filing a supplemental claim to my original claim.  Next step will be to call the White House…[Read more]

Christie, Charlene

I had a single lung transplant on March 16th 2021.  I had asked my Team in January if I should get the COVID shots and they said yes.  Accordingly, I got my shots at the VA Lexington on January 16th and February 6th.  Lately I have heard that the shots may not have been effective because I was on Ofev during this time.  My tea…[Read more]

I was diagnosed in June 0f 2018 and told 3-5 years.  I probably had this in 2014 or maybe earlier.  Didn’t know until I went under for another procedure.  I was initially on oxygen when sleeping, but upgraded to 24/7 in 2019.  I am currently on 5 lpn pulse when out and 4 lpm when exercising.  I was put on the transplant list in January 2021 as m…[Read more]

Morning Everyone

My PF has progressed some where I am now on oxygen 24/7 at 4 liters.  Did some additional testing at University of Louisville in December and it was decided that it is time to be put on the List.  They estimate somewhere around 2-4 months for the transplant, then I will be recovering for anywhere between 3 months, maybe up to a y…[Read more]

Hi Cindy, all

I’ve been taking Ofev off and on for the past two years.  (Probably has PF for at least 5 years before that.)  Insurance mandated I switch to Esbriet, but after 6 months they let me switch back to Ofev because of the side effects.  Loose movements and some nausea is common, but some Imodium helps.  My taste has changed dra…[Read more]

Kathleen

I’ve probably had PF since around 2015-2016 and it was not diagnosed correctly.  In June 2018 I broke my back twice (bad bones I found out).  Doing that time I had very severe pain for months and my O2 fell to 66 the first time they tried to fix my back.  I believe that I probably had some exacerbation then because my breathing, etc. go…[Read more]

William

Initially there were many things that upset my stomach.  For the past 10 months or more I have had on most days cereal with skim milk and bananas with no side affects.  I take the Ofev after the cereal and then have a piece of toast or a donut afterward.  Taking Ofev in the middle of a meal is important.  Has to be a full meal for me.…[Read more]

Hi John.  My sleep schedule varies, but I usually have breakfast around 6 or 7 am, sometimes as late as 8 am.  My usual breakfast has become a bowl of Cheerios with a cut-up banana and milk.  Sometime I will have a piece of toast or a small donut afterward.  I take my Ofev about 2/3 through my meals.  Dinner is usually between 10-12 hours late…[Read more]

Mel

I was diagnosed in July 2018 when I had IV sedation and my O2 level fell to 66.  Looking back over health records, I was short of breath in 2015, but it was pushed off to being out of shape.  I’ll be 71 this coming June.  I am on Ofev, but only the 100 mg for now as the 150 mg was causing too many side affects.  I was on Esperit from Dec…[Read more]

I went to Washington DC last Friday to see the kids and then to be with other American Legion members downtown to visit our representatives and talk about Veteran issues.  I was already uneasy about the crowds and the virus, and washing my hands every few minutes or so.  On Monday morning the President was talking about suspending all u…[Read more]

Zee

I was diagnosed in June 2018 when they tried to repair three fractured vertebrae under IV sedation.  O2 level fell to 66 and I was told to see a pulmonologist.  By CAT Scan and PFT there was no problem diagnosing me with IPF.  I am still on O2 only when sleeping, moving around a lot (like shopping), and when exercising.  I am holding my own…[Read more]

Charlene — I was on Ofev for 5 months and my insurance refused to pay for it over Esbriet.  Upon switching over, my diarrhea got worse, the nausea increased, and I wasn’t sleeping.  After maybe 3 months, my insurance agreed to switch back to Ofev.  The symptoms got better, but did not go away.  My doctor suggested that I take a 2-week break fro…[Read more]