I feel very fortunate that I will be celebrating my fourth lung anniversary in March. When I originally got the word that I had if I was a little negative because I felt that the end was too near. I decided to fight back staying healthy and exercising. On March 16. 2021 I was very lucky to have a single lung transplant. Yes, it is a…

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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… 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… 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… 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… 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… 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.… 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… 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… 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… 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… 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… 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… Read more