[Bev Kunkel]

Hi Charlene, Because of the book (purchased last month because of an article from this website) by Noah’s Pulmonary Wellness I have already returned to doing many things that I had discontinued.  The singing as part of my worship I have renewed my emphasis without fear that I am harming myself and the link you offered validated my efforts but also encouraged me to do more.  My diagnosis is recent and only after searching on line have I received the vital information necessary for me to not let this disease define me.  I was actually diagnosed in June/July 2017 but only since I have demanded to see a pulmonary care physician that I actually have an appointment on May 17th (almost a year from original diagnosis). I was told right up front that I would probably only live 3 years.  Currently, I know & think that is bull. I feel pretty darn good for a gal with a death sentence and have plenty of energy.  The posts I have read from folks breaks my heart; scares me to death but also gives me hope from some pretty courageous individuals; pioneers in rare disease survival !!!  Previously, I was on tons of medications treating symptoms only and they almost did me in. I fired my doctor and then discontinued around 9 medications beginning December 2016 and started to come back to life.  I was up off the sofa no longer fighting fatigue but rather as of last summer gardening, digging in the dirt, planting, mowing, climbing on the house, painting, scraping; I think you get the gist.  I take lots of vitamins & enzymes; try to eat the foods that contribute to my well being.  I get plenty of sunshine and moderate exercise. I could be pretty mad and indignant about all the missed opportunities from wrong diagnosis but that would not help me or anyone else.  I have not really known what to write about or even if I fit in but I am thinking I will be close to my PF community for some time to come. So it is with warm personal regard that I respond to you, Bev K 🙂 🙂 🙂

[Bev Kunkel]

Thanks for the links to the article.  Singing is an important part of my worship and because I could no longer sing and read out loud I was moved to make the doctor appointment that resulted in my doctor ordering many tests which led to my diagnosis of IPF.  And, because of this website along with others I became aware GERD was one of the risk factor for the disease.  (My doctors obviously were unaware themselves) And just like everything else because it was uncomfortable to sing or read out loud I stopped doing it which obviously was the wrong thing to do.  I learn something new all the time about this disease and I thank you for contributing to that knowledge.  Thanks.