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Sep 10, 2017 Latest post:
Dec 5, 2018
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Here's how we arrived at the place where we are now.
In the fall of 2013 during an annual check-up, my doctor made the strange comment, “Your lungs crackle.” After some additional tests and x-rays, I was diagnosed with Idiopathic Pulmonary Fibrosis (idiopathic means they have no idea how or why I developed this disease). According to the Pulmonary Fibrosis Foundation pulmonary fibrosis (PF) means scarring in the lungs. For some reason the lungs begin to build up scar tissue in the walls of the air sacs, and eventually the scar tissue makes it hard for oxygen to get into to the blood. Low oxygen levels (and the stiff scar tissue itself) can cause crackling and create shortness of breath when walking and exercising.
My doctor said he thought I’d probably had IPF for a long time and would live with it for a long time. However, by 2016 I was described as in “rapid decline” in spite of taking medicine as part of a clinical trial and other special medications. I began oxygen therapy in March of that year and the decline continued. The only other treatment for IPF is lung transplant.
So as of July 2017, we are living in Durham, NC, home of Duke University. After weight loss, exhaustive medical tests, and 10 weeks of physical rehab, on September 8 I was listed for a lung transplant.
Ron and Lori have been a big help in the process. They have agreed to assist with this CaringBridge site to update for family and friends as I make my way through this process.