The story of Julie
My husband, Ross, was diagnosed with IPF (Idiopathic Pulmonary Fibrosis) during the summer of 2010. We had never heard of the disease and discovered it is considered rare. IPF is a progressive scarring of the lungs, which thickens the lung tissues causing an irreversible loss of the ability to transport oxygen. Idiopathic simply means the cause is unknown. There is no cure, with medications and treatments aimed at only relieving the symptoms. Some patients are diagnosed and live for years with very little change of lung function; however, the prognosis for IPF is 2 to 5 years which means that most are not as lucky. The only thing that can be done for a person diagnosed with IPF is a lung transplant, if the patient qualifies for a program.
I began a journal in June 2011 while sitting in a waiting room at one of our many doctor appointments. I wanted to keep track of what had become a whirlwind of tests and doctor visits. I created a blog consisting of information about IPF and my journal. Please read the story @ www.ju-journey.com
I wanted to share our story. The story of an ordinary man who was my husband, father of three and grandfather of six when, at the age of 60, passed away January 16, 2012. My hope is that people will understand how fragile life is and what can be achieved as a organ donor. The life that is saved by an organ donor could be that of someone YOU love.
Meet others who understand on the international IPFcommunity on RareConnect.org:
https://www.rareconnect.org/en/community/idiopathic-pulmonary-fibrosis