The story of Colleen
My name is Colleen and I’m 53 and reside in Michigan. In early 2016, I was having difficulty breathing and new I had to get in for a physical, but it was my daughters graduation from high school and we had a lot going on. In June of 2016, the day of her graduation party, it was sunny and 95 degrees hot and humid. I was having a real tough time breathing and just before her party was to begin a few people said I had to go to emergency because they were concerned I was having a heart attack or stroke. Hoping to return…should have known better, I ended up being there until the afternoon of the next day. They ruled out the heart attack and stroke and I even had a stress test to rule it out. The emergency room doctor told me that my xrays showed shadowing on my lungs that could be IPF. He told me about it, but I had never heard of it and at the time didn’t take it seriously. I ended up going to a pulmonologist at UofM and he ran all tests to rule out autoimmune diseases and when a definitive diagnosis still couldn’t be made, I had an open lung biopsy in September, 2016 which confirmed I have IPF. Prior to the biopsy I had googled and read up on the disease and was amazed that I have never heard of it, but considering only 135,000 people in the US have this disease and thousands die each year of it, I was then humbled and scared. I am a single parent and worried about my daughter and what this will do to her. I did what most of us do and went into a depression for awhile and then finally came out of my fog, as I like to call it, and knew I couldn’t let this disease rule my world. This disease reminds me daily that it’s there by my inability to walk long distances without being short of breath or the coughing attacks. I am currently on one of the two approved medications for IPF, Ofev and I’m hoping it will slow the progression of the disease down so I can have a longer and better quality of life with my daughter. The only other option I have is a double lung transplant, which right now has not been a topic of thorough discussion with my doctor. Right now we are working on slowing it down, but it may be an option down the road. Currently, I am not on oxygen, but know it will happen sometime, hopefully sooner than later! This disease stinks and we IPF Warriors, as we call ourselves, do everything we can to bring awareness to this disease and hope and pray for a cure. We have already lost a few of our Warriors this year which saddens me that these good people are leaving us way too soon! I hope and pray they find cures for all these rare diseases and that none of us have to go through this! Peace, Love, Prayers and Happiness to all!