[Debbie Wuest]

My mother passed away with IPF as well, she must of had it for years and never knew it, she lived  3 months after being diagnosed, her doctor said she was in the last stages when they found it. I was diagnosed with IPF in February 2021. I have seasonal allergies and sometimes end up with bronchitis. I had a cough that lingered for awhile, so I went to the doctor, she ask me if I had lung issues in my family. I told her about my mom, she sent me to a pulmonologist. My pulmonologist said IPF was very hereditary. I past all the breathing and walking test, she order a CT scan based on family history and sure enough I’m in the beginning stages of IPF. I also went to Duke for a second opinion too. They said the same. The doctor at Duke said I was early into my diagnosis and I wouldn’t be eligible for any trial studies. I ask about the genetic testing for my kids, he made it sound like, it was a waste of money having the testing done, he said you can test positive and never get it, or test negative and still get it. My mom’s brother and one sister passed away with IPF. The older sister past away with lung cancer. We often wonder if she had IPF and didn’t know it. My mother’s older sister that had the lung cancer has 3 children who had IPF, two have passed away and one had a lung transplant 5yrs ago and seems to be doing well. The scary part about all of this is no cure and the unknown of whats to come next.