Hello! My name is Beth Hunley and I am 56 years old. I live in Portland, Indiana. I was diagnosed with idiopathic pulmonary fibrosis (IPF) by a lung biopsy in April of 2014. I am currently on the lung transplant list as of March 2017.
My first symptoms of PF were shortness of breath, chest pain and feeling that I could not adequately fill my lungs up with oxygen. I had had these symptoms on and off for years but nothing ever showed up. Then I got really sick in January of 2014 and was diagnosed after that.
I found out about the patientMpower app from PF Warrior, Bill Vick on Facebook. When I found out that we were eligible to participate in the patientMpower and to keep the spirometer I was very excited. I found this very intriguing because I always try to treat my disease proactively and this is a piece to the ever perplexing pulmonary fibrosis puzzle.
Using this app means that I can keep up to date with my forced vital capacity (FVC) instead of waiting the customary 3 months between doctor visits and my pulmonary function tests (PFTs). I was also recently ill and noticed a decline in my FVC numbers and contacted my Dr. This was additional proof that I was having issues instead of second guessing myself.
My favorite application to use would be the spirometer. It gives me back some control with my disease. I am always curious as to what my numbers will be each day.
I like the reminders on the app to take my medication. This is stressed in many of my lung transplant support group meetings that you have to take your medicine on a strict schedule! I know when I hear that reminder sound that it’s time to take my meds. I am so used to it now, that I know post transplant I will be ready for that strict medication schedule.
patientMPower has been quite the ambassador to all of us suffering from idiopathic pulmonary fibrosis (IPF). From offering the spirometer, to live education videos on Facebook. I appreciate all they have done.
I have always tried to be my best advocate in my healthcare. Being able to bring data into a large database that will potentially help others is awesome. I am always trying to give as much as I receive!
