idiopathic pulmonary fibrosis

When you tell someone that you have idiopathic pulmonary fibrosis (IPF), chances are they ask, “What’s that?” Because while IPF greatly impacts you and your lifestyle, the disease only affects about 100,000 people total in the United States.

And explaining the disease and its symptoms isn’t exactly easy either. That’s why we reached out to IPF patients to get a sense of what they’re going through and how they’re managing it all today. Read their inspiring stories here.

I am very fortunate because I don’t have any difficulty breathing or episodes of coughing. I do have limited endurance, frequently feel very tired, and have flu-like symptoms most of the time. I am not able to work as many hours as I use to, therefore my income is less. I don’t have the energy to do things that I use to enjoy. However, I am grateful that my breathing has not been affected at this time.
– Debbie, living with IPF
It is easy to get lost in the difficulties and fear as the disease progresses. I am at a stage where I have had to change my lifestyle because of IPF, and I am not happy about it. I am not sure how it connects, but I am also at this time more critical of my medical persons. All in all, I am really a cranky old thing at the moment, but I try to stay positive.
– Barbara, living with IPF
It gets tougher as it progresses. I try to take one day at a time and thank God for each day he gives me. Thankfully, I found a wonderful doctor after trying several that didn’t seem to care.
– Velta, living with IPF
Being diagnosed with IPF is like living in a dark room for me, not knowing what could happen next or how long I would be around. Gaining knowledge about the symptoms and progression of IPF creates the light for me to go on. IPF can stay stable for a long period of time, then all of a sudden rapidly progress for no reason. The anxiety of not knowing the future is a very scary thing. Some days breathing is easier than others, while walking uphill or upstairs can put my oxygen too low and cause damage to my other organs. Having emotional support and encouragement helps me not to focus on the disease but on living my life to the fullest, and enjoying each day as much as I can.
– Glenda, living with IPF
Living with IPF is difficult. There are treatments now that slow the progress of the disease, but slowing is not resolving. The most you can hope for at each doctor’s visit is to find that you are stable. … Life with IPF includes the need to use supplemental oxygen, monitoring blood oxygen saturation, and accepting the fact that you are going to get lots of looks and questions when out in public. A simple trip to the grocery store requires planning and preparation to make sure you have enough oxygen on hand to make it back home. And traveling? A trip to visit out-of-state family requires coordination between your medical team, oxygen supplier, insurance company, and the airline.
– John, living with IPF
Living with IPF changes from day to day. I’m working at keeping strong, which is difficult when you get gassed in a minute and need to slow down or stop and get the O2 back up. My cough isn’t too bad, but when I’m in a group of people, I’m the only one coughing. Keeping a positive attitude since getting down doesn’t help anything. Just hoping I last long enough until they find more effective treatments besides a lung transplant.
– Wayne, living with IPF
Living with IPF is a challenge. As a terminal illness with no cure, our options are very limited to FDA-approved clinical trials, two drugs, or transplant. It becomes a full-time job to stay healthy enough for these options. Because of the nature of the disease, it’s isolating and lonely to make sure we don’t catch a cold or other illness that can cause a decline.
– Laura, living with IPF