Hi Luann,

Hang in there and do not despair. 2 years seems way too short. I was diagnosed with ILD in 2015 and was prescribed prednisone initially as I had pneumonia to help with the inflammation. I was told at time 3-5 years. My issue also included an over active immune system and was then diagnosed with dermamyostitis. I still take 2mg…

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Frank, Oxygen levels that low is dangerous if sustained for very long. It puts a strain on your heart and deprives your brain of much needed oxygen to think clearly in that moment. I carried a portable tank whenever I left the house for any task as the activity of walking had my numbers go lower than 90, which is your target number to stay… Read more

Hi Keith,

Thanks for your story. It blew me away to hear that you contracted this disease from scuba diving. Never knew this could happen.

I’m over 50 in California and was diagnosised with ILD complicated with autoimmune in September 2015. The first diagnosis was IPF but my pulmonologist was hesitent to prescribe any drugs to help due to… Read more

Hi all, I’ve tried pineapple to help with coughing too. I don’t have gerd nor do I suffer from acid reflex, but the acidity in this wonderful fruit does do a number on the inside of my mouth, so I do it in small doses. I found a great supplement through my nutritionist that has bromelain (pineapple extract) as its main ingredient. It also… Read more

Hi all,

Karl, thanks for your imput. I totally agree with you.  I completed pulmonary rehab soon after my diagnosis and most of what we learned included diet and exercise. It’s a lifestyle that can be obtained if we can realize how making even small attempts at exercise increases quality of life. And the equipment you want to use Charlene,… Read more

Hi @jeanmichelf, and Charlene,
Thank you for bringing up this topic as those of us with this disease need to find lots of different ways we can still participate in sports with IPF.

I was diagnosed with IPF in Sept 2015 and started using O2 in 2016. Prior to that I had been an avid golfer and grieved at the thought I could no longer play… Read more

Hi Charlene,

When I read this, I started tearing up because I can really relate to this experience. It’s one of the downfalls of having a disability that isn’t evident though many of us use supplemental O2.

Going to the grocery store some days takes a lot of effort. It’s an activity that I sometimes look forward to because it gets me out of… Read more

A good friend said recently, “you’ve really taken the bull by the horns while you manage this disease”.  So, I guess I’d also use the word fight. By engaging myself in this way, I feel more in control and have some sense of power over the limitations associated with PF.

Hopeful, Patsy

Hi, the chills and struggles to get out of bed that Julie’s dad is experiencing, are the early, icky symptoms I experienced too. I was diagnosed in 2015 after many months of the doctors taking test after test trying to identify my illness. They kept treating me for pneumonia that, thankfully, never put me in the hospital. While I had an… Read more

I was diagnosed in September of 2015 and am on supplemental oxygen. The progression of my fibrosis has slowed. Although anxious about it, and with the help of this forum, have recently taken my first airplane trip to Mexico. I would like some topics to be how nutrition helps and hurts; adjusting medication and activities when feeling… Read more

Hi Kathie,
Your husband is so lucky to have tou in his life sharing this journey. Cuz it is a journey. When I was diagnosed I lived alone. Don’t get me wrong, I wasn’t actually alone. I had a great support system of friends but most were still working and others lived about 4 hours away. Initially, I was so sick that simple things were hard if… Read more