My paternal grandfather was the first (that we know of) to die with IPF. He had 12 children, and of the 7 who lived to adulthood, two died with IPF—one being my father. Of the three in my generation with IPF, one is deceased. Each of the two of us still fighting is the child of one of the generation two victims.

I’ve had physicians tell me…

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No matter how much time I have on my POC, I never leave home without a small bag that contains a fully charged spare battery, a power cord for recharging, and another power cord for the car. Things happen, and my backup bag has saved me more than once.

I too have had good success with acupuncture. It doesn’t cure, of course, but it reduces symptoms wonderfully. Before I found acupuncture, I had to use a rescue inhaler several times every day. Now I go days without needing it.

I might add that I was a complete sceptic before trying it.

I too use the Apple Watch to keep track of my oxygen saturation. I find it hard to use for spot checks (one has to stay still, more still than I can usually manage), but it does a great job with readings in the background. I can check the associated app and see how I’ve been doing for the past few hours—especially helpful to keep track of my… Read more

I know this is going to sound weird, but it has worked for me.

I have never believed in acupuncture, but when my spouse found relief from back pain through acupuncture, she pushed me until I gave it a try (mostly to stop her pushing me). To my amazement, it helped! It doesn’t get rid of the phlegm entirely, but it lessens the phlegm… Read more

We’re all different, but I understand that lower dosages still slows IPF’s progression—just not as much. It’s still worth it.

Also, some of us develop tolerance for the medication more slowly than others. If I were you, I’d still keep trying to reach full dosage, just slowly and cautiously.

Hand in there!

My experience has been similar. When I asked my pulmonologist about skipping the noon dosage, she said there would be no harm done with the occasional miss but that I shouldn’t make the two-pill regimen a regular thing.

The best comment above was the one that said that we are all different. Adjusting to Esbriet (or Ofev) was hard, but it sounds… Read more

I have been told there is “probably” a genetic link. My grandfather, father, paternal aunt, two paternal cousins, and I all have IPF, so my family believes it.

I bought a wedge pillow. It’s really helps me now—a lot—but it didn’t at first. Only way to know is to experiment every few months.