Great news, George! I wounder if it’s not too much to hope for that treatments will emerge that can, in time, arrest the fibrosis. I mean, that Ofev seems to be really extending time.

Hello Katie, thank you for sharing your experience. I can imagine that with side effects like that, taking medications may well not always be worth it. It is not just life span but health span. I hope that the adjustments you are making and what Don has shared help you. And yes, it is possible that she has tried medications just did not share… Read more

Charlene, if I may, I’d like to share something around stress that you mention, if it is helpful. In my view, the nuts n bolts of stress management are mostly well known: moderate work load; sense of purpose; at least a few satisfying relationships; journaling worries, stresses, and solutions; meditation; yoga; weight lifting and cardio;… Read more

Karen, it makes so much sense to ask her about her feelings and reasons for not taking them. Normally I am very good at taking all day long to explore people’s choices with them. When it’s your mother…..not so easy. I guess we are both struggling. Thanks for the reminder.

Hi Don, thank you for describing your experience. I am sure with your training and experience you have a great deal to draw from in dealing with IPF. With hope to hang in there using current medications until even more promising trials are finished, do you feel it is possible that IPF may never in the end shorten your lifespan?  Lots of value… Read more

Hello Mark, thank you for the note. By the way, if I say anything insensitive let me apologize in advance. I don’t have a serious disease. I just care deeply about someone I love. Feel free to correct me if I say anything dumb 🙂

Hi Peter, than you for explaining your experience. It seems that you and your pulmonolgist decided that there was a reason to wait. I guess with no symptoms, it was just easier that way. I am not sure of the pulmonoligists original view though. Why not start on meds the day of diagnosis? I mean, even preventatively? It certainly has been… Read more

Thank you for the reply, Karen. Those other meds you tried may have helped. Best of luck.

Hello Karen, thank you for your kind words. If this is denial, I am at a total loss for how to deal with it. These two new medications seem to really make a difference, and I can’t understand why anyone wouldn’t want to try them at least, and barring a massively difficult side effect, take them. The person I am talking about is my mother, and… Read more

Hello all,

I have a close family member with diagnosed IPF who is refusing to try any medications. I am not sure of the reason. Respecting boundaries, of course it is her choice. However, as a family member, it is not so simple to leave it at that. There must be a way I can help.

Can someone help me to understand why someone would refuse to… Read more

Hi Charlene,

Thanks for your response!

To be clear, this post was not about my relative, but about my immediate family, so this was about prevention. My relative does not have cats. But those in my immediate family worry about risks of getting IPF in future. So, would owning cats predispose one to getting the illness later in life?

That’s… Read more

Hello All,

I am not diagnosed, but a relative is.

Doctors recommend against exposure to birds such as parrots because the dust from their feathers can put one at risk of getting IPF. But what about pillows and quilts with feathers? Is there a risk from these? Should we throw away these things and get new ones?

Are there any pillows on… Read more

Hello,

Very happy to have the opportunity to post on this forum.

A close relative of mine who does not live with me was diagnosed with pulmonary fibrosis last year and my grandmother passed away from it as well.

Looking at ways to reduce risks to those of us not yet diagnosed. The doctors recommend against exposure to bird dander, but… Read more