[Jacqui]

Wow, these are all great ideas. I really appreciate each of you taking the time to share what’s worked for you.

If I present enough suggestions to my mom, I am optimistic she can find something she likes.

My very best to you all.

[Jacqui]

Thank you!

[Jacqui]

Thank you both.

[Jacqui]

Hello, Allan,

I see I am the first one to reply. I am not a patient, but my mom, who has IPF, is about to embark on an overseas trip. She and my dad live in the U.S. and they are coming next week to visit us in England.

At the moment, her oxygen use sounds similar to yours, if not more often (she does not use it 24/7). I know they’ve had to organize extra batteries and rent a portable oxygen concentrator so she can use it on board the long flight as needed (for some reason they won’t rent her only the batteries, so she can’t bring her usual POC). She has not needed to use it on a shorter flight previously.

This is all new to us, but I’ll be happy to report back on her experience! Obviously, as you know, the extent of activities she’ll be able to do depend on how tired she is in general and specifically from the long trip. But like you, my mom and dad really want to do this now. She feels “okay” now, and they have had to postpone this trip since 2020 because of the pandemic.

Good for you for planning this trip with your wife. A European river cruise sounds wonderful.

[Jacqui]

Thanks, Ellen, and I’m sorry you had such a hard time with Ofev.
My mom has also had a lot of trouble with weight loss/not being able to regain weight. That is how she first knew she had a problem in the fall of 2019. We did not get a definitive diagnosis until earlier this year, although both IPF and hypersensitivity pneumonitis were suggested within the first year. Lots of tests, plus COVID came in and messed up the entire world.

I get the impression that PF involves a lot of slowly learning one thing after another. My best to everyone who is dealing with such difficult conditions.

[Jacqui]

Thank you all. I guess it’s comforting to know that we’re not going through this experience alone, but I’m sorry for the side effects you are experiencing.

 

[Jacqui]

Thanks, Christie! Sorry I just saw your reply now.
I am blessed to have a flexible work situation and the means that I can travel to see my parents and help them when the need arises. At the moment, because my mom feels “okay,” they are getting ready to come visit us! Which is a long trip for them, but they’ve had to defer it since 2020 (because of the pandemic, not PF) and no one thinks it’s a good idea to defer it any longer.

[Jacqui]

Hi, Christie, and thank you for the welcome. I’ll try looking at the drop-down list (I remember quite a few phrases from the post, frustratingly). Now I know to bookmark discussions that I want to go back to!

The hard part with my mom is that I live in another country, so most of what I can do is communicate and support from afar. I’m sure many people here know that the amount of information can be overwhelming, especially with the “brain fog” that often seems to accompany this condition. My parents are doing great, but all us “kids” (40s) live far away so we worry about the many issues that can also accompany aging.

Thanks again,
Jacqui