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.

Thank you!

Hi friends,
Do any of you have suggestions regarding a rolling cart that could accommodate a portable oxygen concentrator? I know there are heavy-duty dollies for oxygen tanks.
Currently, my mom has an 8-lb POC that she can carry in a shoulder bag, but she’s lost so much weight we’re trying to find ways that she could use the oxygen more and… Read more

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… Read more

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.

 

Hi,

Does anyone have experience with midsection pain that was made worse by taking Esbriet?

My mom started taking Esbriet several weeks ago. She has long complained of pain and discomfort in her chest and all around her torso (seems vague, I know) that has gotten worse as her IPF has progressed. She’s currently only able to tolerate 2 pills… Read more

Thank you both.

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… Read more

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… Read more

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… Read more

Hi, all. I am not sure if it is appropriate to introduce myself here, but I’ve been browsing your forums for a while and found lots of information that is helpful. Some I have passed on to my mother, who is the patient. I’m joining because I’m the one interested in online interaction, at least at this point.

We are not at this stage yet and… Read more