[Deborah Klein]

Hi Amy,  Everyone feels very confused and scared at diagnosis. It’s for sure something to be concerned about and your Dr. did you a favor as he doesn’t sound very educated about PF. I’m glad you got in so quickly to see a Pulmonologist!  Ask up front how familiar he is with PF (not all pulmonologists are)  and ask him to refer you to a Care Center of Excellence. There are at least two in the Houston area.

Go to  the Pulmonary Fibrosis Foundation website at pulmonary fibrosis.org and there is all kinds of good information. On there you should be able to download a sheet that has wuslestions to ask your Pulmonologist. Also on their webpage you may find a support group in your area. That’s a good place to get education and/or firsthand knowledge from patients just like you who are also on this journey.

I wish you the best!

[Deborah Klein]

Hi Patti,
First of all – liquid oxygen is not available to all patients because it is expensive and reimbursement not as good as gas and/or concentrator. The portable liquid machines can go was high as 15 L/min – albeit it doesn’t last very long. On the flip side there is a smaller liquid unit than the one in your home and even though it’s heavy, it is still doable. Because of the expense of the liquid my husband also had a home concentrator that I believe was approved by Medicare but that was a few years ago so that may have changed.

As far as POCs (Portable Oxygen Concentrators) go, these machines are VERY misleading! The numbers on the POCs are ONLY settings and NOT L/Min. The majority of them only provide about 1.2-2 L/min of continuous flow. A great source of information can be found at this site https://www.pulmonarypaper.org/summer-2021/. There is a book there that explains it all. I don’t think a POC would be adequate enough for your mom.