Using supplemental oxygen

[George Richard]

Thanks for all the great info. I’ve had IPF for about 7 years and just went on Oxygen 2 weeks ago. I appreciate all the info on machines, I’ve got a machine for nights and cylinders for day if I need them, but wasn’t aware of the dangers of not using them. It’s starting to get through to me. I fought as hard as I could, and after having 2 foot surgeries was nowhere near where I had been. I was uninformed of all the requirements to stay healthy and despite normally being in the high 80’s would exercise into the 70’s. Unaware of the damage I could do to myself. The Oxygen prescription came about after a particularly bad 6min walk test.
I’ve just started looking at machines and would like to figure out which ones would let me stay most active. I’ve done martial arts for 30+ years and would like to do the least strenuous parts of those as well as Kayaking, biking and Hiking.
Gonna check out LOX machines if anyone has any recommendations. Already talked w/companies about the Inogen and a couple other pulse machines.
I guess it’s Oxytime and I thank you all for sharing, makes me feel less like an old freak.

[Stephen B. Strum, MD]

I am not a pulmonologist but a hematologist/oncologist. My approach in using anything considered therapeutic is based on the adage: The proof of the pudding is in the eating. Therefore, what I would advise you to do is as follows:
• speak to a respiratory therapist that is hopefully aligned with your idiopathic pulmonary fibrosis (IPF) team.
• ensure you have a high quality pulse oximeter (network with others on the BioNews forums or look at reviews on Amazon) and see what your oyxgen saturation (O2sat) is at rest and while walking (ambulating). Checking a biologic system under “stress” such as exercise or walking is always the most intelligent approach. So, see what your O2sat is as above.
• ask the respiratory therapist if a different mask or canula would give you a higher O2sat or just experiment on your own assuming the mask (non-rebreather vs. re-breather) vs. canula yields different O2sat values.
▶︎ of course discuss with your primary pulmonologist all of the above.
I am just starting to work with a gent with IPF who also happens to have prostate cancer. My input here is to educate, not to serve as any form of medical treatment.
Ask questions and expect answers. I am also a patient with a rare blood malignancy and I too must be pro-active with my physicians. Don’t ask– don’t learn — don’t benefit.

Let us know how you do with feedback so everyone benefits.
Stephen