John

Hi Jacqui,

I walk daily with two supplemental oxygen devices: (1) an Inogen POC in a  Inogen back pack and (2) a regular oxygen tank in a 2-wheeled cart attached to my rollator with a bungee cord. Note that the feasibility of (2)depends on the design of the rollator. Mine is a Drive rollator. Of course the oxygen tank could be used in the cart…[Read more]

Thanks Pete for that info. I take OFEV, but I was hoping generic Esbriet competition might at least moderate OFEV prices. Not much, I guess.

John R

Hi Jacqui,

This may be it: https://pulmonaryfibrosisnews.com/forums/forums/topic/wrestling-end-stage-pulmonary-fibrosis/

John R.

Hi Rand,

Based on my own brief experience (about 80 days since starting OFEV) I’d recommend that you stick with your normal diet unless and until you have a problem. Even the  manufacturer’s menu recommendations apply only “when you have diarrhea,nausea, or vomiting.” I have avoided nothing and only occasionally supplemented it with a modest…[Read more]

Hi Charlene,

My pulmonologist gave me brochures for both drugs at our first (out of hospital) meeting  (3/20?). I didn’t start either therapy until this January OFEV), due to a combination of factors: starting a clinical trial that precluded other therapies, minimal progression, cost and side effect concerns. My third month’s supply of OFEV is…[Read more]

I think it would be helpful. to post the poll. I took it, but can’t recall now what the questions were!

John

Just completed the survey as I complete my first month on OFEV (150 mg twice a day). Grateful for no side effects to date, as well as a negative blood test for liver issues. I was originally diagnosed 12/19 during a 5 week hospitalization for PF and lung embolism. My treating pulmonologist said she could see the IPF on an X-ray a couple of years…[Read more]

Hi folks. Just starting my second week on OFEV. So far no news (side effects) is good news.
I waited 2 years after my initial hospitalization and diagnosis (for IPF and embolism, which nearly killed me) to start OFEV, because for much of that time, if anything, I was improving rather than “progressing.” I was also leary of the side effects of bot…[Read more]

Hi all,

I  learned the other day that oximeters (at least mine) do not function in cold temperatures. I haven’t been using mine recently, because I don’t want to take my gloves off to use it. I made an exception the other day after finishing my daily walk and got no reading–either initially, or even after a few minutes indoors.

John

Thanks Bill for that very valuable information. I’ve bookmarked both the article and the video.

I have a stationary concentrator which I use during sleep in conjunction with my CPAP. I also get oxygen tanks which I use outdoors with my rollator. Both are paid for by medicare. Am I correct that if I wanted to add a portable oxygen concentrator I…[Read more]

Thanks Bill. That’s very helpful!

John R.

Does anyone know if POC marketers permit a prospective customer to “try out” a POC? I wonder if I could comfortably  tolerate pulse flow and the weight of a POC. Due to Covid travel and other restrictions I’m not actively considering a POC at the moment, but I might well be interested in the future.

Ross

Thanks all. I haven’t yet taken the plunge, so these discussions are helpful.

John

Losing power is is in all cases a hardship and  can even be hazardous for many. We made out a lot better than most. A majority of those who lost power in our state will have to wait until sometime  this weekend for its restoration. Some will have to wait until Tuesday! Although I have a concentrator, I have improved so that I use it only to c…[Read more]

Hi all,

Things sure have been busy while I endured 2-day power outage here (Connecticut). I now have even more to ponder and quiz my pulmonologist about.

The U of Fla. finding–that only about 20% of particpants end up with an IPF diagnosis–is startling. I am also unclear about the “different outcomes, different therapies” implications of a…[Read more]

Thank you so much Regina, Mark and Charlene!