Why does PFNews tell us that “Let’s Talk About Supplemental Oxygen” was posted 9/29/25, when neither its first nor latest post was on that date? Valuable topic, but accuracy and honesty please.

I alternate appointments with 2 pumonologists. I’ll see my Yale doc (where I did the trial) in June with hopes of an update.

Hi Sam,

I participated in a clinical trial of saracatnib in 2020 not long after my initial diagnosis of IPF. My diagnosis occurred in conjunction with a 5 week hospitalization for IPF and lung clots. I completed my participation in the trial, but covid caused delays so that the trial was not completed until 6/30/24.

My question: how long does…

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Hi Pam,

I’ve had the same diagnostic tests you mention, as well as some others. All pointed to or confirmed the conclusion of pulmonary hypertension. As a result I’ve been taking sildenafil since last August and a recent echocardiogram showed a significant improvement! The catheterization was the last test before I started sildenafil; I can’t…

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I have been a grateful recipient of financial assistance from the Healthwell Foundation this year and last. It has an annual cap but covers my OFEV cost under a Medicare drug plan through the first 9 months of the year.

John

<p class=”p1″>I participated in a trial at Yale in 2021 for about 6 months. My understanding is that they had very poor participation due to Covid, but resumed the trial this Spring. I alternate appointments with my Yale pulmonologist and a pulmonologist here in Middletown,CT and will be seeing the Yale doc next month. I’ll ask for news about… Read more

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… 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:

Wrestling with the End Stage of 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… 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… 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… 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… 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… 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… 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… Read more

Thank you so much Regina, Mark and Charlene!