The purpose for my writing here is to encourage some of you older guests that there is still life after IPF. I am on 10-12L of O2 during the day when I’m moving around some but mostly sitting and my O2 level can drop into the 70’s when I walk very short distances, say 20 or 30′. At night I reduce the O2 level to 6L.
At age 83 I’m not planning… Read more

Mike, I have been on OFEV for over 2 years and seem to have much the same reaction to activity as you do. I’m on 13L of O2 during the day and my levels will still drop to in the low 70’s just going to the bathroom which is only 20’each way from my chair. At night I lower the level of O2 to 6 or 7L. In addition to the IPF I also have PAH and… Read more

Ron, I’ve been on OFEV 150mg 2 times daily, with food and then down to 100mg 2 times daily with food for over 2 years with no problem with low O2. I suggest you look for some other reason for the drop in O2. I have very little problems with digestive track either.
Earl

I’ve been on Ofev for going on 3 years. I started on 150mg 2Xday and my doc had me get blood sample 3 times annually to check my liver function. At one point he suggested going to 100mg due to the effect the Ofev was having on my liver. I take an imodium tablet every other day and eat a meal with the Ofev so I have no serious digestive… Read more

I find that fatigue is what most of this disease is.  I’m used to going-at-it and getting it done. But guess what, those days are over.  My wife used to call me the Ever-Ready Rabbit.  I seldom ran out of pep.  Now…..I…. have….. to…. go…..slow.  Yes, pacing yourself for the day is all I know now.  We are all different and I’ve been… Read more

Like many of you, I’m using between 6 and 10L of O2 and I have been using Vaseline in my nose for 6 months or so and it is the only product I have found to help me. I apply it in each nostril a couple of times a week and it helps keep the crusty build up soft so it can be removed easier, and it keeps my nose from getting sore. I’m not sure why… Read more

Karen, I talked briefly to my pulmonary therapist, and she said it all depends on your own condition, and since there are a number of issues that we each have our own treatment.  In my condition she said “you don’t have to worry about being overly oxygenated”  but that doesn’t mean your condition would have the same answer.  You will have to… Read more

Marianne,

I have been on O2  24/7  for over a year @ 8LPM during the day and 6L at night when sleeping.  I am using Oxygen Concentrators that run 24/7 and the cost is mostly covered by my insurance.  I occasionally use a tank when away from home but most of the time I use a battery operated Concentrator that pulses the O2 so the supply is… Read more

Rich, my Anthem Blue Cross and Medicare cover most of the cost. My cost is less than $25 /mo.  I lease all the equipment. I do have 5 small O2 tanks here at the house for use when I need a constant flow of  O2 instead of the pulse flow from my POC.

Hi there, I have been on supplemental O2 for over a year now. Diagnosed with IPF and PAH and using O2 concentrators when home @ 8L/M during the day and 6L/M at night. Have very little use of O2 tanks. When I’m sitting and driving I use a 6L/M pulse unit that works well.  It is an OxyGoNext unit.  I can’t imagine the hassle with tanks.  I have… Read more

I am 82 and also on Tyvaso for the past 2 + months.  Started at 3 breaths 4 times a day, 4 hours apart and now I’m up to 18 breaths each time.  Causes some coughing during the session but nothing I cannot tolerate.  No known side affects at this time.  I also take OFEV 100mg two times a day with food.

I’ve been diagnosed with IPF and PAH,… Read more