[Judi Pittman]

What interesting info on oxygen being shared here.  I’d like to add a couple of things, to help Katherine and Kristin and maybe others.  My husband has had diagnosed IPF for 3 yr now (they now think it was there for several years earlier) and recently was using O2 on 5L only when he walked on treadmill.  None walking to bath or sitting in chair.  That was in early Feb.  But on Feb 17 he had a massive GI bleed that led to exacerbation and I nearly lost him.  Once that happened he immediately went to 8L but now 24/7.  I brought him home on 2/23 and he seemed near death.  We called in hospice on 2/27.  They hooked him up to two concentrators with a Y tube connection, each is set at 4L as instructed by O2 provider.  The first weekend, one of them failed (2 a.m.) and I quickly figured out I needed to establish a fast emergency connection to the large portable tank they gave us.  It is is about 4 ft tall and holds about 8 hrs worth of oxygen at the rate of 8L.  I now have a single connector and short tube hanging on the portable, so when a failure happened again, it only took me about 1 minute to switch from the double connector between the concentrators to the singe on the portable.  Also easy to switch back when problem was resolved (overheating in the corner where the tanks were but now has more air flow).  We also got a generator which uses regular gas or propane in case of power failure, which happens fairly often in our suburban area.

In the six weeks since he has gotten stronger and now can walk to and from the bath from our bed which is a walk of about 12 or so feet.  He still has to have the O2 24/7 at the rate of 8L.  The exertion of walking even with the O2 drops his oxygen to mid to high 60’s and it takes a couple of minutes for it to return to about 90 or 92.  We also added a recliner to the room just 4 feet from the bed and he spends 2 to 4 hours in it each day watching the world spin through our patio doors.  He has maintained this routine now for this time and I’m thrilled that he is even able to do this month.  As to the question of how ‘long’ the exacerbation lasts, it is my understanding that the additional damage done to his lungs due to the GI bleed, will not heal.  His lung function test in January was 51% but that was when he was only using O2 to exercise.  Now it is much lower, but no way to know how much.

My question for anyone who may use levels of O2 this high, is what next?  When Hospice was called in death seemed imminent and I praise God that he is stronger and more alert now, but what is next?   Will he just be plateaued at this level or will he continue to require more O2 as time goes by?  I admit to fatigue because he is 82 and I am 76 and getting up 3 to 8 times each night to help him to the bathroom (uncover, help with slippers, help onto walker, guide oxygen tubing along the way; then reverse) is exhausting.  He never went potty during night before the exacerbation and now does often so something changed internally.  I rest when I can next to him during day, (twin hospital beds make a great king sized bed) but there is frequent yo-yo-ing up and down to move this, find that, fill water, find the remote, fix meals, bathe and change clothes, do little housework here and there, etc.  Hospice tech comes in 2 x week to bathe and shave and nurse comes in once a week now since he is doing better.  I never thought ahead on what this final stage would be like but now that I’m in it, I seem to have a lot of questions.  Is there anyone in the group who can give me guidance?

[Judi Pittman]

My husband has now been on Esbriet for about six months.  He hasn’t had any side effects at all.  He doesn’t seem to have an appetite in that he doesn’t ‘want’ food but eats it when we fix it.  He has however lost about 10 pounds since June.  Since we’re new at this whole thing, the advise may not be there from us; in fact, more likely we’ll be asking questions but I’d like to contribute comments when I can.