Connect
← Return to Interstitial pulmonary fibrosis
Discussion
Interstitial pulmonary fibrosis
Lung Health | Last Active: Sep 2 9:03am | Replies (58)Comment receiving replies
This is a new question.
My spouse has IPF and currently is provided portable oxygen and a concentrator with Inogen. We are very worried about power failures and have made numerous efforts to obtain oxygen canisters as back up for power outages. To no avail! We are always told that as long as we have Inogen he doesn’t qualify. All of the others in his pulmonary rehab have emergency canisters provided by their provider of concentrator. It is a frustrating situation. Two pulmonologists have tried to assist us and oxygen companies with canisters refuse even if we pay as long as we have Inogen. Last week I was told that by law the concentrator provider must provide emergency canisters. We live rurally and often encounter outages. I have notified power company but they can’t promise priority. Inogen said “call 911; go to ER; use your phone charger.” All impractical long term solutions.
At level 5 Inogen batteries last little over and hour and we only have two.
Who knows the ropes on this situation? Surely we are not the only ones in this situation.
I have considered a portable generator as back up as all other efforts seem to fail. I am very frustrated.
I have tried to reach the American Association of Oxygen Providers and number not in service! One more frustration.
One company told me there is a law that concentrator provider must provide emergency coverage.
Anyone know of this law?
Replies to "This is a new question. My spouse has IPF and currently is provided portable oxygen and..."
I have never heard of a law that requires your oxygen concentrator provider to supply you with bottles.
One normal bottle of oxygen on 5 lpm would only last a little over an hour.
What you need is a stand by power generation so that you can maintain your home concentrator and charge your batteries on your portable supply.
We recently installed an automatic power generator that runs on natural gas, but a potable gasoline power generator would also keep your batteries charged.
Good luck and please let us know if you find that law.
God bless you and your husband.
I could not sign in under Totty for some reason today.
I have finally made the decision to purchase a home generator to cover us during emergency power outages after several months of investigating options. Now I am concerned about others in similar fearful situations who can not afford a generator. More investigative work needed on this.
Connect
@totty My wife has PF .....and we have all three oxygen sources. There was never any resistance by our supplier to give us what we asked for.....they were extremely cooperative.
Are you going thru Medicare on the billings? Or private insurance, or paying out of pocket?
It seems to me that this supplier of yours is making up it's own rules. There's no reason for them to deny you the canisters, as long as your doctor prescribed. and they get paid, one way or an other. It just doesn't make sense.
Perhaps try speaking to someone higher in authority at your supplier. It could be that whomever is telling you this....is misinterpreting the rules. Is there another supplier available to you?
Finally, consider reaching out to the Pulmonary Fibrosis Foundation, for help. (PFF Help Center (844) 825-5733) or http://www.pulmonaryfibrosis.org .....they have some outstanding resources to help you.