Dear COPD Coach,
I have recently run into a problem with my local oxygen supplier. I am on liquid oxygen at a high flow rate 6-10 liters; my Helios Marathon only goes up to 6 liters/minute. I am having more and more difficulty getting around out of the home using only my Helios, and now my Helios Marathon is starting to malfunction. When I called my supplier they said there was nothing they could do about my Helios (no replacements available and there was no other portable available to meet my needs).
They then suggested that I install two concentrators and combine them to produce between 8-12 liter flows for while I’m at home. Friends who have just one concentrator say that their electricity costs have gone up, with two concentrators running I hate to think of the costs. When I asked about what I can do when I go out, my supplier said I should switch to compressed gas tanks which, as we all know, don’t last as long as liquid oxygen and are much heavier and bulkier to travel with. Any thoughts on what I should do?
A frustrated LOX user
Dear frustrated LOX user,
These certainly are trying times for liquid oxygen (LOX) patients. As you may have heard, many oxygen suppliers are trying to get out of the LOX business, for many it is a losing proposition. Their costs continue to go up and their reimbursements go down every year. That’s why so many people are being urged to switch to oxygen concentrators and/or compressed oxygen.
As far as malfunctioning equipment or the need to upgrade (there is currently a new portable oxygen reservoir that is available that provides up to 15 lpm constant flow), you should talk to the manager of your oxygen supplier to find out why you can’t get a replacement or an upgrade that meets your specific needs. In most cases, this should resolve your problems. If it doesn’t, you may need to have your physician contact your supplier and get what you need based on medical necessity (many times as the years go by our requirements increase. This info is not noted in the supplier’s database; which they use for insurance reimbursement).If your physician can’t get the local supplier to supply what you need, then contact your insurance provider’s customer service dept, tell them what is happening and request their assistance.
The steps outlined above have usually worked for me when I was in situations like yours. However, if all this fails to get you the result you are looking for, contact your state health department, attorney general, or the Federal Americans with Disabilities agency.
As for your need for high flow oxygen while at home, oxygen suppliers seem to be going more with the push to concentrators. These are ideal for your supplier in that they require little to no work on the suppliers part and they meet many patients’ needs. However, possible problems with concentrators are the increase in electrical costs over 500 watt/hour, the hassle of trailing a 20-50 foot hose behind you as you walk about your home or the lack of high flow rate (which may not be as big a problem if your supplier can get a new high flow concentrator for you).
The electrical costs are substantial; you should contact your electric supplier and ask about any discount/hardship programs you can enroll in. If you do go with the concentrator be sure to notify your local electric utility. They will often make arrangements for you in case of a power outage. As to long hoses trailing behind you, be careful and make sure you or others don’t get tripped up on them.Generally try to keep the hose coiled up as much as possible and you will avoid most problems.
The use of compressed oxygen tanks is becoming much more prevalent now that LOX has become so hard to get or keep.Luckily there are some new developments in the use of gas cylinders that may prove helpful to patients with high flow needs.One is the high flow regulator that can deliver up to 25 lpm. When set at 10 lpm you should get up to 62 minutes +/- from an E-tank or 40 minutes +/- on a D-tank.Another device starting to see use in patients with high flow needs who suffer from respiratory insufficiency is the NIOV. The NIOV (noninvasive open ventilation) uses an e or d tank to provide oxygen; much like a ventilator NIOV works on demand instead of constant flow. This device can improve O2 saturations and increase most people’s ability to exercise and reengage in life.With settings that can take a person from rest to higher activity, the NIOV typically can run on high setting for up to 100 + minutes on an E tank. At rest an E tank will last from 3-5 hours or more.
Ultimately, the final choice in decisions about your healthcare are yours to make. If you don’t get the answers you need, don’t be afraid to take your concerns to the next level.
Good luck in your fight,
The COPD Coach
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