On oxygen and the power goes out!

PART ONE: WHAT HAPPENED HERE LAST WEEK WHEN WE HAD AN HOUR-LONG POWER OUTAGE

We experienced a short power outage a few nights ago. Afterwards we collected stories from neighbors about how prepared they had been. The results?

• Most neighbors had flashlights or lanterns, and they waited calmly for the lights to come back on.
• A few neighbors had NO lights – and they have since hustled to get batteries and/or lights – particularly, lights that attach to mobility devices!
• But one group of neighbors had no easy solution. These were people on oxygen when the power went out. Their stories were painful. They came to our neighborhood meeting with this question:

“What do I do if I am on oxygen and the power goes out?”

We didn’t have a good answer for these folks! In fact, in a previous emergency we had faced people having to evacuate without their oxygen, and we were unable to identify them, much less help all of them.

This time, we’re making another effort to find out how to help. As you will see, it comes down to this:

Your personal emergency plan has to have a way for you to manage without your oxygen or to have a way for you to continue to get it!

Remember, I am not a medical professional, so I do not present this information as a complete, medical answer. Please do your own research with your doctor and trusted caregivers and suppliers. This could be a life-or-death situation.

We have done a lot of research on this topic, and this is what we have discovered so far. These questions will give you a head start on putting together a PERSONAL emergency plan for yourself or another person on oxygen for how to respond if the power goes out.

Your first question should be: “How long can I go without my oxygen?”  

Contact your doctor. Emphasize that you need to plan for a power outage. Find out what you can expect if your oxygen is stopped for whatever reason. It’s possible you could cut back on activity and make it through OK – but only your doctor can answer this question.

Second question: “Can I get a reserve or back-up supply for my home?”

The answer here depends mostly on whether you own or rent your oxygen equipment. Here are three possibilities:

1. If you own your equipment, go back to the manufacturer for help buying a back-up solution. They may want to see a new prescription from your doctor to be sure they are giving you the correct solution.
2. Don’t forget to check with your utility company to see if they have special programs for people using “qualifying medical devices.” You may be able to sign up for a battery back-up or generator for when the power goes out. Some utilities offer rebates to help you buy a back-up power source. You’ll have to get approved for any of these programs in advance.
3. If you rent or your equipment is paid for by Medicare or insurance, ask your oxygen supplier about getting a back-up. Unfortunately, the stories from people about getting back-up equipment in this situation are patchy. If your supplier seems hesitant or unhelpful, keep reading!

“If I don’t have a back-up supply at home, where could I go to get the oxygen I need during a power outage?”

If you have to leave your home, we are now talking about evacuation. All the planning for evacuation comes into play, with the added concern about your oxygen supply. Specifically . . .

Your oxygen concentrator needs electricity. A safe place to plug in your equipment might be available at a local emergency shelter, a church, or a hotel in your town or nearby. But call in advance before you set out, to be sure they have the type of connection you need. And don’t plug into a multi-plug or extension cord!

If you use an oxygen tank, you may need to go to the emergency room at a hospital or an urgent care facility for direct access to oxygen. Some sources suggest you might get help at a local police or fire department. I checked with our first responders – they said they are not set up to offer oxygen and they would have to direct you to a medical facility.

Again, find out NOW where medical facilities are located near you. Find out if they have emergency power. Find out if they might be able to help if you are on oxygen and the power goes out or you are worried about running out of oxygen. 

How will I get there? Who will take me? Will they be able to explain my needs if I can’t?

These are all important questions for anyone with a mobility or medical issue. The challenge: thinking it through and making arrangements with a neighbor, friend or family member BEFORE the power outage hits! You’ll probably want to make a list with all the key info about your oxygen use, including a copy of your oxygen prescription. Attach your list to your emergency go-bag.

If you have the answers to all these questions, you will know what to do and when to do it in a short or extended power outage.

PART TWO: WHAT I LEARNED IN RESEARCHING THIS ARTICLE

If you are already on oxygen, you probably know much of this. But your friends and/or family may not – so share it with them! Also, consider sharing with neighbors who are talking about having to go on oxygen. These are the basics all of us should know about!

“What’s the first thing people need to know about emergency oxygen?”

This was the first question I asked of one of the oxygen concentrator sales people I talked to. (I talked to a half dozen of them. They were all extremely helpful.) Her immediate answer: “When a patient needs oxygen as part of medical therapy, it is prescribed by a doctor and delivered through a medical device. To get oxygen, you need both the prescription and the device. ” (In other words, you can’t prescribe it for yourself – and you can’t just simply order a device online.)

“What kinds of devices deliver oxygen?”

The two most common devices are an oxygen tank and an oxygen concentrator. The patient breathes in the extra oxygen from the device through a tube – a small clear tube that goes into the nose (called the nasal cannula) or a tube that feeds some sort of face mask. The amount of oxygen is carefully monitored. It is measured in liters per minute. Baseline amount seems to be 2 liters/min. and it can go up from there.

(There are also small bottles and cans of liquid oxygen available as non-prescription supplements. They are only a very short term solution to an immediate medical issue and don’t fit into this discussion.)

“What’s the difference between a tank and a concentrator?”

Tanks deliver a steady stream of oxygen. A concentrator can deliver oxygen in a steady stream or in “pulses” that fit to the way you breathe. Your prescription will specify how much and what sort of delivery pattern you need.

Now, as I was studying this, I was mostly thinking about preparing for emergencies. So with preparedness mind, here’s more  . . .

• An oxygen tank is the simplest device for oxygen therapy. The tank – called a cylinder – holds oxygen under pressure and releases it in a steady stream when the valve is opened. Ultimately the cylinder will run out of oxygen, so you’ll always want to have the next one ready. Big cylinders are heavy and pretty much stationary. Smaller cylinders can be wheeled around. Depending on how much oxygen you use, your tank could last for days or be empty after only hours!
• An oxygen concentrator is a machine with a motor that, when it’s on, pulls in the air around it, filters out particles and nitrogen (which is what makes up about 80% of our air), and delivers nearly pure oxygen. The concentrator can run as long as it has electric power. That power usually comes from a plug or from batteries. (It could come from your car battery – but you can’t drive while using your concentrator!) Obviously, if you are on oxygen from a concentrator, and the power goes out, your oxygen supply will stop.

“Should I buy or rent my oxygen device?”

That depends on several things. First, on how long you might be using it. Second, on how much flexibility you want (stationary model, different sized mobile models, a light-weight model to carry around with you, etc.) Third, on how much you can afford. You’ll always need a prescription to rent or buy.

Medicare and private insurance companies typically pay some or all of the cost of long-term rentals – but apparently, not so often or not at all for the higher-priced mobile concentrators. Those you may have to buy on your own. Costs for concentrators start in the hundreds of dollars and quickly move into the thousands.

“I’m on Medicare and use an oxygen tank. How do I get a back-up tank?”

When it comes to getting an extra tank for back-up, here’s what I have learned. I haven’t experienced this myself so your story may be different. But to start with the basics regarding Medicare . . . 

1. Your doctor issues the prescription for your oxygen: how much, how often, etc.
2. The doctor sends the prescription to a Medicare provider.
3. The Medicare provider delivers to you the device that fits the prescription.
4. Medicare pays the provider on your behalf. (You may have a co-pay.)

Now, providers don’t like to “lose” their customers. They want to keep you satisfied. However, Medicare wants to pay the minimum for your care. Medicare doesn’t want to pay for anything “extra.”  

So your provider typically gives you just what the prescription requires. When you ask for a better model of equipment, or an “extra back-up tank,” your provider may say, “No, not approved by Medicare.”

To be fair, some providers seem to schedule deliveries in such a way that they deliver multiple tanks at once.  In that case, you might have the extra tank you want during a power outage.

“I’ve already asked for and been refused a back-up oxygen supply by my Medicare provider. Any suggestions?”

Go back and take a look at the recommendations in PART ONE about having a plan to get to where you can access the oxygen you need.

Then, consider the following.

Isn’t the government constantly urging us to prepare for emergencies? At the same time, Medicare (the government!) seems to resist helping us get a back-up supply of prescriptions – including a back-up supply of oxygen! Doesn’t make a lot of sense to me – and I’ve worked with my own doctors, and worked around them, to try to build my own back-up prescription supplies.

But one person’s complaints are not likely to really go anywhere when it comes to making a change. To have a real impact, we have to put on our organizing hats and find others with the same concerns! Here’s how a group might go about making a change.

Start with your doctor. Find out why the doctor recommends a particular Medicare provider. Explain that your provider doesn’t seem able to give you what you might need for oxygen in a power outage (for example, extra tanks or extra batteries). See if you can be assigned another provider willing to provide back-up oxygen for emergencies.

Push harder. Find out who else in your neighborhood or community is getting oxygen from that same provider. AS A GROUP, go back to your doctors and share your concerns about the provider. As a group, file a complaint with the provider company – it should have a grievance procedure. Or call 1-800-MEDICARE to file a complaint against the provider company or even against your insurance plan! (For more suggestions, check out this resource.)

“That’s a lot of activism!”

Yes, it is. And there is no guarantee that your activism will make a change.

But if you are on oxygen and the power goes out, you need a plan. This sort of activism may be necessary. Certainly, everyone involved will become more knowledgeable. And you can be sure that everyone involved will be better prepared when the next power outage hits!

Virginia
Your Emergency Plan Guide team

P.S. The number of power outages is going up because of new, more violent storms and fires, and because our grid is aging. Don’t postpone planning for an outage, particularly if you are on oxygen.

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