SUPPLEMENTAL OXYGENHow to deal with it, what equipment is available, what your rights are, what your provider won’t tell you, and helpful hints: a patient’s viewpoint.
If your doctor recommends that you have supplemental oxygen, it is not the end of the world, it is a new beginning. “On oxygen,” you will feel better and will be able to do things that previously left you breathless and exhausted. “Oxygen Bars” are the latest craze, with people flocking to them for expensive hits of the miracle air to cure everything from fatigue to hangovers, so try to think of it as having your own personal Oxygen Bar or, as a doctor once told me, “The price you pay for living in paradise”
It is natural to feel nervous and upset when entering this new way of life, which often occurs at a time when you feel the least able to cope with it. Suddenly your home is full of potentially explosive devices, plastic tubing, cannulas, a whole new vocabulary you have to learn, and you’re facing “life on a leash”—life on the tether--and who wouldn’t panic. I know I did.
In retrospect, as I enter my fifth year on oxygen, one of the most helpful pieces of advice I received came from a nurse in Grand Junction, who told me, “It isn’t rocket science. If your oxygen levels are low, turn it up. If they’re high, turn it down.” It is important to learn the basics about oxygen, and to demystify the equipment by finding out as much about it as quickly as you can absorb the information, and then to take it a step farther by finding out what else is available and how to get it.
THE BASIC EQUIPMENT
The concentrator. This is a machine that runs on electricity and manufactures oxygen out of the air. This is the instrument of choice of your oxygen providers because it is virtually maintenance-free and the oxygen is free. The advantage for you is that the concentrator will run forever as long as there isn’t a (disadvantage) power shortage. For car travel, smaller models are available that plug into cigarette lighters. The disadvantage is that if you go out and about you will be dependent on heavy, short-lasting metal tanks of compressed oxygen for your portable tanks. Another disadvantage is that the concentrator is noisy—put it on towels and enclose it in a closet or bathroom. If you are only on oxygen at night, the concentrator is a good option, but if you need oxygen all the time and are active or work, it’s a bad option.
Compressed oxygen. This comes in metal canisters of varying sizes, resembling propane gas tanks. The canisters are operated by a gauge that regulates the amount of flow. An advantage is that these tanks are reliable, and you can accurately tell how much oxygen you have left. The disadvantages are that the tanks are heavy and last only a short time. If you are on a concentrator at home, you will be supplied with these tanks; otherwise, you will only need them for travel.
Liquid oxygen. Liquid oxygen, or LOX, is rapidly becoming the delivery system of choice for patients, though it is a thorn in the side of the oxygen providers because it is more expensive for them and they have to refill the tanks every week or two. The advantages of LOX are that the tanks are silent, and you have many more options for portable units, which you fill from the mother tank in your home. A disadvantage is that liquid oxygen “leaks.” If you fill a portable tank in the morning, and turn it off when it’s half-full, it will be empty the next day, whereas when tanks of compressed oxygen are turned off, they’re off. The biggest advantage is that the portable liquid oxygen tanks are lighter and last longer. To get liquid oxygen, your doctor must specifically prescribe it. Portable tanks come in two sizes, lasting 3 to 6 hours at 2LPM; they are equivalent in weight and cumbersomeness to the compressed air tanks, and are less reliable, but they last longer.
HELIOS. I don’t pretend not to be prejudiced about Helios, because it dramatically changed my life. This is a liquid oxygen delivery unit that weighs 2.5 pounds full and lasts for 10 hours at 2LPM. You can carry it like a purse, wear it in their optional hip pack, or buy a backpack (the Camelbak Blowfish backpack fits it perfectly and is well-ventilated) for it. It can be filled from any liquid oxygen mother tank. A disadvantage is that since this is an intermittent flow system that only releases oxygen on the inhale (which is why it lasts so long), it makes an audible puffing sound whenever you breathe in. Another disadvantage is that Helios units are often not covered by insurance and, being still in the developmental stage, are somewhat unpredictable, and take several weeks for repairs, so you should buy two of them, one for backup. But if you’re going to be on oxygen for a long time or for “the duration,” you should sell your grandmother’s pearls to get Helios—it’s worth it.
When I got out of the hospital, I was a mental and physical dishrag, and, thanks to the foresight of my doctor, came home to both a concentrator and a large liquid oxygen tank, so I had the best of both worlds, but didn’t know a thing about either one of them. It is not intentional omission, but more a matter of everyone assuming, including you, that you have been properly “educated.” When asked if you have any questions, you don’t know that there is anything else to find out.
As an example, I had been left with a large, unwieldy “portable” tank to be filled from my liquid oxygen tank. At this point I was barely able to totter to appointments with doctors and the hospital. My first encounter with this tank came when I naively thought that since I was only going to be gone for an hour for a short medical visit, I only needed to put a small amount of oxygen into the tank. The ensuing Episode—running out of gas in the doctor’s waiting room, nurses scrambling to locate an oxygen canister, I in a
panic—taught me my first lesson the hard way: always completely fill the tank.
For several months I carried that tank around with a strap that cut into my shoulder and one day, up at the hospital for tests, I was bitching about it and someone said, “Why aren’t you using your cart?” Cart? What cart? I called my oxygen suppliers, who said, “You didn’t get a cart?” and promptly delivered a lightweight cart designed to hold the tank.
I dragged the cart around for the next year and one day, when my oxygen supplier was filling my mother LOX tanks (by then I had two), I was bitching about the cart, which snagged on EVERYthing, and he said, “They do make backpacks for these tanks. Your insurance won’t cover it, but I could get you a used one for 40 bucks.” “Bring it on,” I said, and again, my life improved. A few weeks later he asked how I was liking the backpack and I said it was light years better than the cart, but I wished they made smaller, lighter tanks. “They do—there’s one half this size, but it only lasts for three hours.” Three hours, as it happened, was perfect for my situation. I was then working two hours each morning and afternoon, with a two-hour lie-down at my home five minutes away. I got the little tank and thought that life couldn’t get much better until Helios, which was just getting off the drawing board and into the market place, radically changed my life.
Still, the learning process goes on. It was only a few months ago that I found out that cannulas (the plastic bridles with prongs up your nose) come in both 4’ and 7’ lengths—I had only been supplied with the 7’ models. Since I am 5’ tall, the plastic connectors between the 7’ cannulas and the tubing to my mother tank had ample opportunity to snag themselves on various obstacles in my house, primarily the corner of my refrigerator. The simple substitution of a 4’ cannula eliminated a four-year hassle.
OTHER EQUIPMENT
Connectors. Speaking of those plastic connectors, oxygen patients need to know that while there probably a 25c difference in the cost, there is a world of difference between connectors that swivel and connectors that don’t. If you have “solid” connectors, your tubing will tie itself up in knots, requiring daily unraveling and, untended, can compromise your oxygen flows. Always ask for swivels.
Pulse Oximeters. When I relapsed and was flown back to the hospital for another three expensive weeks, my insurance company decided that it would be in their best interest for me to have an oximeter on hand. Oximeters are devices which measure your oxygen level and heart rate when you put a finger into them, are relatively new on the market and four years ago cost over $1,000. Mine is clumsy and already antiquated, but trim models are now available on the internet (go to Google, enter “pulse oximeter”) at less than half that price, and every oxygen patient should have one. It is short-sighted of insurance companies not to insist upon it, since they’d save more by eliminating emergency room visits and flights for life than they would spend on oximeters. There is nothing so reassuring, when feeling “weird,” as putting your finger into an oximeter and getting a reading in the 90’s, where it’s supposed to be. WHEW! And if you’re in the low 80’s, you’ll know to call for help instead of waiting until you land in the hospital in the 60’s.
You can use the oximeter to check your levels when you’re exercising, learn when you need to crank the oxygen up (the results are instantaneous). It is a security blanket. Sell your grandmother’s silver to get one.
“Bubblers” and “Christmas trees.” Bubblers are plastic humidifiers, which you fill with distilled water and screw into your main tank—liquid oxygen or concentrator--to humidify the oxygen. If you aren’t supplied with them, ask your oxygen provider. You should run them through the dishwasher every week and replace them every month or two, and you have to be very careful to ensure that they are screwed on correctly and working well. Your tubing connects to the bubbler. In the absence of a bubbler, the only other way to get oxygen out of the tank is with a Christmas tree, a small, green, plastic evergreen-shaped connector which you screw into the tank as you would a bubbler, and attach your tubing to it.
Flow gauge. Every oxygen patient should have a flow gauge but, like oximeters, they are not part of the required equipment. This is a $2 (well, maybe $5) item that you use to check to see if the level of oxygen your tank is set on is really the same as that coming through your tubing. If your tank is set on 3LPM and the gauge says that only 1.5LPM is being delivered, you know you have a problem with the equipment. This could be a kink in the tubing, a malfunction of the tank, a problem with the “bubbler” or a simple loose connection. Over the course of several months, when I was feeling increasingly punk, I underwent thousands of dollars worth of tests (echogram, blood tests, chest X-rays, nuclear X-rays for blood clots, stress test) only to find that the problem was in the equipment.
Travel. You have the right to travel, and all you need to do is tell your oxygen providers where and when you’re going and oxygen will be provided en route, waiting for you at your destination. Medicare and all but the most flimsy insurance companies cover this, though you may not be able get liquid oxygen in some places.
Planes are pressurized to 8,000-feet (probably to keep passengers docile), so anyone on oxygen in this valley will need oxygen to fly. The airlines are both good and bad about this.
It is a major inconvenience that you cannot get oxygen at all between Aspen and Denver—they say the overhead bins are not large enough to hold their oxygen tanks--and you cannot bring any of your own tanks on board. It is essential to lay the groundwork well in advance, because even the major airlines have a limited number of seats with overhead bins equipped for their oxygen tanks, so make your reservations early, advising the agent that you will need oxygen ($75 per leg) on your flights. You will be asked for your doctor’s name, address, phone and fax number, so have them at hand.
Once your reservations are cleared, call your oxygen providers and tell them your schedule. If you are traveling to sea level and can breathe there, you can skip this part, but if you aren’t absolutely certain you should order oxygen anyway—that will be easier on everyone than discovering, when you get there, that you do need it after all. Your oxygen providers will arrange for oxygen to be waiting for you at your destination, the providers at the destination will call you to confirm your order, and these transactions demand your full attention. Be very, very specific. Write down the names and numbers of everyone you speak to, and carry them with you on your trip.
My first travel experience, visiting my mother in New Jersey in the company of my daughter, was a nightmare. The New Jersey oxygen company had delivered a concentrator and 50-feet of tubing to my mother’s house, as well as a couple of metal canisters of compressed oxygen, one of which my brother-in-law brought to the airport when he met our plane. We got to the car and discovered that the canister was not equipped with a gauge—we had oxygen, but no way to get it out. At my mother’s house, we found the concentrator and 50-feet of tubing, as requested, but no cannula, no bubbler, no Christmas tree, no way to get the oxygen out. Irritated to have been roused out at 11pm the provider, a man named Rocko, took the attitude of, “Lady, you ordered a rental car but you didn’t say you wanted WHEELS on it,” but quickly backed down in the face of three generations of angry women.
Six months after a trip to California, I got a call from that oxygen supplier saying I was $900 in arrears for a concentrator that had never been returned following a five-day trip. It turned out that they had picked the concentrator up at the hotel the day we left, as arranged, and had, in fact, rented the unit out several times since, but if we hadn’t kept those names and numbers of everyone we’d spoken to, we’d have been in an nasty spot.
Once you get to the Denver airport, check in early and be sure to mention that you have oxygen ordered for your flight. You can bring your own oxygen with you into the airport. If you are flying alone but are accompanied by someone dropping you off, ask for an escort pass so that person (only one) can go with you to your gate and onto the plane, taking your oxygen tank away once you get plugged into the tank in the overhead bin. If you’re on your own or flying with someone, you can arrange with Special Services to have one of their representatives see you onto the plane, take your tank away, and meet your plane on your return trip. You will need compressed oxygen tanks for these transactions, because they don’t leak away, and will need more of them in your car for the return trip, since any liquid oxygen tanks would be long empty.
When you get to your gate, don’t assume that because you have a boarding pass, and have already discussed the oxygen, that all is well--go to the check-in counter and ask them to make sure that oxygen is indeed installed in your overhead bin. Then, take advantage of early boarding, get on the plane as early as possible and mention the oxygen to the first attendant you see. I only travel a couple of times a year, but have experienced delayed flights because no one knew how to turn the oxygen on, or the oxygen tank hadn’t been installed at all, and you can avoid the Wrath of Passengers with simple precautions.
Once you’re on the plane, you’re at the mercy of the attendants, whose attitudes vary. On my last flight, I was given a nasty little cannula which was so short it was like a noose, to be strapped to my head with an uncomfortable rubber band. When I pointed out that I had a 7’ cannula in my carry-on bag, the flight attendant recoiled with horror, as if I had
told her I had brought a cobra on board. “Passengers cannot use their own equipment!” On another flight, with a less hysterical attendant, it wouldn’t have been a problem. You
never know.
EMERGENCY: RUNNING OUT OF AIR. Every oxygen patient, no matter how diligent, will run out of air. Sometimes it is dramatic, as when your tank falls over and you don’t realize it until your car is filled with a white cloud and oxygen is whistling up your cannula (My Grand Junction doctor said, “That’s when you don’t want to be lighting any matches.”), but usually it will be because a tank has run out, or there’s a major kink in the tubing—someone stepping on the tubing won’t do it, but slamming it in
the car door will--or your connectors have become disconnected, or your bubbler is malfunctioning. Friends and relations have a hard time understanding why we don’t know at once that we are out of air, but it has been my experience that the first thing that happens when you’re out of oxygen is that you get stupid, because you’re not getting enough oxygen to think straight. After all these years, I still never realize that I’m out of air at first. I’ll think, “Gee, I’m feeling funny,” and then, “Gads, I’m feeling awful,” before finally checking the cannula. The best solution is to plan ahead when you still have your wits about you: have an extra tank in the car if you’re going out and use your handicapped permit so you can park close to your destination.
Soon after I got my Helios tank, I attended a day-long meeting in Glenwood Springs. I had brought my 6-hour clumsy LOX portable tank for backup and felt secure that all would be well, but I made two mistakes. One was to turn up the Helios tank to 2.5, thinking that a little more oxygen might make the endless meeting more endurable, resulting in it running out. The other was that I hadn’t brought a cannula for the backup tank. Helios tanks require a special cannula with two connectors, while the others take a single connector cannula. Panic. My co-workers drove me to Valley View Hospital, where I tried to explain the situation to the ER receptionist, finally got to see a nurse who sized up the situation immediately and came running back with a “normal” cannula. My relief was so great I burst into tears and hugged her. You want to avoid predicaments like that.
MISCELLANEOUS OTHER TIPS
The worst thing you can do is succumb to the feeling that it’s all so much trouble, and so overwhelming, that you just want to stick to the house and watch re-runs. Only a few scant years ago, when the only option was compressed oxygen, that was the reality, but it isn’t now. Go to Rehab, and, after you find out what you can do, you can join a health club, but Keep Exercising. I thought I was “exercising” well enough on my own, but until I went to Rehab I didn’t have a clue.
In the first months when you’re on oxygen, you may wake up in the night and find that, in your sleep, you have ripped the cannula off your face and thrown it on the floor. Cut thin strips of “hospital tape,” or Bandaids, and tape your cannula to your cheekbones—you’ll learn how much is necessary to wake you up when you feel yourself pulling on it. Too much and you’ll be damaging your skin and getting adhesive all over the cannula.
In emergencies, try to remain calm. Remember to smell the flowers (inhale through the nose) and blow out the candles (exhale gently through pursed lips, for twice as long as the inhale).
If your mother liquid oxygen tank suddenly runs amok and begins spewing white clouds, grab a wooden spoon or the blade of a table knife and gently whack its nipple. If this happens with your Helios or other portable tanks, it will take an hour or so for them to get a grip on themselves—this is why you need spares.
If you get water bubbles in your tubing and have no spares, turn your tank on full blast and you may be able to blow them out.
If your Helios tank stops puffing when you should have plenty of oxygen, replace the cannula. If you don’t have one at hand, try switching the two connectors.
Use your oximeter regularly, especially if you’re feeling weird. Call your doctor. Check your equipment. Pump your oxygen providers for information. Go on the internet. Network with other oxygen patients in the area. Do not go gently.
Su Lum
Aspen, CO
