Tips for the “Newbie” Oxygen User from Lessons I’ve Learned
by Roxlyn Cole
Tips for the “Newbie” oxygen user were gleaned from my personal experienc-
es from several online support groups, at Better Breather meetings, and in Pulmo- nary Rehab classes. When I was first pre- sented with an E-tank of compressed gas/ oxygen in 2003, my reaction was, “I am not THAT old!” (As if age has anything to do with it.) “Don’t you have anything smaller?” So began my journey through the maze of oxygen equipment and how oxygen delivery systems differ.
Compressed gas O2, liquid oxygen (LOX), and home concentrators (oxygen made from room air) have been available for many years. Each of these systems comes with different characteristics including the purity of oxygen delivered. There is a whole new generation of portable eonxycgoncentrators (POCs). These are battery powered and enable many people to travel with oxygen more conveniently. The different sizes and weights are also of major importance.
There is the big question of just what your oxygen supply company will provide to you. When I started on oxy- gen, there just wasn’t any information about exactly what equipment they had to supply. Even today, that information is often left to the oxygen user to figure out on their own. With a computer, you can look up the necessary information and connect with others.
A “Newbie” needs to quickly learn how to become their own advocate. This takes time, energy and can be exhausting.
Depending on the model, these can be noisy and get hot. Do not locate it under a thermostat. I did and it practically cut off the house heat! It also made the air condi- tioner work harder in the summer months. There is a bit of good news here, however. There is a tax deduction allowed to help offset costs of running the concentrator.
Since standard home concentrators re- quire electricity, they are useless when the power goes out. It is best you learn very quickly that you must have a back-up sup- ply of oxygen handy at home or wherever you go. The “scorned” E-tank? Now I keep several extra at home and in my car. Extra E-tanks are wonderful to have just in case your outing is delayed for some reason, as E-tanks just don’t leak. If you don’t have back up oxygen, you can go to a local fire station for help.
Liquid Oxygen (LOX)
Liquid oxygen portables are lighter weight and last longer, but they do eventu- ally lose their oxygen through evaporation whether they are used or not, so keep those E-tanks for back-up. If you are lucky enough to have your doctor prescribe liquid O2 for you, and you already have a concentrator, you may have to argue to be allowed to have compressed gas cylinders in addition. Tell your oxygen supply company that they are for back-up. I had to press the safety issue for my life and breathing. My company then allowed me to keep some E-tanks and a smaller portable device with regulator.
When a provider gives you a negative experience, ask your doctor to make it clear in their prescription as to what your oxygen needs are. How much oxygen delivery do you need at rest and for exercise or exer- tion? Have them give your highest delivery requirement; otherwise the supplier will not deliver suitable equipment. For example, if you need over 6 L/min for exercise, you will need a larger concentrator that delivers 10 L/min, because the one they normally deliver only goes up to 5 or 6 liters per min- ute. If you use compressed gas cylinders, you will need a regulator that is designed for higher flow delivery. The same is true with liquid portables. Normally they can deliver up to 6 L/min, but there are higher flow models available that can go from 1 L/min to 15 L/min. The supplier/provider will not give you these without the doctor’s explicit prescription.
Tubing: The Long and the Short of It
The actual method of oxygen delivery should be up to you – the cannula and tubing: long and short, thick or thin, stiff or soft, clear or green, long prongs or short ones, curved or not so curved, and even some that downright smell awful. If you are lucky and you were sent to pulmonary rehab classes you will learn a lot there. But, lacking that, if you have a problem and do not have a computer where you can find information easily, you should not hesitate to call your oxygen provider to ask about anything that bothers you about your can- nula, or how to use your system(s).
Ask for a manual on your equipment. Some oxygen providers give good instruc- tions but years ago, my introduction was 20 minutes, and I was left without any paper copy of how to operate my equipment. It was a scary and frustrating situation. Thank goodness I was sent to pulmonary rehab. I urge everyone to ask their doctor about pulmonary rehab classes and liquid oxygen. The long tubing (usually referred to as connecting tubing) attaches to your concentrator or liquid oxygen reservoirs.
Humidity is extremely important for your comfort when supplementary oxygen is being blown into you. Make sure the humidifier bottle is on properly, not cross threaded, or you may lose or leak out the oxygen before it even gets into the connect- ing tubing that goes to you. One of the first things everyone learns is one’s ears feel like they are being shaved off when someone steps on their connecting tubing and it brings them to a screeching stop.
Eliminate those ear sores. Clip the tube to your waistline so the tug goes there instead of up to your ears. Badge clips,
office clips, try anything that will hold it there. Some users even put a loop around their wrist by using a “swivel connector.” Smell of the cannula objectionable? Ask for another brand as we all have various sensi- tivities. Some like an especially “soft” hose. Remember a brand for which you have to pay extra is not routinely supplied. Better yet, look into Oxy-View™ glasses or Trans- tracheal oxygen delivery.
Take Care of Your Nose
Lubricate your nostrils. Water-based lubricants help prevent dryness, irritation, and cracking of the nose associated with supplemental oxygen delivery. Prongs too long? You can snip them down, ask for another model cannula, or you might even try a child-size cannula.
Untangle Tubing Kinks
Connecting tube tangles and snarls can be controlled. Carefully coil the 25 or 50 foot long tube and neatly place it into a net bag (the type used to keep delicate items separated). Place it in the clothes dryer with a few buffer towels around it. Remove after 10 minutes. Check to see if it is warm, soft and supple. Upon removal, quickly stretch it out to its full length. It’s nice to have a helper here, one at each end to stretch it out flat to cool. Using swivel connectors between tubing lengths helps too. Your oxygen supplier can provide them to you. No dryer? Hot (not boiling) water will do the trick to soften the kinky hose, but it is messy. You can even lay the tubing out in the hot sunshine and it will soften the tubing and reduce those kinks to slinky softness where it slithers about behind you.
Try an Alternative to Nasal Cannula
There are alternatives to the nasal cannu- la. If the cannula is objectionable you can use the Oxy-View™ glasses, visit www. oxyview.com. They are good for delivery up to 5 L/min.
Want to get everything off your face if you are using oxygen 24/7? Check out Transtracheal Oxygen Therapy (TTOT). Call them on their toll free number at 1-800-527-2667. Ask them to send you a brochure and DVD. That is the system I switched to eleven years ago so I have been “necking with oxygen” since 2006. It is fabulous. I have kicked myself that I hadn’t done it sooner Visit www.tto2.com for information.
I have no financial interest in either of these companies. I just know them to be great products from which I have benefited tremendously in the quality of my life. I have a TTOT support group in addition to my blog about lung health and equipment which I then post to Facebook. I try to help everyone and you can certainly feel free to share my article.
Love your supplemental oxygen! It is a lifeline, not a leash supplying the energy that every cell in your body needs!