Portable Oxygen: A User's Perspective
Overview

Introduction

• A nurse walked you around with a thing on your finger, which the both of you watched display the digits 91, 90, 89, and finally, 88--the "magic" number, or

• The nurse took blood from an artery in your wrist and had it analyzed.

Focus of Website

This website focuses on the portable equipment you use. It brings together information collected from those who make, distribute, service, and use the equipment. It is the purpose of this website to help you understand yourself and your portable oxygen system so that you can get the full benefit from it. A portable oxygen system provides you with the freedom to leave your home and move about untethered. Its oxygen may be compressed or liquid. For it, you may wear a cannula or mask, or you may have transtracheal delivery. Oxygen may be delivered in a continuous flow or with a pulse that occurs when you inhale. 

To keep it operating correctly, you must perform certain maintenance tasks, including monitoring and adjusting flow rates, swapping out tanks, and installing washers and batteries. When your system fails, you must be prepared to take appropriate action. Most important of all, if the portable you first select is not supporting your needs, you must take the steps necessary to change to another system.

You should know how much weight you are capable of carrying. Portable oxygen systems weigh between four and ten pounds, depending on the size of the oxygen tank. If you cannot carry this weight in a shoulder bag for an extended period, you may want the flexibility of choosing a system that is pulled in a cart. 

You may find your body’s demand for oxygen is unpredictable due to weather conditions or when you are in unfamiliar surroundings where this new mobility will take you. It would be helpful if you could define in a measurable way your requirements under familiar circumstances and have a portable system that meets these requirements. 

There is a lot of help out there from physicians, respiratory therapists, and oxygen providers. They are prepared to answer the questions you have about portable oxygen. This website will help you understand yourself and your requirements for portable oxygen, and prepare you to articulate those questions.

It also helps to "know the street talk." To be able to talk with your doctor and nurses, and even with other similarly afflicted friends, it helps to know the language. A good source is provided by the no air to go website in their acronyms and abbreviations section.

Understanding Your Breathing

You can learn more about your breathing by answering the following questions: 

• What is your breathing rate, at rest and under exertion?
• During how much of a breath are you inhaling?
• Do you inhale more deeply or more frequently under exertion? 

When you compare your answers to these questions with other people, you will find your way of breathing and your lifestyle is uniquely yours. That is the reason there are so many choices of portable oxygen equipment. It is also the reason the portable system that a friend raves about may not be the one for you.

The Good, Bad, & Ugly

First, the bad. There are several things that will deny you the full benefits of this therapy.

• If you are in denial, get over it. You will find many positive benefits of this therapy. We all need help and support. You may find it helpful to join a group of folks who have been where you are. There are several Internet sites which are run by patients for patients. Each contains a lot of information, chat rooms, and email lists. They are:
  
  COPD Support, Inc.
  COPD-ALERT
  COPD International, Inc.,
  EFFORTS. 
  
  These sites are very popular and there are many members on their lists. When you join one of the email lists, you may want to select "digest mode" when you register. All messages for the day will automatically be collected and deliverd in one package about the time your coffee is ready in the morning. As a newcomer to a list, you will probably spend some time as a "lurker" until you feel comfortable with the group.
  
 
• If you have COPD and want to learn more about it, try the RespHealth website.

• If you have a problem that interferes with breathing through your nose, such as a deviated septum, get it corrected. If you cannot, you should seriously consider a transtracheal. Consult with your physician and visit Transtracheal Systems, Inc.  

• You may have a vanity problem wearing a cannula and carrying a portable on excursions from your home. On such trips the demands your body has for oxygen are higher than while at home. You must shed concerns about how you look and dawn the "cloaks" that make you feel better. Listen to Ginny of Connecticut: 

I've been using supplemental oxygen for 2 1/2 years now. Even my bout of lung cancer could not keep me away from dog obedience competition for very long. I do a lot of travelling for dog shows and will be away every weekend this month. If I didn't have my oxygen lifeline I'd never be able to continue. And I've met lots of nice, helpful folks and educated many others. People are delighted to see me still competing and I have been an inspiration to some who would have quit except for my perseverance. I now have a Helios and love it. And when I'm away I get a small portable reservoir to keep in my van. Don't be afraid to get out there and keep on having fun. Oxygen makes it possible for you to get out and go places, make new friends. 

• Smoking. If you currently smoke, you must stop. It is down right dangerous to have lighted smoking material in the same room as your oxygen.

• If you must smoke, read the section on "Oxygen Safety" very carefully. In particular, read my personal story in that section. Protect yourself and your loved ones--have a functioning smoke alarms in your home, and allow a great deal of space between smoking materials and your oxygen. 

• Your best friend is exercise. Ask your physician to enroll you in pulmonary rehabilitation at your local hospital. Continue to exercise after Pulmonary Rehab ends. In endless ways, your body will thank you for it.

• Be "compliant" with your medication and do what your physician tells you to do. Do not stop or increase medication without consulting with him or her. This also means using oxygen at the times and levels prescribed. Also, work out with your physician a plan so you can start medication immediately at the onset of a sinus or lung infection. To have such a plan may keep you out of the hospital. 

• For most of us, this is the first time in our lives when we must learn to manage our health. You probably have a great team of specialists, including your family physician, pulmonary specialist, respiratory therapist, and oxygen provider. All these folks are there at your bidding. It is up to you to learn about your disease, how to manage it, and how to take the best advantage of these specialists. You may want to learn more about this from Bill Horden at his website COPD Advocate . 

And, you maybe confused about who pays for your oxygen therapy. I can help you a little with this. You can get more information from Mark Mangus . (Select "Liquid Oxygen and Medicare" from the bottom of the Table of Contents.) You should also call your insurance company and inquire. 

Last year my insurance company was primary. My oxygen provider charged $445 per month for home oxygen and $84 for portable oxygen. Because my insurance company and my provider had an agreement, all was written off except for $113 and $22, respectfully, which my insurance company paid.

This year Medicare is primary for me. My oxygen provider charges the same as last year. After the Medicare write off, the provider gets $219.50 and 36.10, respectively, of which I pay 20 percent. 

At this website you will find much of what you need. You will also find references and links to other websites which are valuable resources.

Top of Page

About the Author

I have known that I had emphysema since the early 1980s. I tried every method to stop smoking that was available, with no long-term positive result. My wife joined me in this effort and we attended a stop smoking class in September 1993. She quit, only to develop a cough and be diagnosed with lung cancer a month later. (She is a ten year survivor of lung cancer.) Even though I qualified and received a disability tag for my car because of my condition, I continued to smoke, but secretly. 

In late 1996 I was admitted to the hospital with a lung infection. Three months later, I was again admitted for the same reason. I can remember my family doctor and pulmonologist standing a the foot of my hospital bed after a particularly bad night, asking if I was ready to give up smoking. I was and I did. 

I was put on oxygen. At first, it was only at night. It wasn't long before I was on it 24 hours a day, 7 days a week, at first at 2 Lpm. Today, I am on 3 Lpm at night, 8 Lpm during the day, and 10-15 Lpm with when I walk or exercise. The bottom line about my condition is that I have the use of 12 percent of my lungs.
 

Other than my COPD, I am in good health and have a positive outlook on life. I am enjoying retirement. I am more often out of the house than in. I rely on portable oxygen and a scooter to get me about. I have an RV, and my wife and I travel in it several times a year. This current year we have had trips to Miami, South Dakota, Orlando, and Cape Cod. I have a lift for the scooter in both my car and the RV. 

I have a Ph.D. and a background in research and instructional development. My background has given me the instinct to recognize where an educational or training program is needed. When I first went on oxygen and found no information about it, I decided to develop this website. 

This website is entirely written, managed and paid for by me.  As a courtesy, I provide you with links to the websites of equipment manufacturers, oxygen providers and others who have information that might be of interest to you. The presence of such a link does not mean I personally approve of the website's contents. 

I believe in both prayer and self-determination. I believe it my responsibility to manage my health. But, to do so I need the best information. I have discovered what I need to know about oxygen and can now pass that information on to you. 

My best wishes, 

Pete Wilson

Impulse is a registered trademark of AirSep, Inc. 
Impulse Select is a registered trademark of AirSep, Inc. 
Oxymatic is a registered trademark of Chad Therapeutics, Inc. 
PulseDose is a registered trademark of DeVilbiss 
CR-50 is a registered trademark of Mallinckrodt 
O2N Demand II is a register trademark of Victor Medical, Inc. 
Wave 6200 is a registered trademark of Contemporary Products, Inc. 
O2 Advantage is a registered trademark of Western Medica 
Companion Stroller is a registered trademark of Nelco Puritan-Bennett 
Companion Sprinter is a registered trademark of Nelco Puritan-Bennett 
Companion 550 is a registered trademark of Nelco Puritan-Bennett 
Helios is a registered trademark of Puritan-Bennett 

© 2001 & 2003 Copyright 
Peter M. Wilson, Ph.D. 
Founder of PortableOxygen.org