Backpacking Through Life

By Cheryl Switzer

Learning to live with supplemental oxygen

Cheryl is the President of PHCentral. She is also the author of an ongoing personal journal in the Patient Diary Section.

I have always wanted to go backpacking, but this is not quite what I had in mind. There are no little packets of freeze dried tuna casserole in my pack, no bedroll, no change of underwear or sunscreen. I carry something much more practical - a little tank of liquid oxygen. I've been carrying this precious cargo for nearly two years now and it's been quite a journey.

A couple of years ago, I learned I have PH secondary to restrictive lung disease. Like some folks with visibly odd torsos and/or unusually shallow chest cavities, my lungs are restricted in a tiny space making it impossible for them to inflate fully. I have always been aware that my chest deformity - which is not noticeable to others when I am clothed - was compromising my lungs. What I did not know was that my situation would change over time. I never for a moment thought that my lungs would be so compromised as to render me disabled, but I was sadly wrong.

I had never heard of pulmonary hypertension before June of 2000, but I was not surprised that my situation was serious. I had the sense for a couple of years that when I finally found out what was wrong with me, it would be devastating and life-altering. I had been slowing down little by little and I now suspect my pulmonary artery pressures have been elevated for a very long time. Even as a child, I was never able to compete in sports or manage to quite keep up with my friends. Even so, I lived a fairly normal existence and did most of what I wanted to do until things began to change.

As I moved into my forties and then on into my fifties, I began to feel increasingly sluggish and sometimes very short-of-breath. I stopped taking health walks during lunch breaks at work. I found reasons to stay home more. Eventually I began working from my home office to avoid the tiring commute downtown. On a business trip to Denver one year, I could barely manage the short walk from my hotel to the training class I was conducting. I felt lead footed and exhausted. The humidity in Austin made me feel as if I was suffocating. The vague unwell feeling I had always had during air flights had grown to something akin to panic. I avoided stairs as much as possible. I know my friends, who were very into keeping fit in their middle years, thought I was just a lazy bum, and I had no excuse to offer.

I vowed to walk more, to get more exercise each week, but it was difficult to get motivated. I never felt one endorphin rush no matter what I did. Exercise was just plain unpleasant. By the time I went in for evaluation, I was dragging.

After two days of testing at my local teaching hospital, I was released. During my exit interview with a doctor I did not particularly like, I was given the "two to five year" speech and nothing at all to hope for. I don't think he even mentioned supplemental oxygen to me. It is my hazy recollection that it was the kind discharge nurse who went over my meds and therapies with me, one of which was full-time use of supplemental oxygen. After both the doctor and the nurse had left me alone to wait for the wheelchair - my carriage out of there - I stood with my back against the wall, tears welling up in my eyes Just the day before, I had stumbled into that hospital untethered and now life would never be the same again.

On the day of my hospital discharge, the hospital arranged to have a concentrator, a liquid reservoir and a clumsy little o2 canister delivered to my house. It was all for me, the invalid at age 53. What a bitter pill.

The only two people I had ever known to require supplemental oxygen were old men; my father-in-law suffered from emphysema from years of smoking and my neighbor had developed black lung disease from having worked in the coal mines. They were both house-bound and tethered to oxygen concentrators that hummed and whirred non-stop. Had my life been reduced to this, I wondered.

I might have chosen to bury my head in the sand, but that is not who I am. Even though I dreaded being perceived as old and done-in, I did not reject the oxygen concentrator. I placed the machine out of earshot, set it to the 2 liter flow as prescribed, and dragged the 50 foot line around behind me.

After a few days of tears, and fears that I would die any moment, I started focusing on my medical education which was sorely lacking. There was a lot to learn. I wanted to know why nobody could fix me and what oxygen would do for me.

After two weeks of self imposed house arrest, I filled up the portable canisters from the reservoir of liquid oxygen and made my neighborhood debut. I can't explain why I did not feel particularly self-conscious dragging the little basket along, I just didn't. Maybe it's because I am a woman of a certain age and used to being invisible to anyone under thirty. Maybe it's because I live in a city where anything goes and I've learned over the decades to be who I am. It certainly did not spoil my fashion statement. I had been living quite comfortably for the past few years in casual pants and running shoes. All I knew was that I had been told to use my oxygen as much as possible and that's what I intended to do.

I bought an oximeter to keep track of the oxygen levels in my body. The little that I did know about my need for extra oxygen, I had learned from some of the doctors in training during my brief hospital stay. They had explained that the goal was to keep the blood oxygenated at about 95% or above and with my own oximeter, I could test myself under varying conditions and levels of activity. Over time I could feel the difference in my body. I would play a little guessing game with myself. "Guess the SATs" it might be called. I started paying attention to my body when I felt a bit unwell and I would guess the saturation value before placing the sensor on my finger.

I spent many hours on the Net learning everything I could about oxygen, normal lung function, respiration, lung disease, treatment options and o2 delivery systems. I also began to hang out on Internet bulletin boards where others with lung disease and/or PH would post. I found a wealth of useful information.

I learned about the exchange of o2 for co2 in respiration. I learned how atmospheric pressure at different altitudes affects the exchange of gases. I gained a rudimentary understanding of the heart-lung relationship in providing oxygen throughout the body. I learned that the amount of oxygen in room air is 21% everywhere and why the guy on the Net selling oxygen pills is a second rate hustler. I learned that oxygen was discovered in 1774, but not used for medical purposes until the late 1800's and that portable oxygen, suitable for use during exercise, has only been prescribed by physicians since the 1950's. I learned about edema (AKA water weight), right heart failure and clubbing of the fingernails.

In my reading, I found a short article by Dr. Thomas Petty titled "Oxygen, Exercise and Bioenergetics" that states, supplemental oxygen can lower pressures in the right side of the heart which is especially good news for those of us with PH.

In this same article, Dr. Petty explained that people with poor blood saturation were not able to increase their exercise tolerance no matter how much they worked at it. This explained why my attempts to 'get in shape' had never improved my stamina, had never been beneficial to me. He also explained that with the benefit of supplemental oxygen, muscle mass could increase and tissues become healthier.

I read about Pulmonary Rehab programs and got signed up. One doctor told me to stay off the couch, to do some upper body work and get moving. I got moving and kept my eye on my SATs, upping the o2 as needed to keep the saturation level high.

I began to have a basic understanding of the role oxygen plays in keeping all cells, tissues and organs in the body healthy and functioning. Without an adequate supply of oxygen, the body breaks down. I began to understand that my particular condition is chronic, why I had always felt lousy at higher elevations, why my stomach had been growling so much for months prior to my use of supplemental oxygen and so on and so forth. This little body of mine had been crying out for more oxygen for a long time and I was deaf to it.

I found it very disappointing, during this time, that none of my doctors seemed interested in furthering my medical education. I was pretty much on my own. I did finally find a doctor that I could discuss things with, but I had to take care to prepare my list of questions before my appointments, stay on-topic and respect his schedule.

A couple of months into this new phase of my life, I learned about a new portable liquid system that was lighter and easier to carry than the clunkers I had been pulling around in a small wheeled basket. My own oxygen supplier at that time - one of the largest in the country if not THE largest - had no plans to offer this new equipment so I set out to find it myself. I contacted the manufacturer, a German firm, for a list of suppliers in my area and found a smaller supply company in a nearby town. The little tank was delivered after a month or so of red tape and I found it to be a great improvement. I fashioned the shoulder strap into a little harness and started wearing it on my back. My hands were free and it was comfortable. All systems were 'go.'

By this time, I had lived for about three months tethered to an oxygen device of some sort or another and I had experienced a marked improvement in the way I felt. I had more energy, a little spring in my step again, and I could walk for miles without becoming short-of-breath. I also had a basic understanding of why supplemental oxygen was important to me.

About one year into 'backpacking' I adopted a slightly new approach, a pro-active approach to living with my oxygen. I decided the 2 liter flow I had been advised to maintain, was a standard and not to be taken literally. I had seen during exercise how the need for o2 goes up, how at various times and during various activities, the need changes and I decided to take control.

I wear the little tank slung low on my back so that I can access the knob that controls the flow rate and I actively adjust the flow to meet my needs throughout the day. When I am seated and my SAT's are high, I turn the 'throttle' down to '1 liter' or off completely. If I'm walking around the house, I leave it at 1 liter. When I climb stairs, I pace myself using the purse-lipped breathing technique I learned in rehab and adjust the flow of oxygen to provide 2 or 2 1/2 liters. If I'm outside walking up an incline, I rev it up a bit higher.

My doctors, with whom I've developed some rapport, leave this up to me. My relationship with them is good and they see me as highly motivated and as someone who "has a clue."

I read on the bulletin boards at times, posts from people who are struggling to accept their need for supplemental o2. Some admit to being vain, feeling self-conscious or awkward in public. Others say it is as natural to them as putting on a pair of glasses.

I think my young friend, Brian summed it up pretty well the first time he saw me sporting my new backpack. He said, "well, I guess you just gotta do what you gotta do." And with that having been said, we all sat down and enjoyed our dinner together at a lovely Japanese restaurant and talked over sake and odd little delicacies. 

April 2, 2002

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