Being Active with a Lung Disease is a “Leisure Activity”

This post is authored by Evans Wilson.  Evans has Pulmonary Fibrosis (PF) and Pulmonary Hypertension (PH).

Mary asked me to write an article on my experiences related to oxygen, getting it, not getting it, using it etc. It is notable that I am writing this April 10 after being asked to do so March 17. The gap speaks to a lack of energy over the past month rather than a lack of time.

As background, oxygen, at least in the United States and Canada, is considered a drug. It must therefore be prescribed. Unfortunately, insurance companies, oxygen providers, and Medicare all determine whether a prescription is justified based on an O2 desaturation to 88% during a 6 minute walk in the doctor’s office. You must requalify for this prescription every 12 months. Certainly anyone meeting that standard should be prescribed oxygen. However, that standard favors those whose diseases have progressed to the point where they are largely housebound. It discriminates against those who are earlier stage and trying to live a healthy active lifestyle such as is proper for everyone in society. I believe this is a violation of the Americans With Disabilities Act. It discriminates against the oxygen impaired until they are end stage in their disease. This must change, though I see no movement in society to do so. Of course, no one in society is even aware of this problem unless they need oxygen or personally know someone who does. People who do need oxygen often lack the energy and don’t live long enough to form a significant organized movement to raise a voice for change.

I was diagnosed with pulmonary fibrosis and pulmonary hypertension in October 2011. PF is a progressive scarring of the lungs that is ultimately fatal. There is no cure, but there are 2 drugs receiving FDA approval within the last 2 years that can slow the rate of decline by perhaps 20% per year on average. Pulmonary hypertension is a heart and lung disease that leads to right heart failure as the right side of the heart enlarges and weakens, working harder and harder to supply oxygen to the lungs through narrowed passageways in the pulmonary artery and the lungs themselves. It is also progressive without a cure, but a number of drugs have been brought to market in the last 20 years that are extending life for some well beyond the 3-5 expected life span 20 years ago. The median survival rate for people with PF and PH, like me, is currently 3 years. I am in my 6th year. I attribute my good fortune to genetics (my mom is 102), to living a healthy lifestyle in terms of diet and exercise, to having a positive outlook relative to my disease in spite of the statistics, and let’s be honest, to just plain good luck, because I know many others with similar profiles to me who have died.

I have a background as a runner. I went to the state meet in cross country all 3 years in high school. I led my team there 2 of those years. I later placed 4th in my category in the Rose Bowl Quarter Marathon in my 20s. I first knew I had a problem when I walked up a short but steep hill and could not get my breath back at the top. I thought I was going to die. I had a similar incident carrying a 42 pound log 50 feet to my fireplace from our patio. In both cases I recovered, but it could have gone the other way. It took 2 1/2 years for my HMO to diagnose me. By that time, I had gotten so bad I could barely make it into Costco from the parking lot in cold wet weather.

People diagnosed with PH are generally tested for sleep apnea. I had it. I started using a CPAP machine at night to treat it. This is not typical, but in my case, I started getting better from treating my sleep apnea. PF never gets better, but my PH started to improve once my night time oxygen deprivation was eliminated. I didn’t know anything about oxygen at that point. I qualified for it. I should have been given it, but it was never offered. I didn’t know to ask for it. I started walking around my house with an oximeter on my finger. I continued to get better. I stopped walking whenever I dipped to 88 or lower and waited for it to rise back in to the 90s before resuming my walk. Eventually, I was having to stop less frequently and began to be able to throw in a flight of stairs every now and then. Finally, I was able to graduate back to the gym.

That summer, we took a vacation to Yellowstone and Grand Teton National Parks. I had been advised by people in the Pulmonary Hypertension Association to take oxygen with me because of the high elevation we would be at. My doctor at the time said I wouldn’t need it. “You’ll be fine” he said because he considered me to be high functioning. I wasn’t fine. I was OK as long as I stayed in the car or let my wife move everything in and out of the car to our hotels, but that was not the vacation we planned. I went to the ER in Yellowstone. They had oxygen, but would only give me what I needed to get safely out of the park to a lower elevation, not to sightsee. I called my doctor. He was ready to prescribe it at that point, based on the emergency and probably based on guilt, but we would have had to drive over 400 miles to get it and return to where we were.

How did I get the oxygen I have today? I had a lung biopsy after returning from that vacation. I had complications that caused me to spend most of the next 33 days in the hospital after the procedure. I was on oxygen in the hospital, so I was sent home with an oxygen system, 2 refillable “D” size tanks and a large machine that both delivers oxygen as needed in the home and refills the D tanks after they have been used outside the home.

So I have oxygen and I’m OK now. Right? Wrong. Since finding better doctors the last 18 months, I have been prescribed 2 drugs for my PH. They also discovered I had previously unknown blood clots in my lungs and prescribed a drug to treat that. So, in spite of a 10% drop in my lung function last Nov/Dec, I still function at a high level relative to those who are end stage. My standard work out is 30 to 60 minutes on a treadmill in the gym. I desaturate to 88% anywhere from 10-17 minutes into a normal gym work out. This does not qualify me for oxygen (see paragraph 2 above). The medical community is in universal agreement that the oxygen challenged should not engage in any activity that desaturates them to 88%. Therefore, people like me are faced with 2 choices: 1) find a way to get oxygen, or 2) live a life without the healthy exercise universally recommended for all by the medical community, and withdraw from all life experiences longer than 6 minutes that lead to a need for oxygen such as hiking, walking in a hilly or high elevation area, certain kinds of housework, etc. Of course the 2nd choice leads to more rapid disease progression and incredibly diminished quality of life that is totally unnecessary. My city is considering giving out free heroin to people who want it, but oxygen can be hard to come by for those who need it to live an active healthy lifestyle.

I can work harder during my 6 minute walk in the doctor’s office than I do during a normal workout, sometimes enabling me to just barely qualify for oxygen. But I’m never sure whether I’ll qualify. I fear losing my oxygen. At the end of my first 12 months on oxygen, my oxygen supplier neglected to force me to requalify. At the time, I wanted to purchase a portable concentrator to use for high elevation travel. I was afraid I might not qualify in a 6 minute test, so I ended up purchasing a $2500 concentrator direct from the manufacturer with a prescription from my doctor, but without using either my insurance company or oxygen supply company. It should have been covered by insurance and provided by my oxygen company, but I was afraid I might lose my oxygen altogether if I got tested when I was having a good day and couldn’t desaturate inside the 6 minute limit.

One year later, I needed to requalify right in front of a planned 6 week trip involving 3-4 weeks of travel and day hiking in remote high elevation areas in New Mexico, Utah, Colorado, and Arizona. You can’t run for the test. You can’t do the test outside. You can’t do the test with stairs. Cold or wet conditions and/or stairs or hills are real life conditions that greatly increase the need for oxygen for the impaired. Nevertheless, the only way to get oxygen is to demonstrate a need for it during a 6 minute level walk at room temperature in the doctor’s office. I busted my butt and managed to desaturate to 88 for about 2 seconds right before the 6 minutes were up. Whew! I qualified again!

Problems over. Right? Wrong. I calculated I would need 13 additional “D” tanks, with regulators, beyond the 2 I already had so that we could pull off our trip. There are no oxygen supply companies anywhere near where we planned to spend the bulk of our vacation. We needed to be completely self sufficient. We carried our large home concentrator to refill tanks used during the day, but they could only be refilled at night in the hotel where there was electricity to plug it in. Oxygen consumption at high elevation is greater. Refilling tanks at high elevation is slower.

My doctor prescribed the 13 tanks and regulators. After a long delay, my oxygen supplier made a determination that I really only needed 2 tanks and 1 more regulator. That is what they delivered. Further communication between them and myself and my doctor was fruitless. I left alone on a drive from Seattle to Dallas, where I was to meet my wife, with what I had. I blew a tire in the middle of nowhere in Colorado at near 10,000 feet. I was unable to change the tire. My insurance company couldn’t get a tow truck to drive to where I was just to change a tire if there was no tow involved. Finally, an off duty police officer drove by, saw me, turned around, and came to my rescue by changing my tire.

I made it to Dallas. I called my oxygen supplier and demanded they give me what my doctor prescribed before we headed out of Dallas back to high elevation for the vacation portion of our trip. They finally agreed on the phone to give me the tanks. I missed 5 hours of family time with my wife’s family whom I had never met to go to where the Dallas oxygen supplier was located to pick up the tanks. I got there. The tanks they were giving me turned out to be non refillable tanks. I refused to take them, eventually getting in a shouting match with the facility manager, threatening to sue them, until they finally relented and gave me refillable tanks. They still refused to give me the regulators, saying they were a convenience item only and not a medical necessity. They did give me one regulator that could handle a flow greater than 8 liters, but a portion of that was made out of cheap plastic. It broke the 2nd time we used it.

I personally filled every tank before we left Dallas 2 days later, now carrying 15 full tanks with the means to refill them. These tanks enabled us to take a 3 mile hike to Delicate Arch in Arches National Park, a 2+ hour hike at 8000 feet in Bryce Canyon National Park, about 3 hours of the famous River Hike, actually hiking in a river in a narrow canyon in Zion National Park, and some limited walking around at the Grand Canyon. We needed all 15 tanks. At one point, we got down to 14 empties due to the fact that on active days we were using oxygen at a much faster rate than we could replace it at night. The lack of regulators turned out to be a big problem. We started our hike at 8000 feet in Bryce Canyon with 5 tanks. We figured we would need 4. We carried an extra one for safety. Hiking Bryce is like hiking the Grand Canyon. You start at the top and hike down. Going down is optional. Coming back is mandatory. When switching to the 3rd tank at the bottom of the canyon, we discovered 2 of the remaining 3 tanks we were carrying, which I had personally filled, were empty. Refillable tanks have a toggle switch on top that is used to open the tank so that oxygen can flow to the person using the tank. Unfortunately, these tanks had been subjected to jostling in our overhead luggage carrier as we drove on our trip. We discovered the hard way that a regulator is not just a convenience item. The toggle switch can be jostled without a regulator, causing the tank to slowly empty. This can not happen if a regulator is in place on the tank. We knew I did not have enough oxygen to make it out of the canyon on the one remaining tank. My wife had to leave me, hike out, and get more oxygen from our cabin and bring it back to me to get me out of the canyon. So unnecessary. And dangerous. A regulator costs about $20.

One more problem with oxygen providers and medical insurance. I participated in the Seattle Marathon November 27 to raise $50,000 for the Pulmonary Fibrosis Foundation. (I placed last at 10 hours 55 minutes and 4 seconds, but raised $36,000 to date and have a donor matching the next $5000 donated through the end of April. You can donate at firstgiving.com/fundraiser/evans-wilson/seattle-marathon.) Instead of supporting me and my worthy cause, they fought giving me the oxygen I needed to do the walk. It took almost 2 months of pressure from my doctor and myself before they agreed to give me the oxygen for the event. It was considered a “leisure activity” and therefore not a legitimate reason for the use of oxygen. They still failed to deliver the oxygen as promised. I had to drive 15 miles to the company office and refuse to leave until they gave me the tanks.

My insurer is Premera Blue Cross, a large basic insurance company. My oxygen company is Apria, the largest oxygen provider in the United States. They offer the most services, but the service is pathetic, as detailed above. You can’t even call any of their branch offices. You can only call a national call center. That means you end up talking to someone who knows nothing about your case and does not represent the actual office you will be getting your service from. My Dallas problem above was a direct result of this lack of direct communication with the center providing the service. It also means that to have any kind of real communication with them, you have to physically go to their office and force a conversation. Premera Blue Cross went more than a year classifying Apria, the largest supplier in the US, as out of network. I had Apria before a change in my wife’s work resulted in a change to Premera in Nov, 2015. None of Premera’s explanation of benefits (EOBs) showed that Apria was out of network. They just put the expense into the deductible column on the EOB, not mentioning anywhere that this was actually a separate out of network deductible. I only discovered this after being overcharged $5600 in 2016 by Premera and filing a claim to get the money back. A decision is expected from them this week. I will sue if they do not refund money they have illegally taken from me. How can the largest company in America be out of network? In March of this year, Premera reclassified Apria as in network. The problem is, as detailed above, it is not easy to switch oxygen companies based on the whims of an insurance company. You need a doctor appointment, a new prescription, a new 6 minute walk, etc., all at patient time and expense, to switch. It’s not right.

Here’s another problem. I don’t rent my house. I don’t rent my car. I don’t rent furniture or anything else. It is always cheaper to buy for long term use. It is difficult to buy a home oxygen concentrator. The oxygen supply companies I am familiar with only rent them because these concentrators generate oxygen, a drug requiring a prescription. The thinking is if you own your machine, there may come a time when you no longer need oxygen. You would then have access to a prescribed drug that you no longer have a prescription for. In general, the only reason a person with lung disease would no longer need oxygen is because they either died or managed to have a successful lung transplant. So, the oxygen impaired overpay and risk having their equipment taken away from them every 12 months if they have a good day on their test.

Any attorneys reading this? Wheelchair ramps are everywhere. The city of Seattle is in the process of losing a class action lawsuit because not every sidewalk curb in the city has a ramp to street level at every intersection. People in wheelchairs have a powerful lobby. Many of them live a long time. The public can see the obstacles they face because they are very visible when ramps do not circumvent stairs, etc. The problems of the oxygen impaired are not so visible to the general public, only to those very close to them. Most needing oxygen are too tired or their disease is progressing too rapidly for them to form a critical mass for lobbying that their needs be adequately addressed. Ironically, the cost for addressing their needs would be tiny. We pay the cost of our equipment over time. We pay for the electricity used to generate oxygen. We just need to be able to get what we need.

To summarize:

  1. The oxygen industry, with Medicare support, is set up primarily to provide oxygen to those sitting in their homes waiting to die.
  2. One difficulty of living with lung disease that is not yet end stage, therefore, is getting access to the oxygen necessary to do more than walk 6 minutes in a doctor’s office under ideal conditions, i.e. being able to live as normal a life as your disease, with proper oxygen therapy, will allow. Many need oxygen, can’t get it, and live sedentary lives as a result until they become end stage.
  3. The criteria for oxygen therapy, therefore, needs to change. It needs to take into account the oxygen needs a person with lung disease has to do ordinary positive things like a 60 minute gym work out, taking a walk longer than 6 minutes, doing housework, etc. Physicians need to be given latitude to prescribe oxygen based on the individual need of their patient and have their prescription covered by insurance.
  4. Oxygen supply companies and insurers need to support their oxygen impaired patients, not hassle them, and in some cases even endanger their lives.
  5. I do not believe this will happen voluntarily. Someone needs to file a class action lawsuit to force compliance with the Americans With Disabilities Act, such as has happened multiple times the last 40 years for those in wheelchairs. Any capable attorneys out there willing to take this on? The pay off of a successful suit to the attorneys could be huge. The oxygen impaired don’t want money. Just oxygen. I am willing to be a plaintiff and can supply names of other people also willing to be members of the class.

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