Breathing. Its one of the easiest things in the world to do. Until you can’t. If you’ve never had to wear supplemental oxygen, there are a few things you probably never thought about people going through just to breathe. When you can’t breathe, the process to get supplemental oxygen can be difficult and frustrating. When people get easily short of breath, even everyday things like showering or grocery shopping can become overwhelming or even impossible to do. There are challenges everyone on oxygen faces. Here are some things about supplemental oxygen you should know.
- Getting supplemental oxygen is harder than you’d think.
It seems like it should be pretty straight forward. A person can’t breathe, so they get supplemental oxygen. It isn’t that simple. In order to get oxygen, someone has to go through several tests to show the need for oxygen. Apparently gasping for air at your doctor’s office just isn’t enough.
One of these tests is a 6 minute walk test. The idea is to walk as fast as you can on a completely flat surface for 6 minutes to see if your oxygen levels drop. A pulse oximeter is used to measure the oxygen saturation levels in the blood. You may have had one put on your finger at a doctor’s appointment. Most people are in the 98-100 range. To qualify for supplemental oxygen you have to be at 88 or lower. The problem with this is it doesn’t take into account issues like what if a person has an injury that prevents them from walking fast enough? And the test doesn’t include other real life situations like stairs or inclines, higher altitude or even carrying things, like the oxygen tank or portable oxygen concentrator (POC) that you’re trying to qualify for.
Believe it or not, people who find themselves easily out of breath moving around their house or taking a shower have had the insurance company tell them they don’t qualify for supplemental oxygen. Do the insurance companies really think the nose cannula with its 5+ pound carrying accessory is a trending fashion statement that everyone is trying to get for free?
- You can’t always get what you want. Or Need.
Once you are approved, it doesn’t mean that your needs will still be met. Apparently the only obligation is to supply people with enough oxygen so they don’t die. A persons requirements are not taken into account, like age, mobility, work (my sister was told by her oxygen delivery person that “People on oxygen don’t work”), strength, etc. No one is offered a portable oxygen concentrator (POC). Tanks and a home unit are what everyone gets. Now POCs are not for everyone. They just don’t generate enough liters of oxygen to meet the need for many people. And if a person requires a continuous flow (instead of only on inhalation), the POCs that offer continuous are typically too heavy. For those that can use POCs, they usually have to buy them out right, which is thousands of dollars, all out of pocket.
- Ball and chain.
Wearing oxygen is like having a ball and chain. When people are home, they have a much longer chain (tubing/hose) so they don’t have to drag the ball around with them. When they leave home though, the chain is shorter and ball is in tow. Whether a person uses oxygen tanks or a POC, it is still something they have to carry, roll and lift. These devices can weigh anywhere from four pounds up to twenty pounds.
Since I carry a purse, this means I’m leaving the house with a bag across both shoulders. I carry water with me everywhere, so my purse isn’t light either. Before I got used to my POC, if I was out all day my shoulders and back would be hurting by after an hour or two.
- On a leash.
Several times a week my head is jerked back because my hose has caught on something. Sometimes it’s the car parking break, sometimes it’s a door knob. Sometimes I get up and start walking, forgetting that I need to pick-up the POC and take it with me.
My husband and friends have offered to carry the concentrator for me. While I appreciate the thought, their faster pace will just have me struggling to keep up or being pulled by my nose cannula.
- On a timer, so plan ahead.
Whenever you’re out of the house, you’re on a timer. Whether it’s a tank or a POC, the oxygen will stop flowing at some point. It’s important to plan ahead even when going out for a couple hours, let alone a trip. Some people don’t even take trips once they are on oxygen. The magnitude of tanks that might be needed can be overwhelming and even hard to get from the oxygen company.
My POC has two battery sizes. If I’m just sitting, the smaller battery will last around 4 hours and the larger one around 8. When I’m working out or doing races the small one last about 2 hours and the larger one around 4. When I do the New York Marathon on November 5 I’ll have to change my double battery part way through.
I also require three different chargers when traveling. The one that plugs directly into the concentrator and will charge whatever battery is attached, the one that charges a battery not connected to the concentrator, and the car charger so I can keep the battery charged on long drives. It takes a while for the batteries to charge, which means I am typically charging two at night. If I’m out all day then I’ve used at least two batteries. I can charge the one attached to the POC while I’m sleeping and using it.
- How can anyone sleep through this?
The first time I slept with oxygen I was surprised by all the noise and the lights. I use a POC. With my head against the pillow I could hear the intake of air every time I inhaled (my system is pulse, which releases air when it detects an inhalation). Plus the machine itself makes a loud clicking noise every 20 seconds or so. And that’s on top of the machine’s motor’s continuous hum.
And then there’s the lights. There’s a rather bright green light on the adapter part of the cord that’s plugged into the wall. The machine has to be plugged in because the battery won’t last the whole time while sleeping. There’s also a green light on the display panel that lights up every time it detects my breath.
The other issue is getting wrapped up in the hose. I wonder if anyone has strangled themselves (or come close). I find I have to tighten the tubing under my neck so the cannula stays in my nose. Lying on the pillow makes it harder to stay in place. Then when I roll over, I have to make sure I’m not wrapping myself in the hose or laying on it in such a way that it pinches off the flow of air.
- Trusting your life to a machine.
It’s scary to rely on a machine to breathe. It’s important to have a backup. If you lose power the home system won’t work. If there’s a problem with the tank regulator one might not get the oxygen they need. And of course, what if there’s a mechanical failure?
On my recent trip to Scotland I had two double batteries and regular battery. One night while sleeping the POC stopped detecting my breath. I’m not sure if the cannula was dislodged or it was a problem with the machine. I woke up because I was having air blown up my nose that didn’t coincide with my breath. The machine does this after a while when it doesn’t detect inhalation. I adjusted the hose and took some deep breaths, but it still kept blowing air when it felt like it. I started panicking – slightly. This was the second time the POC had done this. I tried what I did previously, but that didn’t work. I turned the unit off and just slept without the oxygen since the pulse oximeter showed my oxygen levels were OK. In the morning I tried taking the battery off and putting it back in and this reset the machine.
It was scary to think that I might be stuck for several days with no oxygen and not have any on the 7 hour flight home. Luckily, it was just a temporary hiccup.
- Lines on my face.
Every morning I wake up with indentations from the tubing across my cheeks. My cheeks are also a little irritated from having the tubing rubbing against them so much.
- Shower challenges.
The first time I took a shower with my oxygen I was in Colorado. I had to wear my oxygen 24/7 because of the altitude. I wasn’t sure how to shower with the POC. I figured water would run down the tubing and I wanted to make sure it didn’t get into the POC. I put the POC on the toilet lid since it was next to the shower and ran the tubing a little lower so any water would just collect and fall on the floor.
It got me thinking that most people shower with a home unit, which is plugged in and running. Now the home unit is probably not in the bathroom, and the longer tubing makes it pretty unlikely that water will reach the unit. It did make me wonder though if anyone has been electrocuted because of their oxygen.
There’s also the tripping hazard of the tubing. I had to make sure it was long enough so I could reach the water, but not so long that I could step on it.
- You may need oxygen when flying.
Even though someone may not need oxygen on a daily basis, there is the possibility that they need it when flying. I was surprised when someone first mentioned this to me. On my next trip to California I checked my oxygen levels and they were in the upper 80’s. My husband’s levels were a little lower too, but since his lungs are OK and his pulse oximeter reading was 95 instead of 98. This explained why every time we go to California I land with a headache. I haven’t had a headache since I started wearing oxygen on the plane.
You can’t take a tank on the plane though. And if you use the airline’s oxygen it is expensive. Some oxygen companies will give their customers a POC for traveling only.
Yet unless you are approved for everyday supplemental oxygen, you won’t get insurance coverage just for a plane ride.
- Wearing oxygen doesn’t give us any advantages.
On a plane ride home with my friend Leslie after a Disneyland race we got to talking to the guy sitting next to us. He asked if the oxygen gave me any advantages. No. It does not. I am not winning any races because I have the advantage of carrying 6-8 extra pounds that blows oxygen up my nose. It doesn’t even level the playing field. All it does is allow me to move a little faster than I can without it, and recover faster when I stop.
Those of us on oxygen wear it because it helps us do every day things. We don’t gain any advantage from it. I just allows us to some of what everyone else takes for granted. Without it some of us would not be able to leave our homes or even our beds.
I hope this gives you a better idea of what it is like to be on supplemental oxygen, or even the hoops some people have to go through just to qualify for it. We all enjoy our freedom of movement and don’t give it a second thought, until that freedom is limited.
One Comment Add yours
I just discovered your blog. You are giving me hope that I can stay active and that it is ok to walk the neighborhood with oxygen and not hide. Thank you and good luck!