My mom has had emphysema and COPD for about thirty years. Yes, she was a smoker (quit as soon as she got the disease) and she worked in factories without the proper ventilation systems. (She stained TV cabinets without a mask and worked in clothing factories breathing in fibers.) Over the years, we’ve adapted to her new “normal” and it’s not always been easy. One of the most difficult things is educating others.
That’s what I want to do today.
My mom uses compressed oxygen on a daily basis. Initially, she used oxygen only to help her sleep. When she would lie down her breathing would become constricted and prescription oxygen was needed. Yes, prescription. Now she uses it constantly – all day long – to help her breathe.
You see – most of us take oxygen for granted. For those of us without disease, we breathe in and out all day without much thought. But for her, and other COPD sufferers, it is a medicine that must be taken in. Her doctor prescribes oxygen for her. When we go to the doctor’s office and they go over her list of medicines – oxygen is one of them. It’s not a given – it’s medicine.
My mom is on three litres of oxygen for normal activity and four (or more) for exertion. This is like saying, “I take one Ambien at night to sleep.” To help you understand this amount, on her current oxygen portable tank the level can go up to 6 litres. When ill, she sometimes is on five.
Lack of oxygen can cause a boatload of health issues to a body. Your cells can stop working correctly without the right amount of oxygen, causing hypothermia (seen as blue lips and nails), changes in levels of consciousness, and even organ dysfunctions (including heart attacks). In addition, because her lungs do not work properly, even with the added oxygen, she cannot move quickly and cannot carry heavy objects. Walking at the pace of a healthy individual does not happen in her life – everything is slowed down. Any exertion causes her lungs distress – hence the oxygen to help.
Now here is the worst part. My mom is using liquid oxygen. This form makes it easy to carry tanks and for her to be mobile. Liquid oxygen is lighter than compressed oxygen and the tanks last much longer than compressed oxygen tanks, making it a good choice so she can go to church, go to the grocery store and just visit friends. (One tank, when filled, can last up to about 6 hours.) This blog post gives an excellent breakdown of the different types and the pros and cons. Compressed tanks are bulkier and heavier (especially for a 72 year old with breathing problems) to carry. (One smaller tank, when filled, will only last approximately 1-2 hours.)
But there is one thing I disagree with from the post mentioned above. They say, “Choosing an oxygen system that works best for you has to be a decision you and your doctor make.”
We have recently found this to not be true.
You see, there are suppliers of oxygen – just like pharmacies. My mother has had the same supplier for many years until just recently when they told her they would no longer provide her with liquid oxygen and she MUST switch to compressed. (They’d done this once before and we fought it. Medicare even says they cannot take it away, but they somehow get away with this practice.)
(Guess why suppliers want to stop supplying? Insurance companies don’t want to pay for the increased expense of liquid oxygen.)
This time, we fought and they didn’t budge. So, she switched companies. It was a LONG and ARDUOUS process for her to switch (because even the insurance company representative told her she had to switch), causing her much stress and many sleepless nights. No one seemed to CARE that she NEEDS the liquid oxygen. Her doctor has decided it is the best for her and that is what her prescription even says, but they don’t seem to care. They are uneducated about the differences.
If companies stop supplying it due to lack of insurance support … what will happen?
She will be home bound. Immobile. Easily susceptible to sickness due to lack of movement. That’s what.
So you see… it isn’t just oxygen. It’s her life support. It’s her life. She needs it to live, just like we all do, except she can’t just take it in easily like we can. She can’t heft around large bulky metal tanks every time she needs to go to the grocery store. A church visit would require at least two tanks that she would need to haul in her car, into the church and back again. Possibly with a cart that adds weight to her load.
Lacking oxygen is hard enough. Why does she have to suffer just to breathe when it doesn’t have to be that way?
Insurance companies – educate yourselves and your people. Let’s get back to the business of CARING instead of just business. Because it’s more than “just” oxygen.