I recently had a victory in a fight for oxygen, and wanted to share what I learned through the process.
I had to fight for oxygen … pretty basic need, right?
Like many of you, I’m on supplemental oxygen 24/7. It’s been two years, and it has been a fight from the very beginning to get various insurances and providers to pay for it. I haven’t always been victorious.
I’ve had a variety of stationary and portable oxygen concentrators, as well as portable gas tanks. I now know more about supplemental oxygen than I ever wanted to!
When our lungs are damaged and compromised, we can’t take in the amount of oxygen we need to send to the rest of our body. Not getting enough oxygen can also put a strain on your heart and other organs, including your brain, which all need oxygen to stay healthy.
It is super important to use an oximeter to measure and be aware of your oxygen levels. According to the Mayo Clinic, a healthy person will have oxygen saturation levels between 95 and 100 percent. My docs have told me to keep my levels above 93% with supplemental oxygen. Levels below 90% should be considered a medical emergency, and symptoms include a bluish coloring to the skin, rapid or difficult breathing, unexplained restlessness, or apprehension or confusion.
Fighting to make sure you have the oxygen you need is essential!
Oxygen therapy can keep your lungs healthier for longer, and can make a difference in your everyday life. It can help you stay active and independent, and be able to pursue activities that are important to you. You just feel better!
My most recent fight involved getting a provider to authorize liquid oxygen delivered to my home. It took three months of fighting and going up the chain to get these tanks delivered to my house, and two more months to get two portable “strollers” delivered to my house so I could use the liquid oxygen when out and about. That was two weeks ago.
Liquid oxygen is expensive, so I understand the reluctance to provide it. I also understand that it is better for me than the concentrators and gas oxygen I’d been using. This became even more true when I started needing 7 lpm, and my portable oxygen concentrator was no longer safe for me to use when leaving my home (it only went to 6 lpm – pulse). I advocate for myself regularly but don’t get in the trenches and fight very often …only when necessary or an injustice has been done. Getting the oxygen I need qualifies.
Having a serious illness and dealing with lots of doctors and providers has given me lots of practice advocating for myself.
Here are some general principles I’ve learned:
~ Advocate for yourself because you are worth it. God created you. You are precious. You deserve to get what you need.
~ The folks who aren’t helping you have their own problems. I don’t mean this as a slam. The 10 people who denied my request had their own job to do. I’m sure I have no idea what was going on behind the scenes. You and your needs are important, no matter what else is going on with others.
~ Be polite but firm. The first five times I was polite, and gave them time and room to respond. Their tactic was to never call me back. The next five times I was polite and firm, and told them they didn’t know me, but I would not give up on getting the liquid oxygen my doctor prescribed. I just kept asking for the next person up the ladder. Finally they said yes. Getting this liquid oxygen was so critical for me that I would have taken legal action, and I told them this. Fortunately I didn’t have to. Click here to see my final letter to the provider.
~ Don’t give up until your avenues are exhausted, or the fight is costing you too much personally. My first experience trying to get oxygen prescribed was two years ago. After four weeks of effort, I was distraught trying to get oxygen delivered while adjusting to the severity of my diagnosis. One afternoon my husband walked in, saw me sobbing on the phone and told me to hang up; we would buy the $3K machine ourselves. We put it on a 0% credit card and paid it off over time.
My individual plan (at the time) did not have oxygen on its list of “essential durable medical equipment” (even though group plans did). So even though my doctor prescribed it, the plan wouldn’t authorize it. I made a formal complaint to the board of managed care in my state, but it couldn’t make the plan pay because providing oxygen was not listed in the contract I signed. We paid for my O2 for six months, then changed plans.
~ Even if you aren’t successful, congratulate yourself for being a proud warrior on your behalf. Even if you don’t win the particular battle, you won a larger more important battle by advocating and fighting for yourself.
~ You are worth the fight
~ You are valuable
~ You deserve to get what you need
~ Your comfort and quality of life matters NOW
~ You may need to enlist help from others who can help you
I really hope this topic helps you. You may not be dealing with fighting for oxygen, but I know you may need to fight for some aspect of your care that is recommended, now or in the future. You Matter, You are Valuable, You Count, You are Worth the Effort.
I would love to get your input.
What stood out to you? What part of my story could you relate to? What has been your experience getting oxygen or other services you need? Do you have any tips to share with us?
Please leave your comments below, and share on social media or via email with others who might benefit!
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.