Last week I shared my struggle to get my oxygen provider to bring me liquid oxygen. It took me five months, but I was finally successful. In case you missed it, last week’s column also included a video demonstrating how I have liquid oxygen set up at my home, and I also explained how I use portable tanks away from home.
I advocate for myself regularly, but I don’t get in the trenches and fight very often — only when necessary, or if an injustice has been done. Getting the supplemental oxygen I needed qualifies. There is no guarantee my tips will work, but they may help improve your chances of success.
Advocate for yourself because you’re worth it
God created you. You are precious. You deserve to get what you need. If you aren’t able to advocate for yourself, see if a family member or your doctor can advocate for you on your behalf.
Start before you desperately need it
It may take some time, so start the fight early. I began my fight before I knew I absolutely needed it. I didn’t want to start the process when I was in crisis. I was fine with a portable oxygen concentrator or gas cylinders until my oxygen needs were considered “high flow” – above 5 liters per minute. I now use 8 liters per minute.
Those denying your request have their own problems
I don’t mean this as a slam. The 10 people who denied my request had their own jobs 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. Don’t hesitate to keep asking for the next person in charge. I kept asking until I got to the vice president of the company. Tell them:
- You have a terminal lung disease
- Your need for higher levels of oxygen will only get worse
- You are physically unable to carry and transport the gas cylinders, which are dangerous to transport
- You will be unable to go to doctors appointments, pulmonary rehab and obtain your medications if you cannot leave your home
- This is a life and death matter. Liquid oxygen is not for convenience
- You will not stop until they bring the liquid oxygen
- You do not want to take legal action, but you will if needed
Don’t give up until you’ve exhausted all avenues or the fight is too costly on a personal level
My first experience trying to get oxygen prescribed was three years ago. After four weeks of effort, I was distraught trying to get oxygen delivered, all 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 portable machine ourselves. We put it on a 0 percent credit card and paid it off over time.
It is an interview of David J. Lederer, MD, the Pulmonary Fibrosis Foundation’s senior medical adviser. This interview is an hour long and talks about the different types of oxygen. It is excellent. At 48 minutes, 50 seconds he explains why liquid oxygen is so hard to obtain, and offers some tips of his own. It is worth a listen. Thanks to one of our readers, Bill, for letting me know about this resource!
One suggestion he had was to call or email the Pulmonary Fibrosis Foundation to see if they can help apply pressure to your provider or insurance company. Here is their contact info: email at firstname.lastname@example.org or call 844-TALKPFF (844-825-5733).
Even if you aren’t successful, congratulate yourself for being a proud warrior on your behalf
You may not win this particular battle, but you won a larger, more important battle by advocating and fighting for yourself. You matter, you are valuable, you count, and you are worth the effort!
Supplemental oxygen is very expensive. Most insurance plans cover this cost, but some do not. I’ve had both experiences. My first insurance carrier did not cover supplemental oxygen of any kind through their individual plans (which I had). I took them to the state insurance board, but lost. Initially, I had to buy my own equipment. I put one unit on a 0 % credit card and paid it off over time. I sold my professional library and tools from being a marriage and family therapist for 30 years to buy the other one.
Needless to say, I switched companies, and my next insurance company covered the cost. I now have Medicare, and they cover it as well. Please check directly with your insurance company about what your policy covers.
What I’ve shared is based on my own experience, and I realize I may be missing some information. I’d love to get your input on this topic! Please note that a doctor’s prescription is required for supplemental oxygen.
I’d love to hear from you! What was helpful for you about this column or video? Did you know about liquid oxygen before this column? What experience have you had trying to get liquid oxygen from your provider and/or insurance company? What tips do you have for us?
Please share this post with anyone you feel could benefit, or on social media. We’re in this together.
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.