PF Patient Fights for Liquid Oxygen
About a year ago I put on my “big girl panties” and began the fight to get my oxygen provider to supply me with liquid oxygen. Up to this point, I’d been using an oxygen concentrator at home, and a portable oxygen concentrator away from home. I also had a few gas cylinders on hand in case there was a power outage.
This worked fine for me until I started needing 7 lpm (liters per minute) of supplementary oxygen, and found it much more difficult to go out and about. (I’m now using 8 lpm.) I was physically unable to carry the amount of gas cylinders I needed to go to the doctor and run errands. My portable oxygen concentrator (Inogen G2) that went to a 6 liter pulse was no longer enough for me to use when walking.
I knew liquid oxygen was recommended for patients who were considered “high flow” (6 lpm and above). I also knew that it was difficult to get approved by insurance as well as delivered by oxygen providers.
What do I mean by liquid oxygen?
This is a type of supplemental oxygen made by cooling oxygen gas and converting it to a liquid. As it warms, it evaporates back into gas to breathe. Once approved, the provider delivers large tanks of liquid oxygen to the patient’s home, which must be filled weekly or biweekly by the oxygen provider.
Liquid oxygen tanks deliver up to six liters per minute, but they can be hooked together with a Y connector to deliver 12 liters per minute with two tanks, or 18 liters per minute with three tanks. I made the video below to show you how this all works.
I prefer liquid oxygen over gas cylinders or a concentrator. Liquid oxygen is slightly cool and soothing, and is much easier on my nose, which dries out terribly with a concentrator. This is especially important as patients require higher levels of oxygen.
Portable and home use
Besides using liquid oxygen at home, patients can also use it away from home by using portable oxygen containers, or “strollers.” These portable units are filled from the large liquid oxygen tanks that are delivered to your home. Please see the video below to see how my husband, Dave, fills them for me.
The liquid oxygen portable strollers are able to hold more oxygen than the gas cylinders and weigh half as much. Having two or three of them with me when going out helps me stay independent. I also have a smaller tank in my car. My oxygen company provides me with strollers by “Caire” that delivers liquid oxygen between ½ to 15 lpm. This system will last quite a while, even as my pulmonary fibrosis worsens.
Okay, I’ve explained how using liquid oxygen has helped me as my pulmonary fibrosis has worsened, but how do you get it?
The biggest problem I have experienced using liquid oxygen is that some oxygen suppliers are reluctant to carry it, or do not offer it at all because it is very expensive for them to provide. 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.
My most recent fight involved getting a provider to authorize liquid oxygen delivered to my home. It took three months of fighting with my oxygen provider to get these tanks delivered to my house, and two more months to get two portable “strollers” delivered so I could use the liquid oxygen when out and about. I didn’t give up and kept asking to talk to the next supervisor up the chain.
They finally said yes when they realized I wasn’t going away. My exact words were: “You don’t know me, and that’s OK. What you need to know is that I will never give up. I sued the United States of America when they rear-ended me with their USPS mail truck and ruptured three of the discs in my back. It took four years, but I won that lawsuit. My next move will be to file a lawsuit against you.”
The next day I got a call and they brought the tanks to my home.
I’m glad I was successful, and using liquid oxygen has made a huge positive difference in my life. It should not be this hard to get the oxygen we need to breath!
I’ve created the video below to show you my equipment so you can see up close what the options are. I hope it is helpful to you.
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.
Please check back next week for my column about “Tips for Getting Liquid Oxygen” as well information about insurance coverage.
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? 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 Hypertension 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 Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.