PF Patient Fights for Liquid Oxygen

Great demonstration about the liquid O2.

very informative Kim - it is good to understand what may come up in the future. My husband is not on oxygen at the present time. But there are times when I believe he could use it - especially when he is active.

Thank you Kim. very helpful demonstration.

Thank you, Kim. I just stumbled on this tonight. Very helpful video.

I have been on oxygen for a little over 1 year. I had a home concentrator and tanks with requirement of 2 Ltr./ min. In March of this year I moved to St Cloud,Mn area and needed to transfer my prescriptions to new supplier. The Pulmonologist scheduled tests to determine need. Results were 2 at rest and 8 with activity. She specified on prescription a home concentrator with up to 10 ltr continuous and liquid oxygen for mobility/activity. Have only been able to get 2 liquid portables so far plus the large home reservoir. They work very well.

I heard Medicare doesnt cover liquid 02 anymore at all

I agree with you that liquid oxygen is better. I have been on oxygen for 5 years and last month my suppliers respitory tech suggested liquid and they were there the next day to install everything. I use 4 litres at rest but if I get up and walk or do anything that requires effort, get out of breath very easily, so the told me to keep a stroller nearby and just turn it up to,15 litres which really helps. The supplier is very good and their respitory tech visits monthly to check. They change all the hoses weekly. The nicest part is I live in Canada so everything is free. I would recommend liquid to anyone who needs large amounts of oxygen. I agree with you that it helps in cooling the nose compared to the gas.

The VA has provided it for me. No problems.

Great Trailblazing Work Kim.

Right now I'm just trying to get some tanks that aren't as tall to ease in transportation. They make them. They are on the market. Still they won't make them available. Just like they won't make remotes for home concentrators.

Thanks for sharing! I have been using liquid oxygen when I go out for 13 years. ( I use the concentrator in the house). None of my equipment looks like yours. (I think mine is old) I have never seen the ones you used when you go out. I have had an M6 in the back seat of my car for weekends away only. (I had to borrow it) I am glad you showed how you hooked up your tanks to equal 7 liters. I have been using the Helios Marathon. I have to beg my oxygen company to let me have some D tanks as a back-up. I am only allowed one at a time. I am not happy with my oxygen company at all. It seems as if they don't want me to have oxygen.

Very imformative, I always wondered about how liquid worked, I was offered it a decade ago but was only on 2-3 LPM so I went w/ the compressed air tanks. Now that I'm at 5 LPM on exertion I probably should have gone w/ it. However in asking about it is not available here on the Oregon Coast. I may have to move to get it if I continue to require more. One thing I wanted to mention is if you use the swivel connectors make sure to have extra on hand. In the ten years I've been on oxygen I have had two fail and come apart. I personally like a straight connection. Thank you again for your video....breathe easy and blow out deep.

I have been fortunate enough to have liquid oxygen but am sometimes having to get more than 6 only on bad allergy days. It is interesting to see that you can use both but didn't quite understand how to connect both to one.

I really look forward to you comments each week. This was very helpful. I did not have trouble getting it when I went on oxygen, they delivered both kinds by mistake.

So I tried it but it scared the graphics out of me because they had just filled it and I guess I didn't get it on correctly and it malfunctioned and all the oxygen escaped into my room. They told me to get a wooden spoon and poke in there to free up the ice crystals. I couldn't see any thing except steam from the dry ice. I CALLED THEM AND SAID IT SCARED ME( as I was new to any kind of oxy) TO COME AND GET IT. I CALLED MINE R2D2! So I'm back with the bullet kind and hose around house. To work in yard I take a bullet and a25ft cord - just lay it down and work as far as I can. But I did just buy an inogen 3 to travel and to Doctors.

My husband is on liquid oxygen because he's on a constant 6 - we just went though the hassle of finding a new supplier - he was given a 2 months notice to find another supplier because the company he was getting oxygen from refused to supply it any more. The only place he could get it is over 50 miles away so they deliver 4 tanks every 2 weeks for him to fill his portable from and the rest of the time he has to used the concentrator. He's been on oxygen over 7 years now and this is the third battle we've gone through!!!!! There are fewer and fewer companies willing to supply liquid.

Congrats on getting your LOX. I fought the same battle and eventually my supplier sub-contracted the task to another local supplier. These people are just great. It took me 6 months and 2 different pulmonologists sending Rxs to the supplier.

My understanding is that hidden in Obamacare which hugely expanded Medicaid, are reductions to Medicare. These reductions include reduced reimbursements to suppliers of equipment and services. The problem was compounded by competitive bidding - which sounds good - that makes supplying LOX to Medicare recipients, a losing proposition.

Some suppliers will go to extraordinary lengths to deny LOX. I talked directly to Medicare about the problem and a rep called a local supplier with me patched in to the call. The supplier simply lied saying that there was no liquid oxygen manufacturer who could supply it. Only that day 3 different local manufacturers told me that supply was no problem but they cannot supply it directly to the patient.

Perhaps if we all contacted our Congressional representatives about the problem we might get something done.

You can see many of the portables available here: http://www.chartindustries.com/Respiratory-Healthcare/Liquid-Oxygen-Systems/Portables/Helios-Portables

You can often find "Marathon" portables on E-Bay at about $200. This will supply up to 6L/min and also demand at up to 3L/min.

I do not agree with Kim that any portable machine (POC) will supply 6L/ min either continuous or pulse. I'll explain in another post.

Hello,
I am Lola from NC. I was on O2 for over 20 yrs. I had a bilateral lung transplant 12/19/2016. I also had a terrible time getting liquid O2. I struggled up to the very end...I was so glad to return their(Lincare's) delapitated, unkept equipment. I fought to get three portable tanks because I was in 8 liters at rest and up to 30 liters to walk. I would fill all three-use one up(it would freeze), use second one(while the first thawed so it could be refilled), then use the third(by that time-under 2 hrs the first portable would be thawed and able to refill). Lincare didn't seem to care! I actually picked up one portable from a yard sale. It was literally an act of congress to get them serviced. The portables were hardly ever accurate. The reservoirs were junky-with no gauges. I was lucky enough to get a concentrator that went up to 10. What a fight just to breathe! I truly feel that I was one of the few people who lived long enough to require that much O2. They were just waiting for me to die. Having Medicare and the whole "competitive billing" crap was not a plus for my situation either.

I sometimes think that some portable oxygen concentrator (POC) salesmen cut their teeth as used car salesmen. The internet is your friend. You can find operating manuals and sometimes repair manuals for free.

The most constant canard is that pulse settings correspond to liters/min. Some manufacturers are absolutely up front about the meaning of their pulse settings. E.g. the Oxlife Independence gives the exact amount of oxygen in each pulse at each setting (Sequal does the same). Setting 2 gives 32 mL per pulse and setting 6 gives 96mL. So if you breathed 20 times in a minute (pretty fast) at 6, you would get 1920mL in a min. i.e very nearly 2L (2000ml) NOT 6L. Some makers just say that a setting is a setting never saying what it means.

YOU HAVE TO USE YOUR COMMONSENSE. There are POCs that supply 3L/min constant flow. They are pretty big machines. When you add in the weight of the batteries they weigh about 18+ lbs. So how can a machine weighing a quarter of that supply 6L/min? Answer: They can't.

So unless you want to end up with a very expensive doorstop or worse, a serious heart condition be sure you can safely use your machine.

If a salesman says that each setting equals 1 liter, ask him to put it in writing.

You can sometimes get a 30 day trial but please educate yourself before you shell out thousands of dollars. Remember: buyer beware.

Yes I to know the trouble it is to get liquid oxygen although I try to get it so I can still enjoy camping off grid. It seems like they don't care if you continue doing what you like or not. For what we pay for insurance and what oxygen cost we should get what we want. We didn't ask to have to be on oxygen to continue living. Thanks for your article.

Here is a super presentation on oxygen from the Pulmonary Fibrosis Foundation, a non profit for people with ipf.

http://www.pulmonaryfibrosis.org/life-with-pf/pff-educational-resources/webinars/oxygen-equipment-overview/oxygen-equipment-overview-presentation

I also just stumbled on to your post. Very helpful info. I'll look for you every week. Thank you

kim did not say whether liquid 02 delivered pulse or continuous flow??there is a big difference.

Thank you for the article. My best friend for over 30 years just passed from PF. She was diagnosed 5 years ago. Hers was from an allergic reaction to her work place. Sick building.
Her biggest fight was with her air carrier. And the air industry as a whole. In this day and technology age why are the concentrators still manual!!! If someone can open their garage door from across the country via their phone... why oh why can't the concentrators do the same! If you need to move.. whip out the phone up the air to load up the body and move... as they are now you move... stats go down walk to the concentrators up the lpm to move... your in a deficiency from the get go.
At the end my friend was on 4 10 lpm. 2 y'd 2 y'd. 2 canulla in her nose. On bad days we y'd together M60 tanks with 15 lpm each. Yup that's a lot of air up the nose! She was a fighter. When the air provider said they couldn't get her higher flow tank regulators.... she went on Amazon and found/purchased them . When they said they couldn't provide high flow conectors... Amazon had them. Just let me say I'm not pushing that surch engine... the equipment is out there. Be your own advocate. Fight for every breath. Don't take their "no" as gospel!!!
She Was a candidate for a lung transplant. Her only barrier was her weight. It was hard for her to do being on 40 mg of prednisone and 40 lpm of O2. Seattle lung center wants the perfect patient. Not on O2 and perfect weight. Their Doctors words. Stanford lung center takes the "higher" risk patient. Their Doctors words.
So be your own advocate. Fight for every breath. Never take no as the final answer.... from anyone!

I'm working on it. Will have something for everyone's review in a couple of days.

I was diagnosed with IPF in May 2005 and given 2 years to live. Well, I'm still here, though very limited. I am on 5 Lpm but it's really not enough. I'm 75 and living alone and always convinced myself that my concentrator and portable tanks would simply stay permanent until I passed. To see your video, It really frightened my to death seeing what may be in my future. I don't go to a pulmonary doctor and my trusted DM here in Merced understands me and just checks my vitals once or twice a year. I am so scared that things won't remain the same until I pass.

OK here is a start to my proposed letter. Feel free to critique it. Kim is after-all a pro, I'm am an engineer and you knw how badly they write.

Dear Senator
My radio and TV are running expensive ads asking that Medicaid be expanded. I am writing for those forgotten people who pay premiums every month and who contributed their entire working lives to Medicare. Because of cuts to durable medical equipment suppliers, some essential services are either very difficult, or impossible to get.
People with lung disease often need more oxygen than portable machines or portable gas cylinders can supply, so that they can lead a semblance of normal lives. The solution to this problem is simple: Liquid oxygen often known as LOX. Because of Medicare cuts suppliers are very reluctant to supply it. Even when suppliers go to heroic lengths to obtain it, we know that if we survive the contract length, the next supplier may deny it regardless of the doctor’s Rx.
Competitive bidding has made the problem worse as suppliers naturally want to supply equipment and services that they can make a return on. I certainly don’t blame them for this as I don’t want suppliers going out of business. However I do not believe the low bidder should be able to pick and choose what he supplies; it should be all or nothing.

Here is a bulletin from the Pulmonary Fibrosis Foundation about healthcare. I'm not sure if they are correct but they may be.

http://campaign.r20.constantcontact.com/render?m=1103849957037&ca=8fc28777-6341-4ff9-a07c-7283847f09a1

It is very helpful. Thanks very much for both of you!