Hello and I would like to say that I am on 5 litters per minute,on a c tank, but earlier I the year my doctors switched me over to the continuous machine,but it was giving me major issues. It was running hot a lot and even shutting down on a full battery, so he switched me back to the c tanks and I have a lot of weekly appointments and I agree they are a pain to carry back and fourth. I like the tanks better though, although I have to take extras, because sometimes the oxygen tanks are delivered empty due to Lazy workers. Hopefully I'll be getting on the transplant list because I am in need of a double Lung transplant I am 46 years old and praying for a cure as well. Thanks for sharing.

Thank you so much for sharing this information. My husband has IPF and every bit of information we can get helps. Bless you and keep in touch.

Also I wish you the best

Great video for all they are new to the PF world. I would like to know how you "fought like a dog" to get the oxygen. My BC/BS thinks it is a luxury to have a portable anything and is always denied.

My wife and enjoy traveling, especially on cruise ships. I am on 2L of O2. I get my O2 from the VA. they provide me with tanks and it is difficult traveling with tanks. The provided me with a rental unit concentrator which worked great but was huge and very difficult for traveling. On planes they do nt allow you to run the portable units in flight without special arrangements. the portable was a royal pain because it was large and i had to take it apart to fit into the overhead bin and then put it back together when leaving the plane. I decided to buy my own unit. I bought a small unit that would do pulse and continuous O2. It also has a setting for over night supply. It is made by Respironics and its the Simply Go model. I really like this much better, it will work off home electric, car power and battery. It is small compared to the other one and much easier to move around. There are a lot of portable concentrators on the market and you need to make sure that if you buy one, it needs to meet today's needs but also has the capacity for future requirements.

Kim! Thank you so much for this information. I had noticed that my pulmonary rehab sessions were so much more comfortable than my walks around the neighborhood, but none of the rehab folks were able to explain the differences between oxygen delivery systems. This helps so much. I am going to find out if my insurance will cover a continuous-flow portable oxygen generator and then ask my doctor to prescribe it for me. I can't thank you enough. I'll let you know what happens. . .
Ellen

Thank you for sharing this info. This was extremely belpful and informative.

Hi I live in U.K.
I'm on 12 litres of oxygen when mobile.
I have 3 portable liquid oxygen units to take out.
This is the maximum allowed by NHS.
Each one lasts approximately 1 hour 20 minutes.
I drive and find I need at least 2 litres as I get breathless.
Can't spend a full day out now which is very disappointing.
We have to pick and choose what we do.
It is very important that I keep as fit as possible as
I am on lung transplant list for double or single lung transplantation as I am 57 years old.
I was diagnosed at 52 years with Idiopathic Pulmonary Fibrosis.
I have had numerous problems getting my liquid oxygen sorted for holidays in the Uk.
The suppliers vary to different areas and they all have different rules to how and where the big units (dewars) I fill my portable units from are stored.
Some say inside some say outside some that they should be stored in a locked shed!
When you are renting a holiday property this causes big problems.
To top it all what ever we decide by phone with the company can go out of the window once the Engineer arrives to bring them as they have their own ideas!
How they make life so difficult when we holiday !
Wish all companies had the same guidelines so at least we would know exactly where we stand.
How difficult should this be!!

Good morning Kim. I was diagnosed with IPF about 2 1/2 years ago, and so far I am not very bad. I do use 2 lpm most of the time, but not all the time. My O2 stats can drop well below 89% – as low as the 70s or low 80s – when I exercise without oxygen; so I pick it up to 3 lpm when I exercise.
I just learned about your column, so I don’t know what you have talked about in the past, but I can pass on a couple of interesting thing I have noticed in my progression of the disease. First, apparently my body (over how many years I don’t know since I don’t know how long I have had the problem before it was diagnosed) has adjusted to the low oxygen levels I have been getting such that I don’t feel any physically differences except that my heart rate goes up. God created an amazing instrument when He created the human body!
Secondly, for me altitude makes a very large difference. My O2 stats where I live (in Wawona, inside the southern part of Yosemite National Park) are significantly lower than they are at sea level: At home at roughly 4,000 feet my stats run in the low 90s when i’m at rest, and drop like a rock when I exercise without O2. But at sea level they run in the high 90s, and although they do drop when I exercise at sea level, it is not nearly as severely as at altitude. So altitude makes a major difference to me.
Thirdly, I’m sure you must have commented about the two new medications that became available in this Country (USA), I believe in November of 2014. The following has been my experience with one of these new meds that may help some other people in the future. I started taking Esbriet (perfinidone) in July of 2015. They recommended that you start at 3 pill a day and add an additional 3 pills approximately every week until you reach the recommended therapeutic dosage in less than a month of 9 pills a day (around 2,600 mgs). I did that, an although there can be a host of side effects with this medication, I did fine for 3 or 4 months, until all of a sudden a number of those side effects hit me all at once and I had to stop the meds completely. After a couple of month my pulmonologist, Timothy Evens, suggested that I try the medication again. As I pondered this over in my mind for a while, I mentioned the problem to an Nurse Practitioner friend of mine, and she recommended that I start again, but this time at a much slower pace than before to allow time for my body to adjust to the meds. So I started again February 1 of 2016, this time at 1 pill a day, increasing at 1 pill approximately every 6 days until I again reached the therapeutic dosage of 9 pills. And that worked for me; I have not had no further major reactions to the drug. However, I have found that I need to take probiotics every day to keep my stomach happy.
Incidentally, as many have commented about, I also had a little trouble getting the oxygen started. I am 76 and on medicare. My suppler, Lincare, is excellent. They helped me get started, and since Lincare is nation wide, when I flew up to Seattle the have an office that can help me there - although I have little trouble at this time at sea level conditions.
Forrest

I have been on oxygen for a little over a year. I found out almost by accident from my Pulmonologist about Oxy-glasses. They are fantastic! They eliminate the tubing on your face. The oxygen is sent through the frame to a canula that goes into your nose. Unless people look closely it's hardly noticeable. I got my frames from Oxyview and then found an optometrist to do the prescription lenses. They come with clear lenses so if you don't need prescription lenses you're all set! I would highly recommend them to anyone! I really can't say enough good things about them.

Thanks for the info on all the portable oxygen tanks as my hubby will probably have to use a higher liter soon with his ipf. This was diagnosed only doing 6 minute walk and. Ct scan. His lung dr really didn't encourage him to pursue the new meds, just said it was so expensive and costed thousands of dollars. Do you take any meds wth your pf? Thanks.

Good info., Kim...thank you!
But with liquid O2 (LOX) becoming ever harder to get it's a wonder that you are able to so easily get refills for both large and the smaller bulk tanks. Do you go to them for the small tank or do they come to you?

Also, the portable stroller units you have seem to be a much improved version (Inovage?) over what we have here in Denver from Apria...ours fail almost monthly (the gauge/fill indicator) and I'm told are not repaired...not even for a simple button battery change! And that carrier/dolly cart is also a nice size...can you tell where you got it?

Lastly, thanks for the heads-up about the portable cylinder "bombs"! One would think there would be a protective "shock collar" or something on them to keep the regulator valve from being damaged since most people just lay them on the back seat or stand them up with nothing more than a seat belt holding them. Again, Apria never told us they were that vulnerable.

Live in US, mom is currently using 5 liters, continuous flow, during day and 6 liters at night. The bulky D and E tanks are difficult to transport. is this liquid oxygen device available in US? What are the cons? How is it supplied? Thanks
I apologize-included incorrect email in first comment/question

Thank you soooo much for the helpful information. I'm on 10 liters and am searching to see whats next for me so I can keep breathing and going places. I ask my oxygen co and they don't do the liquid, so I'm on the hunt now. I will ask my pulmonary doc today so lets see where that goes. thanks again. I'm ready for the battle for the liquid thanks for heads up.

Thanks Kim for all the great information about portable LOX. I'm currently on 8lpm and can't use my Inogen One G2 POC anymore. So I have a couple of questions.
1. Have you tried an Oxymizer cannula with the portable LOC? I get almost 3.5 hours from the D tank and wondering whether comparable time can be expexted if the oxymizer is used with the LOX cannister.
2. Is there much difference in weight between the LOX cannister and the Inogen 2? I used to hang my POC off the front of my walker in a backpack. Wondering if I could do the same with the LOC cannister.
Thanks

I need 6 continuas liter of oxygen I need a portable small machine. Any ideas

Hi
Im using 8 lpm continous, away from home Im using 3 lpm
on poc and for 5 lpm use cylinders. The problem is, cylender finish within one hr if I use 5 lpm .
Im looking for solution, can you advi se me .
I live in TORONTO where traffic too much So it always risky for me to go out .
PLEASE advise.
thank u.

Hello Kim, I am searching for a way to get my cousin from Colorado to California for a visit. He went to his lung doctor and was told he would need lpm6 to fly. He uses the tanks at home. He needs ppm 5 oxygen all the time and going out is really hard for him. He has to get a shuttle or ride the bus for all of his errands. I ran across your video looking for information for him. He has been told he is not compatible with the tank that makes its own oxygen. I want so much to help him come for a visit. Thank you so much for sharing with us.

Be aware that none of the portable concentrators work at ambient temperatures below 41 degrees F. That information is well hidden in most of the company specs.

I need one of these I live in Columbus Ohio I have oxygen tanks I would like to try one if I can I have Medicaid insurance I have kids I would like to go outside to play with my daughter I can not work anymore.

I am a neck breather and have been told I can not use a portable oxygen concentrator because I don't breath through my nose. I would like to know what difference, besides the mask vs nasal cannula, it makes. I take in and breath out air, just through a stoma instead of my nose or mouth.