How much oxygen do you use?

I have IPF/UIP. I have been on oygen now for about 3 years. I went from needing 2 liters on exertion to now 5 liters on exertion. I am interested to know how many liters other IPF patients are using and how long they have been on oxygen.

Report post

67 replies. Join the discussion

Great topic. . . which I've read with interest.
I'm now 83 and have been diagnosed (after a biopsy) for three years. I've had it for two or three years before that. I have been steady with 2l for most of that time. I used O2 at night and occasionly during the day, particularly when out. When driving, I didn't use it at all. Over the last six months, it has progressed rapidly, and I'm still on 2 l at night. During the day, in the chair, it's at 2 also. With very little exercise (like walking up 9 steps of stairs), my SATs can get down into the mid-50's (with a great deal of worrisome discomfort). I turn up my O2 to 6l (the highest my concentrator will go), and my SATs will still go down into the high 60's. Recovery is fairly fast.
I also have vertigo.

Report post

Diagnosed with IPF 4 years ago, dry cough and SOB. Put on 02 with exercise only 2 l. Still on 2 L, none at night. At Simmons Center, if O2 is below 90 you are put on oxygen to protect your other organs.

Report post

Nivlag1 ~ Give the Coalition for Pulmonary Fibrosis a call. They may be able to suggest something. I have called them and they are very friendly and have lots of resources.
http://www.coalitionforpf.org/

You might try the Pulmonary Fibrosis Foundations also. I have never talked with them but it is a huge organization and they should have resources that can help you find a qualified doctor or center of excellence that takes your insurance.
http://www.pulmonaryfibrosis.org/

Hope this helps. have a good day.
~ Judi

Report post

I was diagnosed in 2010 with IPF--I needed 02 from the beginning, starting with 2L at rest and sleeping and 5 L with exertion. This past summer of 2012 I had pneumonia which required my oxygen requirements to be increased to 6L with exertion. My current concentrator will supply 10L and my portable tanks (liquid) supplies up to 15L. When I sleep or relax, I still need 2L.

I did not pick the first pulmonary dr because I was treated in the emergency room. He did not have a lot of experience--approximately five years. I did not care for his cocky attitude among other things and I switched to another more experienced doctor with over 25 years experience. I am very comfortable with this doctor because he is very encouraging and compassionate. As patients we have the right to change doctors if we feel that we are not getting the best care, information, or advice.

BE ENCOURAGED AS YOU MOVE FORWARD. MAY THE LORD BLESS AND KEEP YOU.

Report post

Benjo2,
the way I was told to use it was to turn the concentrator up full on its own reg v v and regulate what you need on your cannula reg v v. that way you are not interfering with the reg vv on the concentrator and the machine only works on what is req by the cannula vv. Being an engineer myself that makes sense to me, it is not interfering with the working of the concentrator, you only use what you req.
My machine works to 5ltrs and I can control it from the cannula vv down to 0.5ltrs and the machine works great and has done for the past 6 months with no problems.

Report post

This is the reason I chose to go with the traditional Medicare rather than an advantage program. One suggestion I have is to call the business manager of the pulmonologist you want to see where you live and explain your situation. Ask if you paid out of pocket if they would reduce the charge to what medicare would pay for the office visit. This may last you until you can change to traditional medicare in the future if you desire to do so. I have heard of some physicians willing to work with patients this way but have no personal experience with it. Hope this helps and good luck!

Report post

Well I found a doc who will see me but only as a consult right now. That is ok. I just want to get into someone who knows IPF and then he will recommend a dr with experience.
How does traditional medicare work? You have to pay 20% of the fee? Financially things have been very bad for us since I had to stop working. We are barely hanging on by our fingernails which is why the advantage plans with a$40 copay was so inviting. I never thought it would not be accepted. I worked in benefits in my early career and United Healthcare was a wonderful health plan. I guess times have changed. I did try to pay out of pocket to see the original dr but they said they are not allowed to do that. Nothing I said would budge them.

Report post

I am a new member --I read your response to a post and I was very impressed and encouraged by your positive attitude about your condition. I am sure that you praise God constantly for bringing you back to a point where you boldly testify to His goodness. It is truly a miracle that I survived in the ICU; I have no doubt that The Lord covered me with His wings while I lay in ICU for 8 days sedated, intubated, etc. I went to the ER and eight days later woke up in the ICU. I left the hospital on oxygen , and I require it constantly.

Reading your testimony was a joy. It is such a pleasure to hear someone else bless others with such a POWERFUL testimony. My life is very different now, however, I am blessed to have everything I need.

Report post

Drummer5543, I am curious as to what you are using for your O2??
At the moment I have a concentrator and use 2L at rest and sleeping. My 6 Minute Walk was indicative of me needing much more with exercise. Probably 4-6L during any exertion. My portable tanks only go to 2L cont. or 5L Pulse, which does nothing for me. I think I need to go to using E tanks! Is this what you are using? Or D tanks ??

Report post

Breathless 47,
I use the Helios Marathon Liquid filled portable concentrtor, it goes up to 15 lpm. I us 8-10 with exertion and 2-3 while sitting, I can get about 3-4 hrs without alot of exertion. When I do my grocery shopping( 30-45 min), I am set at 8 lpm and use half a tank. Hope this helps.
Duka

Report post

Dear Duka,

Where can I get this machine and how much is the cost of this machine.

My Father is now at 4 LMP and he is not able to be without oxygen for few minutes also.
The oxygen level drops to 70 and below and it is big cause of concern for us now.

Please let me know if there is any way to give him a better life.

Report post

Breathless_47

What is this Continuous and Pulse Oxygen machine.

Please let me know the difference. We have just started using MEDOXY Oxygen Concentrator which is 5 LPM.

MY Father is at 4 pressure while using oxygen from Oxygen Cylinders but I need to know what should be the equalent for Oxygen Machine.

Further he is getting weak and weak day by day. A Month back he was able to be without oxygen for 8 to 10 hrs with lil breathless ness but now he cannot stay without oxygen for 5 minutes also. This is a concern and we are trying to find out a way to give him better life.

please help and suggest what best can be done

Report post

Pulse is a system that only delivers oxygen when one inhales. I found it useless!
Continuous is just that, oxygen is delivered continuously.
Most concentrators will deliver up to 6L! You need to check with your Pulmonologist or Primary Care Doctor and have them coordinate with your oxygen supplier. Your oxygen supplier knows the equipment and can set you up according to what the Dr. orders.
I hope this helps.

Bunny

Report post

The MEDOXY Oxygen Concentrator is a stationary unit used for home. The portable units mentioned are either gas tanks or liquid 02 concentrators meant for periods outside the home. The Helios marathon is the only liquid portable which has both pulse and continuous flow...pulse meaning everytime you take a breath, you get a "wiff" of 02. This and most portable liquid units only go up to 6L. I have a Caire POC which goes up to 15 but is continuous flow only. The Companion 10 is also a high (15) unit but also only continuous. I use 3 lpm either pulse or continous while sitting and do fine but whith virtually any movement I need much more and usually use 8-10 lpm. The home units come in two sizes, 5 lpm and 10 lpm. I have the 10. Your pulmo MD should order this for you through your 02 supplier. Can't answer about costs...it depends on insurance, etc.
Hope this helps.

Report post

To breathless_47
I have a Platinum 10 concentrator that goes to 10lpm. I buy my cannulas from softhose.com and portable regulators on the cannulas with a litre flow of 3-10 litres which I can adjust without going to the concentrator to adjust litre flow. I also use E tanks if I leave the house with a regulator that goes from zero to 15 litres. I am on 3-5 litres at rest and 10-25 active. I use 25lpm when I walk to the living room in the morning until I get my breath back which takes about 5 minutes and then 3-10 litres during the day.

Report post

My Marathon is continuous only and goes up to 15 lpms

Report post

I'm a 53 year old Female diagnosed in July 2011 with IPF. Immediately put on O2 24/7 starting at 3L rest, 4-5 as needed with exertion. I am currently in the hospital. Admitted Saturday for SOB, weakness, O2 levels never got above 83 for a good 48 hours straight. Found I had an infection and fluid buildup in the lungs. Chest X-ray and CTScan so bad they can't tell where fibrosis ends and infection/pneumonia begins. Put me on a wonderful 50psi O2 machine with built in heat and humidification. Started out set at 80% O2, now set at 63% with my sats holding in the low to mid 90's. unfortunately this type of O2 machine is not made for home use. I was on 6L steady at complete rest and no amount of turning it up helped with exertion. Just standing and taking 2-3 steps dropped into the 50's. happened over and over again throughout the day. Couldn't go on that way. Hope to be sent home with a more comfortable and safer method. Keep fingers crossed! Thanks for listening.
Deb

Report post

I agree with your regime. Pretty much the same as I am using. After coming to the higher flow rates without counseling takes too long. SOBers should understand the benefits of higher flow rates. I love my 25 l/m regulator on an E tank as I can play a few racks of pool, a lifelong passion. Have to change tank every half hour, but my pal is younger and healthy and willing to do anything to help me get out.

Report post

Where do you get a regulator that goes to 25lpm?
Mine go to 15lpm.

Report post

0-25 LPM oxygen regulator available from emedMedline.com
Part Number HCS8725M $22.79 but they tax you up for the freight - $9.95
Still get short of breath and tired, but I can keep moving. Morphine helps stay active too without dyspnea. If I didn't have the high flow oxygen and meds I couldn't play pool any more, or walk around the beautiful spring woods, wife/aide/pal dragging my double E cart along with us.
I take the control rotator off and remove the stop pin so I can take it from 0 to 25 with one click backwards.

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support the Pulmonary Fibrosis Foundation

Help the Pulmonary Fibrosis Foundation reach its goals and support people like yourself by making a donation today.

Donate to the Pulmonary Fibrosis Foundation

Discussion topics

Pulmonary Fibrosis Awareness Day

Pulmonary Fibrosis Awareness Day

PFF Summit 2015

PFF Summit 2015

PFF Care Center Network

Links and Resources from the PFF

Community leaders

Disclaimer

The Pulmonary Fibrosis Foundation (PFF) would like to remind visitors and group members that information found in the PFF Support Community should not be considered a replacement for a consultation with a qualified healthcare professional. Please consult your personal physician regarding any medical information that is shared on this site. Any views or opinions expressed on this site are not necessarily those of the PFF.