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.

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may i ask what is a oximizer penent is

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I was diagnosed in June 2012, my 60 ft walk put me at my "magic" number of 3 liters/pulse/24/7. When I was doing quite well a few weeks ago, I was able to get down to 2 liters.

After several setbacks, including bad asthma flares, I am up to 5 liters with sats dropping to 79or lower with exertion. This week has been horrible for me and I think I may die from asthma before the PF gets me.

My pulse ox is my guide as to how much to do and when to stop and sit and focus on breathing. I have a large concentrator that I use continuously while at home, a portable one for my out and about times and then tanks for back up in case of power outages, or low battery on my portable. I could probably open an oxygen supply shop with all of my gear!!!

Your oxygen demands may fluctuate from activity to activity and from day to day. I find that I need a boost after eating and I eat small meals. Keep on top of your sats---

MaryJo

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Promise me, please, that you will always have oxygen with you when you leave your home. It's not pretty nor fun but neither is a heart attack. You have to do what is needed to keep operating at optimum levels and low sats will cause you nothing but more grief.

I need 02 all of the time and I don't like that--but I have to deal with it. My best friend who has COPD and a serious cardiac condition due to low 02, needs her tanks once in a while. I want to avoid her complications and she doesn't want to end up like me so together we waltz around with our 02 devices and enjoy life. Oh yeah, even though we're old(70's), we still do our hair, wear makeup, dress up and go places and do things---along with our rather ugly 02 contrivances.

You matter, the things that are necessary in making you, YOU are just minor nuisances. Take your 02 with you, please=---

mjay

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An oxymizer pendant is a cannula that helps conserve oxygen. Our insurance pays for them just like any other cannula. It definitely makes the tanks of oxygen last longer and my husband uses them exclusively now (except when showering). Here's a link so you can see what I am referring to. He uses the pendant........not sure how well the mustache style works but I doubt it would be as comfortable. You do have to have an Rx from the doctor to have the insurance cover it.

http://www.chadtherapeutics.com/usa/Disposable-Conservers/Oxymizer.html

~ Judi

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I was diagnosed July 2010 but didn't require O2 until Dec 2011 after a hospital stay with pneumonia.

My O2 requirements are 2 L sleeping, 3 L awake and not moving much, 6 L moving lots and carrying things.

Recently my dr. was lowering my prednisone from 10 to 7.5 to 5mg. After a few days on 5mg my O2 needs increased to 8 L on exertion and I was SOB alot of the time with low sats and long recovery time. Needless to say he put me back on 10mg and within a day or so I was back to my previous O2 needs.

Liz

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Diagnose June 09, started oxygen April 2012 @ 3 lpm pulse. May 2012 went to 4 lpm continuous flow 24/7. August 2012 went to 6 lpm 24/7 and finally Sept 2012 6lpm rest and sleeping and 8-10 with exertion. I went to pumonary rehab Sept - Nov, 6 minutes walk my o2 was 89, when I finished rehab, my 6 min walk, my o2 was 78 lpm. Who can figured how this goes.

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Thank you all so much for your replies. I was diagnosed in 2007, needed oxygen starting in 2009. I originally needed 2 liters for exertion. Over the last 3 yrs I have noticed my needs on exertion increase to 5. I mentioned to my pulmo doc that I needed to go to a concentrator that went above 5 and he said there is no such machine. He also argued about how much oxygen people need. I think he thinks of me as a C OPD patient which is totally different. So, I just wanted to see what people who actually have IPF and truly understand it, think!!

I tried to explain to the dr that I have very bad coughing fits where I cannot breathe and my sats drop to 63. During those times I need to increase my oxygen. He told me I just "have to learn to control my cough and breathe"!

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Nivlag1 ~ Might be time to find another pulmonologist. My husband has a home concentrator that goes up to 10 liters. He doesn't need it that high but it does go to 10. And the regulator he uses on his tanks goes up to 15 liters. Sounds like you need some meds to help control the cough.........so again, if this doctor thinks one can just "control" their coughing..........I'd say he doesn't know much about pulmonary fibrosis. Saturations that get as low as 63 are dangerous for your other organ too.

From this site and others, I have learned that not many doctors know much about pulmonary fibrosis. Not sure where you live but ask around or as we have done, interview doctors to find out how much experience they actually have treating PF or IPF. A Center of Excellence is a step in the right direction in finding an expert in PF/IPF and also getting a second opinion.

In my humble opinion, you aren't getting the proper medical advise from your pulmonologist. Perhaps there are some others on this site that live near you or know your area and can help with some qualified names.

Best of luck..........and keep us posted.

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I have an Invacare Platinum 10 concentrator that goes to 10 lpm at home and a Helios liquid portable that goes to 15 lpm. I am in total agreement, it is time to find a new Pulmonologist.

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You know in my heart I have known my doctor did not understand IPF but when I was first diagnosed I went out to National Jewish in Denver and they said that most local pulmo docs may never see a case of IPF in their careers so I thought he and I would learn about it together. After 5 yrs I have learned so much from support groups, webinars, and reading. I guess my doctor who thinks he knows everything did not feel the need to "learn anymore".

I was just in touch w a caregiver I met a few years ago. Her husband goes to a pulmo right here where I live and they think she is wonderful. I know she had done alot of things that I wondered why my doc did not do. So tomorrow, I will be calling her for an appt.

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Sounds like you're heading in the right direction. Hope you can get an appt right away. Let us know how it goes.
~Judi

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On tank, Max 25 l/min when playing pool, canula in mouth. Probably could use more but highest regulator I could get. I think people would get around more if they turned their oxygen up. Way up. 2.5 sleeping. 5 up at desk. 9 moving about house, sitting in shower. About to start using tank at 15 in shower as I'm getting too tired. Adjust concentrator with end of line valve. Must have!! On tanks, 15 going outside, getting in/out of car. Back down to 5-6 when driving or eating.

I use 100 feet of tubing attached to my 10 l/min concentrator which then outputs about 9 l/min. Keep a cylinder with a 0-15 l/min regulator by the kitchen and in the bedroom where I often end up after a little walking around and suck on the second canula until my breathing subsides.

I take morphine 15 ER twice a day to ease dyspnea, the panicky feeling. Some correlation to low oxygen, but not much.

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My father is on Oxygen almost 20 hrs a day. He is given oxygen at 2. This is since 9th Feb 2013.
We are observing that Oxygen level is 97 when he is on oxygen (using Oxy meter showing oxygen level in % spO2)
When he is not on oxygen for 30 minutes or so, the level falls to 70.
Please suggest, shall we use POC or any other way. He is not overcoming the weakness and that's what worrying us more and more.

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piyujain ~ My question would be why is he only on oxygen 20 hours a day when his saturations drop to 70 when he is off oxygen for only 30 minutes. Just a reminder that low saturations levels can damage other organs. My husband's doctor says he should keep his O2 at 91 or above at all times. If it does drop below 91 for some reason he recovers in less than a minute. My husband also uses a C-pap machine at night that is hook into oxygen.
~ Judi

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Well the drama continues. I decided to find another doctor. However, I do not want to just go to any pulmo doc that will be as ignorant of IPF as my present one. There is a doc here in town that I personally know has treated two IPF patients and they love her. So, I called to make an appt and they will not take my ins which is AARP Medicare Complete PPO from United. I could not believe it. I then called Shands at the Univ of Florida to make an appt there since they are an ILD Center of Excellence. I figured maybe they could refer me to a local pulmo w IPF knowledge. They will not take my ins. either!! I thought United was a reputable ins company and never expected this. I called Medicare and I cannot change to another plan till the open enrollment period in Oct and then it takes effect Jan 1, 2014. I really do not want to wait 9 mos to find another doctor considering the decline in just the last 3 months. Any suggestions?

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I was dx sept 2012, I had a full respiratory failure and spent seven weeks on the vent, went home for 12 days then back with pnumonia and back on the vent. So I am still recovering from all that. I'm on 2 l 24/7. And 5 with exertion. But as I become more active my needs are dropping. I usually leave the concentrator set at 4 because I keep it in the kitchen so my tubing reaches everywhere.

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Doctors and hospitals know which insurance company pays the most and deal with them regularly. Bottom line is they care more about their money than the patient. Before you get new insurance call them and find out what the heck they will accept.
I was diagnosed in Sept. 1996 with PF and a component of COPD. I have been on O2 for ten years at night at 4LPM. My daytime sats run around 89-91 and the dr is happy with that. If they go below 88 I am to call him.

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I'm on 8 LPM 24/7. At home I use a concentrator. When I'm out I use liquid O2 Helios unit, usually set a 8 LPM. When I am riding in the car, or just sitting in the pew at church I can turn the unit down to 6 LPM, but not for long. My DCLO lung function was only 19% the last time they did a lung function test.

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I was diagnosed at the end of 2007 and needed oxygen 24/7, 2-3 LPM at rest and 5-6 LPM upon exertion. I stayed in that range until the summer/fall of 2012 when rather suddenly, the 5-6 LPM top-level was not nearly enough. I realized it the day I went to the grocery store with my portable oxygen concentrator (which had a maximum of 5 LPM on pulse-dose and 3 LPM on continuous flow and my wife had to help me to the car...in fact, I really wanted her to put me in a basket and push me). I stated checking closely with the oximeter, and sure enough, standing and walking 10-feet from the living room to the kitchen dropped my oxygen sats to the low 80s/high 70s with the oxygen set at 6 LPM...and this happened every time I made that walk. A re-evaluation bumped my exertion numbers up to 6-10 LPM (the at-rest numbers stayed at 2-3 LPM) and Pulmonary Rehab was prescribed. In 6 weeks of rehab, I learned resting and breathing exercises and techniques (as well as a formula to increase time & speed slowly and steadily) and by the end, was able to complete the 6-minute walk without exceeding 6 LPM (albeit it was more like a 6-minute leisurely stroll). Still, I needed no more evidence to convince me of the value of rehab and exercise to "maintaining"...so I still am doing the same set of exercises (at home) for 1 hour a day, every day, and for the 1st time (yesterday) did the 6-minute walk (on the treadmill) at 2.3 mph (which is certainly a good bit faster than I did the rehab-graduation walk).

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DJ2821...be sure to check your concentrator when you are using a regulator valve on your tubing...I tried the same set-up and when I ran the concentrator on 6 LPM with the tubing-regulator set at 4 LPM, the concentrator started to make a high-pitched whining sound. I called a local company that repairs/rebuilds concentrators and the tech told me that using dual regulators (the concentrator already has one) can greatly reduce the life of the concentrator and void the warranty.

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