Oxygen Questions

[Karen Martin]

I think it would be best if you wrote down your questions for the doc.  I understand your anxiety, but you really need to know exactly what you should and should not be doing for your mom when her oxygen levels drop.  I have IPF and emphysema, technically, CPFE, and live alone.  While it can be tempting to make your own decisions and tweaks, it really is best to be sure the doctor is on board with what you are doing.  Do both your mom and yourself a favor and take a deep breath.  Then, write down all of this and CALL the doctor for answers.  Good luck to you both.  Your mom is a lucky woman to have you.  🙂

Karen

[Sidney Vail]

I have questions on this also. I’m 63 and just diagnosed. Put on 2L of Oxygen, with no instructions on when I’m supposed to use. Just when I get low? Always? Sitting, I’m at 90 to 92. Upon waking, I’m at 93 – always. I feel fine. Moving around the house I drop to low 80’s. Exerting myself, bending, brushing teeth or carrying something – I go to low 70’s. I recover quickly though – so I’ve never really used the oxygen except for odd occurrences. I pay attention and adjust to bring my levels back up. I wonder if I’m doing damage sometimes though. Does the low saturation take a while to do damage, or is it immediate.

[Mark Koziol]

Hello Sidney, your resting oxygen rate is almost at the low normal rate. You should contact your physician for specific instructions on your oxygen use. In my experience when I was prescribed o2 it was for constant use and I used more o2 when I exerted myself in order to keep my saturation above 88%. The damage will not be done immediately but your doctor either wants you to keep the oxygen saturation above 88% or 90%. Please call your doctor for specific instructions and also have him write these instructions on paper for you. Take care, Mark.

[Charlene Marshall]

Hi Kristin,

Thanks for writing about this topic, it is one that most of us are continually learning about as well. Oxygen needs vary so widely from patient to patient, so I’d agree with other replies in that you definitely want to be asking her physician all these questions. I can say that oxygen saturations ideally should never be under 89 as that risks damage to other organs. However, I also know how difficult it can be to dress with cannulas on. If you can’t access your physician quickly – I know they can be tough to track down – the oxygen supplier may be able to advise you on some of your questions too, ie. about bumping her up when she’s laying down. It sounds like you’re doing the right thing by bumping her up to maintain >88 saturations, and I can’t imagine doing this is harmful but it is probably best to ask a professional. Your Mom is so lucky to have you Kristin, I am happy for her! Keep up the amazing work caring for her and feel free to write us anytime 🙂

Sincerely,
Charlene.

[Bill Kelly]

If your O2 level drops you will see an increase in heart rate as your heart tries to get more oxygen.  This is what happens in my case.  So I always wear O2 when I’m doing physical activities.  Continually using your oximeter will tell you when and where you should be using it.  Ask your doctor but I don’t think people in our situation can overdose on O2.  I always try to stay above 88%.

[Charlene Marshall]

Good suggestions Bill, thanks for writing to us about your experience! I also believe we can’t overdose on oxygen given our situation with IPF/PF, though I’d love to have that confirmed. From my understanding, it is important to increase 02 to whatever we need (and our machines can accommodate) to keep our saturations above 90% where there is less impact on your heart. I also see my heart rate increase when my oxygen levels drop.

Take care,
Char.

[Wendy Dirks]

This is all very interesting for me because when I went for my 3 month checkup today, the consultant told me that my lung function was stable enough for her to defer putting me onto MMF and instead she would send me to be assessed for ambulatory oxygen. She told me I wouldn’t need it when I was sitting or resting but it would make it easier for me to get out and about. So I’m following all this with interest. Of course, a part of me is disappointed that I’m taking the next step but I’m also excited about the possibility of something to help with my breathlessness. I’m sure I’ll have loads of questions once it’s actually prescribed.

I mentioned these forums and how much help they were too. 🙂

[Charlene Marshall]

Hi Wendy,

Thanks for sharing, and yes, I agree – the forums have really helped me learn to manage life with supplemental oxygen as well. More so sometimes than the physician orders! It is normally to have lots of questions about it when you get the prescription, we’re all here for you as are the oxygen providers which is nice as they tend to be more readily available than my physician. I really noticed a difference in my physical abilities when I was put on oxygen, it did help the breathlessness which in turn helped with my energy. While I wish none of us had to deal with this, and I know accepting oxygen is a big step, it ultimately was very helpful for me. Feel free to ask questions anytime!
Charlene.

[Wendy Dirks]

Thank you, Charlene, and especially for the recognition that accepting oxygen is a big step. I know my friends are all trying to be upbeat and positive, but sometimes we need to have someone recognise how traumatic it is to reach the next step in treatment. Everyone keeps telling me how great it is that I’ll be on oxygen so I can do things I struggle with at the moment without validating my feelings of ambivalence about it. I feel like shouting at them, “Don’t you understand what I’m saying? Now I need oxygen and have to go around with a tube in my nose, you numpties! Of course I feel in a state of shock!” I’m so glad I have this forum where I can vent.

[Charlene Marshall]

Hi Wendy,

I just have to start this post by saying, your comment of “numpties!” made me howl and I really needed a laugh today, so thank you 🙂

Feel free to vent anytime, I distinctly remember being caught between the wanting oxygen so I could do more and feel less fatigued, but also knowing it means my disease is progressing. That was hard to swallow, and so many of my friends even tried to encourage me with the “perks” of oxygen like disability parking, or being prioritized in lines but I still couldn’t see it that way. Be gentle with yourself when it comes to accepting the use of oxygen, it isn’t easy but know that we’re all here for you. Feel free to write us anytime!

Hugs,
Charlene

[Wendy Dirks]

I’m glad you got a laugh out of that! 🙂

[Kristin]

Thank you to everyone for the suggestions. 🙂 I’m so happy that I found you all! It’s so hard going through this alone! We have an appointment with MGH Cardiology tomorrow. It’s tough because the symptoms of heart failure mimic those of the ild/fibrosis, and mom has RVSP/elevated RA pressure, from her echo of a few weeks ago.  With regard to oxygen – we just received our Inogen at Home concentrator and an Inogen poc, after a long paperwork battle with medicare, Inogen, and our pulmonologist office. They are both so very quiet, and cannot be heard throughout the house, unlike the Invacare we had. Could someone please tell me why tanks still exist, when there are poc’s? I just don’t understand that. We were also prescribed nasal spray, Atrovent, for the post nasal drip, and we are starting pulmonary rehab/therapy in two weeks. I’ll let you all know if either help! Again thank you all! <3 ~ Kristin

[Mark Koziol]

Hello Kristin, most poc’s that are for carrying around purposes only go up to 5-6 lpm. This is also pulse and not continuous flow. Most home concentrators go up to 10 lpm at continuous flow. I’m my own case I was at 4 lpm at rest and 6-8 lpm at exertion. This was all on continuous flow. I needed to use the metal cylindrical tanks you often see in the hospital and sometimes with people on the streets. I hope this helps. Mark

[Karen Martin]

I have people ask me often if I wouldn’t like to have a poc.  Of course, I would, but I am like Mark and need mor oxygen than they can provide and at a continuous flow.  I struggled with that for a while as I think we all struggle with various stages of this.  Some of my friends suggested I should knit a cover for the tank (which you cannot do) because I am a knitter.  One suggested a giraffe and one suggested a flamingo.  It got me to thinking and I finally came up with a different solution.  I decided to name my “friend.”  I now introduce him as Aristotle…Ari for short.  Keep smiling!

 

[Mark Koziol]

Hello Karen, thanks for some fantastic humor. You have a wonderful attitude. Please never sway from being yourself. The world needs more people like you. Best wishes, Mark

[Mark Koziol]

Hello Karen, thanks for some fantastic humor. You have a wonderful attitude. Please never sway from being yourself. The world needs more people like you. Best wishes, Mark

[John Mark]

Hello everyone! Mark thanks for telling your lpm flow under exertion,  I was starting to worry when I saw all these 2 and 3 lpm flow all the time.

I have an aggressive form of IPF and went through all the oxygen system pretty rapidly. I now use 10 lpm Invacare machines for around house and substitute with bottles if I do any real work or go outside.   My doc told me to stay comfortable and keep 02 level above 90 and that I could not OD on Oxygen with my condition of  IPF, so under exertion I run 10 to 12 lpm. I told him sitting around I could turn down to 3 or 4  or nothing and stay above 89 maybe, he said don’t do it for two reason one you will forget to turn it back up and secondly you will be starting at a low saturation point when you start to move. So I  set around with 8 to 10 lpm flow and 98% oxygen when  I start to move it drops very quickly like he said and like he said when I try to turn down I forget to turn up. In my case if  drop to low I immediately go into coughing fits and  sweats and have to sit by fan to regroup. Does any else do this when they go too low on oxygen?

[Mark Koziol]

Hello John, thank you for commenting. I see you are contemplating a lung transplant. I hope you have started the evaluation process. There is a window medical professionals talk about and with your high flow I have to believe you are in the window or close to being in that window. Before my my transplant most of my time was spent in an electric scooter at work. I had the same problems as you. Walk 15 feet and then succumb to a coughing spell that would wipe me out for awhile. As soon as stood up my heart rate would rush into the 130s. This was not enjoyable time and I resonate with what you are experiencing. Take care, Mark.

[Karen Martin]

Thank you, Mark.  I appreciate your comments.  I know there are others out there with much more difficult situations than mine, so I try to stay positive.  My late husband had a great sense of humor about such things and I think some of it rubbed off on me.  Again, thank you for your kind remarks.

[Mark Koziol]

Hello Karen, you are welcome. I think having a sense of humor is what helps us through our adversity. Sorry for the loss of your husband but I know you have wonderful memories of him especially with his great sense of humor. Take care, Mark.

[Bill Kelly]

Mark and Karen

If you need more than 3L continuous for outside activities I think there is only one option: Liquid oxygen LOX.  I have been on O2 for 4 years.  I have ipf and was recently diagnosed with lung cancer.  It never rains…..   .  However I feel fine – really.  I have  studied O2 and tried about everything.  I really feel for John who needs these huge doses of  O2.

Here are some of the things I’ve found:

If you are doing something that requires continually changing physical action eg playing tennis or table-tennis or doing aerobics you need continuous flow.  I simply can’t remember to breathe with pulse flow when I am doing something else that require concentration.   You may be able to, but I can’t.  An oximeter will tell you.

Portable machines have settings for pulse flow.  These settings DO NOT correspond to L/Min.  Get that clearly in your mind.  A setting of 6 is not 6L/Min pulse, whatever the salesman says.  The handbook should tell you exactly how much O2 per pulse at each setting.

I need 4L/min continuous to play TT.  A small O gas cylinder weighing 5.7 lb lasts about 20 minutes at 4L.

A LOX portable like a Helios 850 lasts over an hour and if I then turn it down to 2L demand (ie pulse on demand) it will last all day.  By accident or design it weighs about the same as the portable gas cylinder, 5.5 lb and is easily carried in a backpack.

“Pulse” and “Demand” are different.  “Demand” on O2 cylinders or LOX portables is true L/min ie D2 is the equivalent of a puff of O2 at a rate of 2L/min.  “Pulse” on POCs is just what the handbook says it is eg for an Oxlife independence a pulse setting of 2 provides a bolus (puff) of 32mL, this is not 2L/min.

Suppliers in the US resist providing LOX because the remuneration is uneconomic.   That’s a fancy way of saying Medicare pays peanuts for LOX.

If you plan on flying commercial you have to have a POC and you have to have enough batteries to last 150% of the length of the journey.  This makes it difficult to use the very light POCs because you’ll need an awful lot of batteries.  You definitely will need more O2 at altitude than you do at sea level.   Plane cabins are kept at the equivalent of 8000 feet altitude I believe.

I hope this helps.

[Karen Martin]

Hi, Bill.  That is a LOT of information!!  Many thanks for all of it.  Someone else had told me about LOX, but I haven’t looked into it just yet.  Sounds as if I really need to do that.  When you say Medicare doesn’t pay well for it, does that mean it is harder for a patient to get them to accept a script for it?

I can certainly tell the difference between pulse and continuous flow.  I am one of those people who can manage with low lpm when sitting, but I tend to forget to turn it up when I get up until I am SOB!  Then I feel like smacking myself for that, so I tend to run my concentrator at the usual level for activity, or close to it, most of the time.  Not sure that is really a good thing, but it beats falling down.

It has helped me to hear from a couple of people who also need more than 2-3lpm.  I don’t know anyone else in my situation around here. I have both emphysema and ipf.  No one in rehab has a high O2 requirement.  As for traveling, that just seems like too much to deal with.  Maybe one day…

Thanks again for your information.  I will be talking to my doctor about it.

[Karen Martin]

@kristin-andrews

 

Kristin, I hope you are still checking in from time to time.  Your questions about helping your mom have stayed on my mind and I was hoping to offer some advice that might help you in caring for her.  You said it is hard to help her wash and dress while she is wearing her oxygen.  I don’t know how ambulatory she is or how much she can do for herself, but I find it helpful to take care of half of my body at a time.  I usually dress my lower body first, putting things on up to about my knees and then standing to adjust everything.  (Sorry if this is TMI, guys.)  Then I dress my upper body, only removing my tubing when I have to.  It helps to wear things that button up the front.  Even if your mom has limited mobility, these things might help.  I hope by now that you are beginning to get into a routine that is working better for both of you.  It is all a learning experience, that is for sure.

[Bill Cusack]

I’m having trouble getting an emergency oxygen tank from my oxygen supplier. I’m told Medicare pays for a stationary and a portable Oxygen supply. My supplier only handles electric oxygen concentrators. My portable came with 2 batteries. Each battery lasts one hour at 3L. I’m on 4th floor of all electric condo building including elevator. There are occasional power fails. I’m told I can pay for an emergency tank for myself as my supplier meets medicare emergency requirements. I should have paid more attention when I committed to 5 years contract with my supplier. I’m appealing but it is not going well. Any suggestions appreciated.

[Charlene Marshall]

@Bill-Cusack,

Hi Bill,

Let me know if your appeal continues to not go well or does not end in your favor. I may have a suggestion for you to try to obtain that emergency oxygen support you need. Send me a message if you need more information, and I’ll be sure to forward it onto you.

Sincerely,
Charlene.

[Karen Martin]

@bill-cusack

This is not just wrong, it is downright criminal!  I am sorry to hear this.  I use E-tanks as my getting-around mode and the driver told me that there is a large tank that will last about 48 hours at 4lpm.  I don’t know if you can get that from your supplier or not, but if you are going to end up having to pay for something it might be the best way to go.  I wish you luck and hope someone else out there has better advice for you.

[Linda 6996]

I just had some tests done yesterday and was told that although my levels have dropped, I don’t need home oxygen yet but I do need oxygen if I fly to Florida this winter because my levels will automatically fall some more..  Is anyone else in this position and is it a complicated or expensive process to arrange?  I live in Toronto but I was thinking about flying out of Buffalo.  I haven’t booked my flight yet…are some airlines better to work with than others in trying to arrange this?  Is there anything I should be aware of before starting the process.  Thank You!

[Charlene Marshall]

Hi Linda,

@linda6996

Really great question! I also live in Canada and fly often with both WestJet and Air Canada both domestic and internationally. Air Canada requires a physician letter that is (in my opinion) extensive and unnecessary but WestJet doesn’t require any documentation if you’re using an FAA approved portable concentrator. Would you be able to rent one of those to bring on board, and have your levels measured to determine adequate LPM/oxygen needs ahead of your flight? I don’t have much experience with in-flight oxygen but I know this was an option with WestJet as well if I needed it. They required me to cary 150% of the flight worth of 02 batteries which was the only annoying part of the whole process but otherwise their customer service was extremely helpful for me to fly all the way to Hawaii with oxygen. Feel free to connect with me if you want more information 🙂
Charlene.

[Bill Kelly]

Bill Cusack

Assuming a large O2 cylinder is impossible, take a look at EBay and see if there are batteries for sale there.  I bought several for international travel and they are all fine and far cheaper than new.  I know it depends on which portable you have.

Many services on Medicare are subject to competitive bidding in my area.  I think the companies underbid to get the contract then find they can’t do it it without losing money so they cut, not just to the bone, but into the bone.  They simply don’t perform the service.  It is no accident that 2 long time med supply companies in the western states were bought out last year and 90% of the employees fired.

This what happens when government is in charge.  The blame lies with congress so that is who we should be pressuring.

Sorry for the editorializing, but when it’s your life it tends to concentrate your mind.

[Bill Kelly]

OK Linda ( @linda6996 ) first

Do you own the POC or is it the government of Canada’s?  If it’s Canada’s, do they allow you to take it out of the country?  Medicare in the US does not allow you to take its POCs out of the country – though if you have one I don’t see how they could stop you.  There is no POC police.

Every US carrier has a different procedure and you will find it on their website.  There is one US government regulation which is enforced:  You must have batteries to cover 150% of the length of the flight.

Delta is fairly easy, I have flown 5 times with them, 3 internationally.  You don’t even need a doctor’s note but I always carry one just in case.  Start well ahead by going to Delta.com or your airline of choice’s site.

You can rent POCs and/or extra batteries.  On Medicare, your supplier must supply a POC for travel within the 50 states.

I hope this is helpful.  If you have any questions I’ll try to answer them.

[Kristin]

@casey

Hello Karen:

Thank you so much for the suggestions with regard to dressing my mom, while she is wearing her oxygen.  It is a learning experience for us both.  I try to allow her to dress herself to give hear some sense of independence.  I like to do things myself, and my mom feels the same.  I rigged up a hook in the bathroom that constantly holds the cannula cord for her, as I don’t want the nose piece ever touching the floor. So far so good.  This isn’t easy, and I worry for our future, as this disease follows its’ own timetable.  I hate it.  We are starting pulmonary therapy, but with the snow here, I’m going to ask for exercises for mom and I to do at home, as I don’t think we’ll be attending much.  I’m keeping her oxygen level at 3L now, as she seems to be doing well, and not out of breath as much.  The poc vs. the tanks seems to be a toss-up.  If I don’t plug in the poc, it doesn’t last very long at 3L.  I am happy that I’m not filling tanks anymore though.  With regard to her cardiology appointment, mom’s lungs are pushing blood back into her heart, causing it to work harder.  I’m just so upset with all of this.  Her heart rate has stabilized with the metoprolol 50mg 2x, thank goodness.  We are managing, struggling, and learning.  I lost my dad on September 30th, and I feel that my life is a nightmare that I can’t wake from.  Thank you all for your kind words of support… if anyone is in the Boston, Massachusetts area, please feel free to message me.  I’d love to chat locally with someone who is living this life as well to compare notes.  Thanksgiving blessings to you all. ~ Kristin

[Karen Martin]

@kristin-andrews

Kristin, I hope some of the suggestions you have gotten are helpful.  This is all a “work in progress” sort of thing for everyone, I think.  You just go from day to day, doing your best and trying to learn what works.  This is a great place to “meet” with others.  You are smart to ask for things your mom can do at home because weather certainly can affect her mobility.  Even when you can get to rehab, it is good to have things you can do at home.  Every bit helps.

I am sorry to hear about the loss of your dad.  I see why you are feeling like life is a nightmare.  I don’t know how young you are, but if your mom is now 93 and your dad just passed away, you have probably had them for a fairly long time.  That is a blessing to be thankful for.  I hope there will be many more coming for you.  Karen

[Kathleen Greco]

Hello, I was so dispointed & surprised how much it affected me.(I wrote before) for almost 6 yrs .I did great but I really worked hard for it,but then in Oct. had an exacerbation & was hospitalized & told I would now have to be on Oxygen all the time and a high amount 8 resting 15 assertion but never used the 15 so far.   I am really down about thid more than I thought…..      also a therapist & should have know.has anyone been on that high of Oxygen..I do not feel bad. Everyone take care of yourselves.                 kathleen

[Charlene Marshall]

Hi @kathleen-greco

Thank you so much for sharing your story of how needing additional oxygen made you feel mentally and emotionally. This is something that is rarely talked about, and is very scary for those of us who either suddenly need oxygen or need an increased amount. Your words really resonate with me as I only needed oxygen on exertion before I fell very ill (pneumonia, influenza etc) late last year and now require the use of 02 24/7. I feel like a completely different person than I was, and am struggling to accept my dependency on 02. It sure does make us struggle, I agree. Be gentle with yourself and reach out if you ever need support – we truly understand on this site.
Warm regards,
Charlene.

[Kathleen Greco]

thank you so much for responding to my mail. Sorry to say not feeling much better & this is not like me I think that’s why all the worry around me…sometimes I think & this all is for what ?? maybe 6 months? I am so sorry to say this to all those awesome people out there struggling everyday…..bless each & every one of you .Katlheen.

also as a therapist should have learned something after 50 years.everyone who comes to this site is so very awesome.

 

[Charlene Marshall]

Hi Kathleen,

So nice to hear back from you, sorry for the delay in replying. Please don’t apologize for how you are feeling – navigating this cruel disease is not easy and I don’t think it sounds abnormal, to be honest. We need time to process the news of this disease, but the good thing is: the published prognosis (3-5 years) for those living with IPF is old, as it was published before the antifibrotic medications. Try not to think too much in advance, and live for each moment for today, though I know that is difficult. Are you seeking support for your emotional needs at this time? I am also a therapist and know we both believe in the benefit of professional help BUT I also know how hard that is when we’re professionals ourselves. Please take care of your health, both physically and mentally at this time. Thinking of you!
Charlene.

[Kristin]

Hello everyone!

A few more oxygen questions for you all, as our pulmonologist is just dreadful.  Never responds to any of my questions!  And he practices at the second best hospital in the country (?) Just dreadful!

Nasal cannulas… I’ve been reading that basic nasal cannulas aren’t meant for a flow rate above 5 or 6 lpm (?)  Then what are you all using at a flow rate above 6?

Using a Y connector… Have any of you used a Y connector to connect two concentrators?  If so, does the flow rate have to be set the same on both machines? Such as 6 lpm on one, and 6 lpm on the other?  Anything else I should know about this?

What does an exacerbation/’flare up’ entail, and how long have they lasted for you?

Mom is having a ‘flare up’ as our pulmonolgist calls it, and told us to stay at home, do not come to Boston/MGH ER because of Covid.  So, we’re trying to sort through this ourselves, and it’s scary!  Is there anything I should be doing to mitigate the flare up?  Mom is just requiring a crazy amount of oxygen… no coughing at all, nothing unusual other than the low oxygen… she is not on any medication other than an antibiotic for a possible lung infection I assume (?) Why would he put her on an antibiotic?  Again, he is really not a conversationalist, so when I ask him anything, he treats me like an imbecile, and tells me he knows what he is doing… can you imagine?

Thanks to all of you for your responses in advance!

Love (!)

Kristin