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    • #21967
      Kristin
      Participant

      Hello… I’m the caregiver to my 93 year old mom. We live together, and I love caring for her. Questions:  It’s hard to wash and dress her in the morning, and put on pj’s in the evening while she’s wearing her oxygen, so we remove her cannula for these activities.  A few questions… is it ok to do this?  Her level goes from 89ish to 79ish, and then we bring it right back up.  Is this drop and then the return, over and over, hurting her?  She’s on 2L, but I jump to 3L sometimes to ‘rush it,’ and also bump her to 3L while she is climbing the stairs, but climbing the stairs still wipes out her oxygen to 80.  Also, being new to all this, what can I expect?  She’s on no medication for this yet, other the than the oxygen. I’m hesitant to start her on any new medication as she just turned 93 years old. She has the loss of appetite, the lack of energy, and an intermittent cough – some days she coughs, some days she doesn’t.  And the post-nasal drip while sleeping, but is that caused by the oxygen?  She never pnd before.  Is it normal for her oxygen level to drop more when she lay down?  I bump her to 3L at night to maintain 88. Sorry for so many questions… just nervous.  She’s my everything. Thank you in advance. I’m happy to be a member here… her pulmonologist and his pa at MGH are great, but I forget to ask them questions sometimes, as I’m a scatterbrain since all this started. ~ Kristin in Boston, Massachusetts

    • #21969
      Karen Martin
      Participant

      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

    • #21973
      Sidney Vail
      Participant

      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.

      • #21974
        Mark Koziol
        Keymaster

        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.

    • #21978

      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.

    • #22003
      Bill Kelly
      Participant

      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%.

      • #22017

        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.

    • #22016
      Wendy Dirks
      Participant

      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. 🙂

      • #22018

        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.

        • #22022
          Wendy Dirks
          Participant

          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.

        • #22024

          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

        • #22031
          Wendy Dirks
          Participant

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

    • #22020
      Kristin
      Participant

      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

      • This reply was modified 7 months, 3 weeks ago by Charlene Marshall. Reason: formatting
      • #22025
        Mark Koziol
        Keymaster

        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

    • #22049
      Karen Martin
      Participant

      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!

       

      • #22052
        Mark Koziol
        Keymaster

        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

      • #22053
        Mark Koziol
        Keymaster

        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

    • #22055
      John Mark
      Participant

      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?

      • #22056
        Mark Koziol
        Keymaster

        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.

    • #22059
      Karen Martin
      Participant

      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.

      • #22060
        Mark Koziol
        Keymaster

        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.

    • #22077
      Bill Kelly
      Participant

      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.

    • #22083
      Karen Martin
      Participant

      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.

    • #22098
      Karen Martin
      Participant

      @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.

      • This reply was modified 7 months, 2 weeks ago by Charlene Marshall. Reason: tagging
    • #22103
      Bill Cusack
      Participant

      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.

      • #22120

        @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.

    • #22110
      Karen Martin
      Participant

      @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.

    • #22104
      Linda 6996
      Participant

      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!

      • #22133

        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.

    • #22122
      Bill Kelly
      Participant

      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.

    • #22121
      Bill Kelly
      Participant

      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.

    • #22127
      Kristin
      Participant

      @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

    • #22151
      Karen Martin
      Participant

      @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

    • #22882
      Kathleen Greco
      Participant

      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

    • #22906

      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.

    • #22918
      Kathleen Greco
      Participant

      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.

       

    • #22985

      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.

    • #23835
      Kristin
      Participant

      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

    • #23836
      Bill Cusack
      Participant

      I tried oxymizer products. My portable concentrator could not provide sufficient O2 for exercise at health club. The.Oxymizer moustache and pendant tubes increased my spo2 for exercise.

      https://pubmed.ncbi.nlm.nih.gov/3709245/

    • #23839
      Karen Martin
      Participant

      Kristin, I can only speak to your question about the nasal canulas. There are what are deemed “high flow” canulas and tubing. Mine are a green color and your provider should be able to get those for you and your mom. Be sure you ask for those.

      As for your really horrible pulmonologist, I hate to say it, but I would be searching for someone else to care for your mom. I know in a lot of cases our choices are limited. I have that same situation where I live. Without traveling a considerable distance, I am stuck with the one who is here. However, it might very well be worth looking into. No doctor should be allowed to treat the caregiver or patient as an “imbecile” when you are just looking for answers. That is, after all, what you are paying them for! I wish you good luck in your quest for help with your other questions as well as a better situation for your mom. Karen

    • #23841
      Bill Cusack
      Participant

      Regarding learning about  the many ways the oxygen in usa:

      1.) I learned a lot at pulmonary rehab. Medicare pays for a very few hours. My provider runs about 10 patients at a time with 5 different 15 minute routines. 1-Treadmill, 2-NuStep, 3-Kazoo(Amazon Adurance Breathing Exercise Device), 4-Hand bike(Ebay – Mini Pedal Exerciser Cycle Bike Leg Arm Desk w/LCD Display Fitness Home Exercise), 5-Stationary Bicycle.

      2.) Respirtech Vest (Medicare pays for treating  specific disease)

      3.) Lung transplant is available to older healthy people with pulmonary fibrosis. I have yet to pass the transplant evaluation. the process has taken a year and is very informative.

      4.) proper breathing -1.) Diaphragm is better 2.) pursed lips exhale to increase pressure in lungs to open collapsed/congested alvioli

      5.) Interactions with other patients is very informative. There are groups like AA for lung patients.

      6. There are many Medicare cost restrictions regarding needed treatments, e.g. I can get a portable and a stationary electric oxygen concentrators. I must pay for any backup tanks. This is important when the electric power is out.

      • This reply was modified 3 months, 1 week ago by Mark Koziol.
      • This reply was modified 3 months ago by Charlene Marshall. Reason: formatting to remove code
    • #23850
      Kristin
      Participant

      Thank you both!

      Lots of information… Bill, #6 – that is a huge concern of mine… if the power goes out, and I just purchased a backup generator that should cover mom’s two concentrators.  As it stands, her poc goes to 6 pulse, and that’s just not enough. She has no tanks available.

      Looking for a support group in Massachusetts on the Internet… if anyone knows of a good one, kindly let me know?

      And thanks for the suggestions from rehab!

      Hi Karen…

      Mom is currently using a Y connector with two 7′ green tubes (Salter 1227-7-7), a green 25′ extension, and a clear nasal cannula… QUESTION: is the clear nasal cannula restricting oxygen flow?  If it is, mom might not need to run two concentrators.  Would you happen to know the make and model number of your cannula?  I’m just going to order it… it would take an eternity on the phone fighting to get mom a cannula from her oxygen provider. I’m going to send you a message with my phone number… please feel free to call me anytime.  I’d love to compare notes with you!

    • #23854
      Robert Obrien
      Participant

      @kristin-andrews

      Kristin where do you live in MA?  I am on the Cape. My pulmonologist is at BID but, with his recommendation, I have been tested 2X for transplant at MGH and am currently listed.  Everyone I have dealt with at MGH has been great but I haven’t dealt with everyone. Let me know if I can help. Reach out for Aliaa Barakat @ (617)412-0356 or [email protected]. you may fid her quite helpful, I hope.

    • #23867

      Hi Bill,

      Thanks so much for writing and sharing with us the experiences you’ve had with pulmonary rehabilitation. I have also learnt a lot from my participation in those programs! Sounds like a very similar process in Canada as the USA, except our tanks are primarily covered by insurance and concentrators (portable ones) aren’t always. Interesting. Thanks for sharing your thoughts 🙂
      Charlene.

    • #23883
      Kristin
      Participant

      Robert,

      Thanks for the reply.

      Live in MetroWest, corner of 495 and the Pike.  If you’re ever in the area, please lmk!

      Beth Israel is a great hospital.  Went there for a cardiac MRI – their tech is amazing, and doc’s spoke TO me, not DOWN to me.

      MGH is a huge disappointment.  My mom’s pcp prescribed nitrofurantoin, which almost killed her, and caused her fibrosis to really kick in. It has a side effect which clearly states ‘not to be given to people with fibrosis.’ Yeah…

      Her pulmonologist in Cox, can’t be bothered with us… and try to obtain the necessary paperwork for supplemental oxygen out of pulmonary… never happen without pushing the lazy workers there.

      We have been blatantly lied to in emergency room about my mom’s condition – told mom’s fibrosis has gotten ‘significantly worse,’ then all of a sudden it’s ‘stable!’  (The emergency room there is an absolute circus).  I had one nice e/r nurse tell me to ‘get my mom out of there, or she will become more sick!’ Can you imagine?

      Not a fan of MGH. I was… but not anymore.

      I hope you have better luck there.

       

    • #23884
      Robert Obrien
      Participant

      @kristin-andrews

      Kristin, strange things do happen.  I have had great results at MGH never had trouble getting help or questions answered etc.  I’m sorry your experience has been so poor.  My pulmonologist is Dr. Zebrek at BID; just great.  Sound like you’re in Westboro; I’m originally from Worcester. Stay well and keep your eye on Mom.👍

    • #23890
      Bill Kelly
      Participant

      Quoting Bill Cusack:

      4.) proper breathing -1.) Diaphragm is better 2.) pursed lips exhale to increase pressure in lungs to open collapsed/congested alvioli.

      I found these techniques very helpful particularly PLip breathing.  You can find the technique on the net.

      If I am doing correctly I can see my o2 level go up in minutes.

      • This reply was modified 3 months ago by Charlene Marshall. Reason: formatting to remove code
    • #23961
      Judi Pittman
      Participant

      What interesting info on oxygen being shared here.  I’d like to add a couple of things, to help Katherine and Kristin and maybe others.  My husband has had diagnosed IPF for 3 yr now (they now think it was there for several years earlier) and recently was using O2 on 5L only when he walked on treadmill.  None walking to bath or sitting in chair.  That was in early Feb.  But on Feb 17 he had a massive GI bleed that led to exacerbation and I nearly lost him.  Once that happened he immediately went to 8L but now 24/7.  I brought him home on 2/23 and he seemed near death.  We called in hospice on 2/27.  They hooked him up to two concentrators with a Y tube connection, each is set at 4L as instructed by O2 provider.  The first weekend, one of them failed (2 a.m.) and I quickly figured out I needed to establish a fast emergency connection to the large portable tank they gave us.  It is is about 4 ft tall and holds about 8 hrs worth of oxygen at the rate of 8L.  I now have a single connector and short tube hanging on the portable, so when a failure happened again, it only took me about 1 minute to switch from the double connector between the concentrators to the singe on the portable.  Also easy to switch back when problem was resolved (overheating in the corner where the tanks were but now has more air flow).  We also got a generator which uses regular gas or propane in case of power failure, which happens fairly often in our suburban area.

      In the six weeks since he has gotten stronger and now can walk to and from the bath from our bed which is a walk of about 12 or so feet.  He still has to have the O2 24/7 at the rate of 8L.  The exertion of walking even with the O2 drops his oxygen to mid to high 60’s and it takes a couple of minutes for it to return to about 90 or 92.  We also added a recliner to the room just 4 feet from the bed and he spends 2 to 4 hours in it each day watching the world spin through our patio doors.  He has maintained this routine now for this time and I’m thrilled that he is even able to do this month.  As to the question of how ‘long’ the exacerbation lasts, it is my understanding that the additional damage done to his lungs due to the GI bleed, will not heal.  His lung function test in January was 51% but that was when he was only using O2 to exercise.  Now it is much lower, but no way to know how much.

      My question for anyone who may use levels of O2 this high, is what next?  When Hospice was called in death seemed imminent and I praise God that he is stronger and more alert now, but what is next?   Will he just be plateaued at this level or will he continue to require more O2 as time goes by?  I admit to fatigue because he is 82 and I am 76 and getting up 3 to 8 times each night to help him to the bathroom (uncover, help with slippers, help onto walker, guide oxygen tubing along the way; then reverse) is exhausting.  He never went potty during night before the exacerbation and now does often so something changed internally.  I rest when I can next to him during day, (twin hospital beds make a great king sized bed) but there is frequent yo-yo-ing up and down to move this, find that, fill water, find the remote, fix meals, bathe and change clothes, do little housework here and there, etc.  Hospice tech comes in 2 x week to bathe and shave and nurse comes in once a week now since he is doing better.  I never thought ahead on what this final stage would be like but now that I’m in it, I seem to have a lot of questions.  Is there anyone in the group who can give me guidance?

    • #23969
      Mark Koziol
      Keymaster

      Hello Judi, sorry to hear about your husbands current condition. Many patients when they have an exacerbation do regain some of their lung function. I did but I didn’t regain all that I had lost. When your husband is evaluated by his pulmonologist the extent of the damage due to the exacerbation should be known. A suggestion for the nighttime bathroom visits; I used a hospital urinal for urine so I could keep my sleep from being disrupted. I have had a transplant and I still have a hard time staying asleep and it seems like the nighttime is the perfect time to urinate. So, I still use a hospital urinal. I ordered them on amazon. At least this will keep you in bed at night. Im sorry I can’t give you any advice on hospice or end of life care. I can say thank you for being a loving and caring wife. Your  husband  is a lucky man to have you by his side. Please take some rest for yourself and keep us updated. Best wishes, Mark.

    • #23971
      Bill Cusack
      Participant

      Thanks for sharing. Im 73 on o2 7×24. Maybe i missed something but just to be thorough – Many use tubing swivel connectors for low pressure to daisy chained cannulas to go 100+ feet from the concentrators. Inogen provides these with the cannulas.

    • #23972
      Kristin
      Participant

      Hello Judi:

      You are I are living the exact same lives, and it would be wonderful to compare notes. My mom recently went through a ‘flare’ and is still having issues.

      Would it be possible to chat with you on the phone? I’ll send you a friend request, if you accept, I’ll send along my phone number…

      Kristin

    • #23974
      Mark Koziol
      Keymaster

      @bill-cusack

      Hello Bill, for a home concentrator it is not acceptable for your tubing to exceed 50ft. The oxygen pressure will severely decrease if the tubing is over 50 ft. For an inogen pulse concentrator the length, the suggested length is about 10 ft or shorter. Mark

      • This reply was modified 2 months, 4 weeks ago by Charlene Marshall. Reason: tagging
    • #23994
      Ross Harris
      Participant

      I was prescribed an InogenOne G5 about ten days ago with an initial setting of 2 0n the device. The G5 is portable and I thought that it would likely provide enough oxygen to keep my SPO2% above 90% while walking at an average clip, for about thirty minutes. It turns out that my expectation seems to be wrong as my SPO2% drops into the low 80’s. Usually my recovery % after walking for this amount of time is 93-94% and takes about 7-8 minutes. I’m tempted to move up to the next setting(s) of 3 or 4. My sitting % rate is 94-95% at about 94-95 bpm on the heart rate. The InogenOne G5 handbook (down loaded from the internet) is not very helpful.

    • #23997
      Robert Obrien
      Participant

      Ross, crank it up; there’s no such thing as too much O2 so find the setting that meets your requirements.  I use the Inogen 3 (4 years) and I have it set to the max, 4.  The biggest problem will be battery time; the higher the rate the more power will be needed.  Good luck and stay well!

    • #23999
      Bill Kelly
      Participant

      Robert,

      Spot on advice,

      Bill

    • #23998
      Bill Kelly
      Participant

      Ross,

      Normally pulmonologists prescribe a quantity of oxygen per minute.  Very commonly they initially prescribe 2 liters/minute.  I looked up the G5 and it says “settings: 1 to 6”.  These numbers are NOT liters/minute.  The user manual of most machines tells you the value.  I don’t know if inogen mentions it.  If it does I couldn’t find it.  As far as I can see the G5 only provides pulse oxygen ie a pulse or bolus when it detects your inhalation.  Is this ok with your doctor?  Mine told me I must have continuous flow for sleeping.

      The gold standard is that your O level must not drop below 89% (some doctors say 90%).  If it does you must increase the O flow until it goes back up.  With pulse flow you must be sure that you are inhaling – easy to forget.  Inogen machines are very small compared with the POCs that certainly provide 2 or 3 liters/min continuous flow.  Salesmen have told me that a setting of 6 on an Inogen is the equivalent of 6 liters/min.  Common sense tells me that this is untrue.

      You can find comparisons on the net for all POCs.  Believe nothing unless it’s in writing.  POCs are highly profitable, there is a huge mark-up.  Caveat emptor.

      When you look at comparisons BEWARE if it is a commercial.  Many companies have fake reviews showing only what they sell.  If you Google POCs you will get a full page of ads.  Followed by many that are disguised ads.

      As far as I know there are no POCs anywhere in the world that provide more that 3 liters/min and a few more that can provide 2L/min.

      From the manual of a true 3L/min machine a table showing bolus volumes for pulse shows that at a setting of 6 the machine will provide 96mL per pulse at 20 breaths per min. (ie about 2L/min)

      I know this is confusing but the bottom line is get your O level up to where your doctor says it should be.  If your present machine won’t do that you need a better one or a different system.  This happened to me when I was first on O and tried exercising. (I needed 4L/Min to maintain 90% O saturation.)

      If I can answer any other questions I will. Good luck.

      Here is a good comparison of continuous flow POCs.  Everything is a trade off:  weight, battery life, ease of use, battery cost and price, FAA endorsement etc.  https://www.vitalitymedical.com/guides/respiratory-therapy/ranking-portable-oxygen-concentrators-with-continuous-pulse-flow

      Bill

       

    • #24003
      Karen Martin
      Participant

      I know that pulse and continuous O2 are nowhere near the same thing, but I disagree that there is “no such thing as too much O2.” I do believe that I have read that it can be dangerous to have too high a level being delivered. Just to be safe, I would strongly suggest you check with your pulmonologist. Depending on your personal diagnosis, there could be other things to consider in determining just how much O2 a person requires. Karen

    • #24010
      Ross Harris
      Participant

      Thanks to Robert, Bill & Karen for the very helpful comments and advice. I have a call in to my pulmonologist and I am prepared to ‘crank it up’ to the point where I get the oxygen I need. Ross

    • #24027
      Bill Kelly
      Participant

      I do not believe a pulse POC can overdose you with O.  I don’t believe any doctor is going to tell you to continue any activity that is causing hypoxemia.

    • #24028
      JillT
      Participant

      I tend to agree with Karen. I’ve been having all sorts of weird symptoms, both at the high and low ends of saturation. My respiratory nurse believes some of the symptoms relate to too much oxygen with resulting hypercapnia/hypercarbia. When I looked it up, the articles say people with PF/IPF can get this. I believe it’s more common with COPD and CF, but is possible for us as well. The symptoms I particularly believe to be caused by Co2 retention in my case are increased number of headaches, red nose/cheeks, chest pains and a feeling of pressure and “doom” (only word I can think of to describe it) at the base of my throat/breastbone – at times I’ve thought I’m having a heart attack; other times I’ve thought it was a really bad reflux attack.

      Because of this, I’ve recently had a series of chest/heart imaging done. Still waiting for results of a CT contrast angiogram, but the HRCT of chest found ‘severe’ fibrosis (as opposed to the prior 2017 scan that was still ‘mildly progressive’) and the echocardiogram found no significant heart issues but did identify pulmonary hypertension. Meanwhile, I’ve also been experimenting with reducing my oxygen levels depending on saturation and removing the cannula if I find myself above 95%.

      • This reply was modified 2 months, 3 weeks ago by JillT.
    • #24032
      Karen Martin
      Participant

      Jill T, thanks for chiming in with your experience. I didn’t think I was imagining having heard about there being adverse effects of too much oxygen. I recall we discussed it some at a Better Breathers group meeting. I don’t recall if it affects mostly people with COPD, but you are probably right about that. Guess I am just old-school enough that I don’t like to play with things I don’t know much about without guidance from the “experts.” As I said earlier, I know pulse and continuous flow are very different, but you still need to know all the facts. I wish you good luck with managing your situation. Take care. Karen

    • #24033
      Bill Kelly
      Participant

      Let me bring up an oxygen topic that hasn’t been mentioned but is critically important.

      If you in the US and on Medicare the initial decision you and your doctor make on what method you use is unchangeable after a short initial period.  You are stuck for 5 years with the provider and the what form of oxygen and what machine you get.  I don’t know if this is the same if you are less than 65, in another country, or on Medicaid

      I’m sorry I forget how long that period is.

      If you are active eg playing tennis or table-tennis you may need liquid oxygen to do this.  If you need continuous flow for any vigorous activities ask if you can get LOX.  You can put the cylinder in a backpack  and depending on your needs it will last longer than any other portable method.  You can do the same with gaseous oxygen but it won’t last nearly as long and you’ll have to carry spare cylinders with you.  I went through all of this when I was 1st on O.  I’ve tried everything and LOX is far and away the best system if you can get it.

      I believe there is a video on the PF Foundation website laying out all the methods.

    • #24037
      Mark Koziol
      Keymaster

      Hello Bill, thank you for providing this info. Very informative for our members who are on Medicare. Thank you again. Mark

    • #24038
      Bill Cusack
      Participant

      48 hours with new right lung

    • #24040
      Bill Kelly
      Participant

      Bill Cusack

      Congratulations, I’m happy for you.  You’ll be in my prayers.

    • #24039
      Bill Kelly
      Participant

      Here’s one of the PF Foundation seminars on oxygen therapy.  It is wonderful for those of us who are expert on neither oxygen nor what is available from suppliers. https://www.youtube.com/watch?v=QO45P_k5qbQ&list=PLpH8pAi91UL3l4fg5vsBkQMauqUA2FLPZ&index=7&t=0s

      Another from PFF from a different slant – best single one I’ve found, starts with basics: https://www.pulmonaryfibrosis.org/life-with-pf/pff-educational-resources/webinars/oxygen-equipment-overview

      You may need to allow Flash and cookies for this one to play.

      The very best column on the struggle to get liquid oxygen: https://pulmonaryfibrosisnews.com/2017/06/27/pulmonary-fibrosis-patient-shares-tips-getting-liquid-oxygen/

      If you are thinking of buying used portable ocs on Ebay or Craig’s list for, say, international travel I’m happy to share my experiences with you.  I got some good advice from the manufacturers of these machines.

      Just remember this is your life, not a rehearsal.  We don’t go around again.  Good luck to everyone here and do try to stay cheerful.

    • #24042
      Mark Koziol
      Keymaster

      Hello Bill Cusack, this is great news. Congrats! Mark

    • #24043
      Mark Koziol
      Keymaster

      Hello Bill Kelly, thank you again for the links and valuable info. Mark

    • #24046

      @bill-cusack

      Hi Bill —

       

      This is excellent news, thank you so much for sharing! Congratulations on your transplant, what a surprise but so happy for you. Best wishes, and I will be thinking of you throughout these next few weeks as you recover. Take care!
      Charlene.

    • #24073
      Stephen Gould
      Participant

      @bill-cusack

      Hi Bill,

      Great news, hope you have a good recovery.  Please share anything you can – I have my new patient call mid May to start the process to see if I can get on the list at Shands in Gainesville FL.   I know this thread is about oxygen, and I have been using it as needed on a 2-3 lpm rate.  This works fine when I am standing, walking, or in the kitchen, but my sats drop if I walk up the steep driveway to my mailbox.  I used some HSA money to buy a portable concentrator that goes up to 3 lpm, but may have to pay to upgrade if I need more.  My local oxygen provider is Lincare – haven’t asked them about liquid O2, but sounds like that would be a boon for lasting longer than a tank or the batteries on a POC.  Not to mention quieter than the machines!

       

      • This reply was modified 2 months, 3 weeks ago by Charlene Marshall. Reason: tagging
    • #24077
      Paul F Nichter
      Participant

      @warlock

      Bill Kelly, thanks very much for those links!

      My most recent problem regarding O2 came over these past couple weeks as the COVID shutdowns went into effect. A scheduled delivery from my provider did not happen, When I called the next day, the fellow on the phone said that the Gov had ordered lock down of all activity other than emergency services. This was not true. The limitation was to essential services.

      It took me another three calls over two days to reach a supervisor to voice my complaint. She apologized and explained that they reasoned that since I was ordered to stay shut in and I had my home concentrator, that I would not need tanks. I explained that I was on a lung transplant waiting list requiring regular hospital  visits and that I would not be able to make those visits, not make it to the hospital if I got the call for transplant without O2, and that my situation would soon become an emergency if they would not deliver the O2. She again apologized, understood and arranged for delivery of extra tanks beyond what I had requested.

      On my next hospital visit, I found that they were far less generous with dispensing O2 there. I had been taught on previous visits that they wanted me to use their tanks while in the hospital and these were always available right inside the entry.  That was no longer the case, and I had to follow directions to no less than four different locations before finding someone who could provide me O2 to use while in the building. Frustration was building by then!

      That night, on the local TV news there was a piece about how the COVID crisis had depleted hospital supplies of both O2 and of blood, There are so many ripple effects of this in the health care industry that nobody ever anticipated. We all learn.

      I have severely curtailed my own use of the O2 in tanks by staying indoors, walking and exercising on my concentrator supply, and using a pendant oximizer to make the tan last longer when I have to go out

      • This reply was modified 2 months, 3 weeks ago by Charlene Marshall. Reason: tagging
    • #24090
      Bill Kelly
      Participant

      Stephen, your O needs sound exactly like mine.  Unfortunately there are no portables that give more than 3L/Min.  Lincare is a multinational that certainly supplies LOX in some markets because I met a lady in my doctor’s office who was being supplied by them.  With portables it’s a simple matter of physics and chemistry.  The nitrogen is extracted by a tower or column containing zeolite.  To extract more N, thus leaving more O, you need a longer tower so size is a necessary factor.

      I used gaseous O for some time putting the smaller (B?) cylinders in a back-pack.  They are much lighter (5.8#) than a POC but they don’t last any longer than a battery at 3L/min.  I was using 10 a week.  I did have a lot of trouble getting LOX and really went to enormous lengths but it was worth it.

      My setup is a stationary Philips OC for sleeping or around the house if I need it.  I bought a POC on Ebay and use it for air travel (Not right now, of course).  I get a reservoir delivery of LOX about every 4 weeks.  I fill a portable LOX tank, a Helios 850 Marathon (5.8# when full).  Which lasts all day even playing 1-2 hours table tennis with continuous flow.  If I’m just sitting or driving I can turn the flow down to D2.  D = Demand, 2=2L.  Important D is not the same as “pulse” though it works the same way.  D really does deliver the equivalent of the number  of liters indicated with every inhalation.  Complicated eh?  You can find all the available portable LOX cylinders on the net.  Helios is made by Caire  see Caireinc.com

      Paul, this shows how dependent we are our suppliers.  What a sinking feeling when you can’t to a decision maker.

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