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    • #27507
      Marianne
      Participant

      Recent PFT and 6 minute walk tests suggest I might need to begin supplemental oxygen.  There is a moderate reduction in diffusing capacity, including when corrected for hemoglobin (it was 14.8 which is good).  Walk distance normal.  Significant O2 desaturation during exercise on room air (86%).  Desaturation on room air meets criteria for home oxygen.  Elevated diastolic blood pressure with exercise.  Need some information on POC and various types of oxygen others are using.  I was diagnosed with IPF March 2019 so it has been almost 2 years.  FVC is down from 6 months ago.  FEV1 is stable.  TLC(Pleth) is down and DLC is way down.  Any information would be appreciated.  These are notes from 2 pulmonary care doctors but not my doctor.  I assume he has either not read these yet or wants to discuss in person next week.

      Marianne

       

       

    • #27514
      Wendy Dirks
      Participant

      Hi, Marianne –

      I began using supplemental oxygen about a year ago, using gas cylinders at 2 lpm. It wasn’t enough and I was reassessed and changed to 4 lpm. A small cylinder lasted about an hour. I began getting physiotherapy, taking online yoga zoom classes and getting fitter which meant I began using more and more oxygen, running out quickly, and ordering more. My oxygen supplier rang the oxygen team at the hospital and they decided I should switch to liquid oxygen. Once a week I get a huge tank delivered to the house. The portable flask lasts about 2.5 hours at 4 lpm, which is much better, but I’m still going through it quickly. I’m currently in a bit of a fight with the oxygen team. The problem with liquid oxygen is that the flask has to warm up after I have used it up – for 10 minutes or so. Then once it is filled, it has to settle for about 10 more minutes until it is ready to use. It’s quite a bit “fiddlier” than the gas. It’s annoying because when I run out, I have to stop what I’m doing and wait for the oxygen to settle before I can start using it again. The supplier suggested I get a second flask and have one filled and ready to go when the one I’m using is empty, but the oxygen team at the hospital want me to get a bigger (and much heavier) flask that lasts 4 hours instead. So that’s some of the ups and downs of my oxygen experience.

      Let me say that getting supplemental oxygen completely changed my life. I was at the point that I couldn’t walk from one room to the next in my house without having to sit down and catch my breath. With the liquid oxygen, I sometimes forget I’m even ill! I’m working slowly on increasing my fitness and activity levels. I also have a walker called a rollator. I put my flask under the seat and walk along pushing it. When I need to sit down and rest, I have a built in seat but as time is passing, I need to sit less and less. I am so grateful to be getting the oxygen I need that allows me to live as normal a life as possible. When I was first told I needed oxygen, it was a shock and I was depressed thinking it was a sign that my illness was progressing. Now, a year later, I’m grateful for it every single day.

      • #27537
        Neha
        Participant

        @marianne

        Hello Marianne, here is a link to an article which talks about supplemental oxygen devices that you may find helpful before you have that conversation with your doctor: https://pulmonaryfibrosisnow.org/2019/04/05/supplemental-oxygen-tanks-vs-concentrators/ Using supplemental oxygen will definitely allow you to be more active and do more. Good luck with your appointment. Neha

      • #27680
        Bill Kelly
        Participant

        Hey Wendy,
        Which “flask” are you using? Have you tried topping up your portable before it’s empty. I’ve been doing that for years with a Marathon 850 but I don’t use as much O2 as you.

        Best wishes,
        Bill

        • #27681
          Wendy Dirks
          Participant

          Hi, Bill – It’s the smaller of the two sizes. I haven’t tried topping it up before it’s empty. It’s usually really iced up and I’m a bit nervous about trying it. I’m getting a delivery tomorrow and I’ll ask the technician about it. Thanks!

        • #28252
          Bill Kelly
          Participant

          @wendy-dirks

          You should wipe the filler on the reservoir and the flask with a dry cloth before you fill it.  Your “flask” must have a name on it.  Look it up on the net.  If you need 4L/min then LOX is your best solution.  See if you can do with less by turning it to 3L and checking your oximeter.  Etc.,etc.

          I have found that with ipf, God helps those who help themselves.

          Earl,

          OxyGoNext says that the unit has 6 settings: 1 to 6

          NOT 1L to 6L.

          The max flow at setting 6 is 1.26 L/min see https://oxygo.life/oxygo-next

          Unfortunately people on this thread are always finding magical Portable Oxygen Concentrators that produce vast amounts of O2 for them.  They are like the fountain of eternal youth – mythical.

          There are no POCs on the market that produce more than 3L/min continuous flow.  When one arrives please let me know.

          General Rules for POCs:  The smaller, lighter the POC the less the capacity.  batteries are heavy.

          The higher your flow the faster the battery runs down.

           

           

      • #28364
        Sam Gilmore
        Participant

        I have been diagnosed IPF 3 years ago. Using oxygen for about 2 years I’m on 7-24 now set at 5 I’m at 95–98 resting but as soon as I get up and walk 5ft it drops to 65-75  I have. Difficulty moving from room to room. I am looking into getting a Motorized Chair so I can get around. I know I don’t have to much time left I am making of it the best I can. My wife and 3 sons are so. Helpful not sure what I would do without them. You all take care and be safe

      • #28666
        Earl Robinson
        Participant

        Marianne,

        I have been on O2  24/7  for over a year @ 8LPM during the day and 6L at night when sleeping.  I am using Oxygen Concentrators that run 24/7 and the cost is mostly covered by my insurance.  I occasionally use a tank when away from home but most of the time I use a battery operated Concentrator that pulses the O2 so the supply is diminished and is not enough for any activity but works when sitting, like driving the car, etc.  I would encourage you to explore the Concentrator option. Cost for all equipment is under $25/month.  Earl

         

        • #28667
          Sam Gilmore
          Participant

          I am on oxygen 24-7 I have a home concentrator and a portable concentrator both work very well. How ever I do get brethless when I get active it will go from 98 at rest to 75-85 when active. So I dont get the excursive I need.

    • #27517
      Susan Howitt
      Participant

      Hello Marianne

      Have you got CPFE?    Diagnosed in 2014 and on O2 for the last three years. I started off on a back pack oxygen recouperater (sorry can’t think of the English word)  they go up to a maximum of 3litres per minute but they can be plugged in to the electric current anywhere to recharge, including the car.  The problem with them is that,  with Covid about, they suck in air from around and haven’t got filters fine enough to filter germs !!! Now on liquid O2, and like Wendy I have the huge cylinders delivered weekly (3) plus 2 smaller ones, plus a smaller one for the car.  I have back packs, one bigger one (pretty heavy when full but you soon get used to it) and a smaller one (carry) that I fill, yes with mine you have to wait 15 minutes before using too,  and depending on ones usage it can last up to 5/6 hours, sadly in my case even on 7 it is not enough if I have to walk more than 10 paces and I have to use a wheelchair when out and about.  Only trouble with these back packs is that when filled and not used the O2 slowly leaks out.

      I agree keeping fit is everything, I am not supposed to be here but having to exercise my dogs kept me going for 2 1/2 years longer than predicted with all my extra complications

      Take care keep safe.

    • #27518
      Marianne
      Participant

      Wendy and Susan –

      Thanks for your responses.  Susan in answer to your question I was diagnosed with IPF May 2019 so it has been almost 2 years.  All my PFT tests are back but no emails from my pulmonary doctor yet so I am assuming we will discuss oxygen on my next visit – next week.  I really did not want to add oxygen but I am pretty sure that is where I am headed.  Up until now my PFT have been staying steady.  I enjoy getting out and about and hope adding oxygen will not change my schedule.  I do notice that I am getting more tired earlier in the day.  I am pretty sure my oxygen levels are fluctuating alot – most in low 90’s but dropping into mid 80’s with exercise.  I have gotten out of the exercise habit with the winter weather (I live in Ohio and we have had quite a bit of cold and snow).  I have not gone to the gym because of Covid.  I need to get back in the habit of exercise as I hope it will make me feel better.  When you went on oxygen did you use it just occasionally or 24/7.  I have read up on liquid oxygen.  Not sure if Medicare will pay for it.  From what I have read Medicare pays 80% for rental of POC or oxygen but not sure exactly what is covered.  Guess I need to call and verify with them.  I also have supplemental insurance.

      Did visit the local Zoo yesterday with my son and grandson.  I did ok but was tired after walking around for 1 1/2 hours.

      Have a great day.  Take care and be kind to yourself.

      Marianne

      • #27519
        Wendy Dirks
        Participant

        Hi, Marianne – When I started on oxygen I only used it during exertion – my pulmonary rehab class and gardening. However, as lockdown progressed here, my lung function declined quite rapidly and my oxygen sats were going down into the 70s. I started on MMF (Cellcept) and increased oxygen around the same time – 4/5 months ago and by Christmas both had made a huge difference and I was able to be much more active. I now use oxygen most of the time during the day unless I am sitting down for some time – on the computer, eating a meal, reading a book, etc. It makes a huge difference to my quality of life. I understand why you are reluctant to add oxygen – I think most of us are frightened by the implications. But honestly, it means I can do so much more than I used to. I am not getting out at all – here in England, I am considered “extremely clinically vulnerable” to covid-19 and therefore have been in lockdown for a year now. I’ve only been able to go out for medical appointments! I’m hoping the warmer weather, the vaccination programme and the subsequent end of lockdown will mean I will be getting out and about more in the future. Best wishes, Wendy

    • #27520
      Marianne
      Participant

      Wendy –

      Thanks for your reply.  I have gotten my head around the fact that we will probably be adding oxygen to my treatment.  I know when my pulmonologist and I discussed this early on.  He told me that we would add to add oxygen at some time and he would rather do it sooner than later.  I traveled to England years ago when my children were quite small.  We visited with friends who live in Stourbridge West Midlands and they took us to many places we would otherwise not have seen.  Would love to go back someday.  We even got saw Prince William and Harry when they were children.  Granted it was from a boat and they were far away on a balcony.  We had a great time.

      Marianne

    • #27522
      Susan Howitt
      Participant

      Hi Marianne

      I am English but live permanently in Burgundy France.   I am unfortunately I am at stage 4 following the latest exacerbation, and 27/7 O2, don’t need much when sitting or sleeping, 4lts, but if I move even on max which at the moment is 6,  I drop to 55 blood oxy, NOT good so have to have extra bottle that I can wheel around as a back up, having a Y junction on Tuesday so that I can hook up two big static cylinders together  with 10 metre nose hose. To go out I am in a wheelchair since last week as no back pack or portable bottle goes high enough.

      Luckily for me here I am on 100% with the ministry of health and don’t pay a penny not even in insurance, everything is free, I know I am so lucky as no argument at all , I get anything I want and need. Was worried Brexit might make a difference but no, as I have been here 31 years even though not naturalised I am classed as a permanent resident with all the cards and papers needed.

      Will pay you to have a finger oximeter so that you can stop and check before you get too low in O2

      I only asked about CPFE  because your FEV stats stay level and your DLC has gone way down.

      Hi  Marianne

      I was offered CellCept last October which I thought was far too late and with Covid about didn’t want to not have any immunity at all even though I live in mini mountains in a teeny weeny hamlet of 10 houses.

      Take care all,  Sue

    • #27525

      Hi Marianne,

      Let us know how that conversation goes with your doctor. I remember the idea of being put on supplemental oxygen and it was overwhelming, but I’ve learnt a lot, as have many others on this forum likely and we’re here to help you if you have any questions!
      Char.

    • #27528
      Marianne
      Participant

      Charlene –

      I have not yet heard from my doctor.  The hospital system I am in has a function called My Chart.  All appointments and test results are posted there.  Tests results are usually released before my doctor sees them but another doctor has reviewed them.  A few days later my doctor usually sends me an email telling me that my results are good.  The test results were back on Feb. 23 and no email from my doctor.  I am assuming he wants to explain the results in person as I have an appointment on Friday, March 5.  I have had some intestinal issues over the past 2 months but they have resolved.  I will let you know after I met with the doctor on Friday.  Thanks for the note.

      Hope you are doing well.

      Marianne

       

       

      • #27572

        Thanks for circling back to let us know @marianne. I’ll be thinking of you on Friday and hope the appointment goes as well as possible. Please keep us posted if you feel up to it!
        Take care,
        Charlene.

    • #27530
      Marianne
      Participant

      Hi everyone –

      I ventured out to the gym today to test out needing oxygen when I work out.  I did a bicycle for 10 minutes.  Started at 94 O2 level and tested every 2 minutes.  At 2 minutes and 4 minutes I was at 92 after 6 minutes of exercise I dropped to 89.  I waited a bit for levels to come back up and continued to exercise for 10 minutes with a 3 minute cool down.  I finished at 90.   Then moved to elipitical machine for 10 minutes with 3 minute cool down.  Started out at 94 by 6 minutes I had dropped to 86.  Waited a bit and continued on.  At end of exercise I was at 90.  This tells me that I am going to need to add oxygen to safely exercise.

      Beautiful sunny weather here today in Ohio.  Hope you are all have a good day and able to get outside for a little bit.

      Overnight oxygen levels stayed in the 90’s last night.  Yeah.

      Take care.

      Marianne

    • #27550

      Hi @marianne

      Thanks for sharing this with us and kudos to you for exercising — I know it isn’t easy with this cruel disease! I’m so glad you’re monitoring your saturations while working out, this is important to ensure your safety. Keep up the great work and keep in touch 🙂
      Charlene.

    • #27593
      Marianne
      Participant

      Hi Everyone –

      Results of discussion today with pulmonary doctor.  My pulmonologist and I jointly decided it is time to add supplemental oxygen.  I took a walk test to determine the amount of oxygen necessary.  I am going to start on 2 liters of oxygen when I exercise.  He wrote the orders and sent them to the oxygen supply company.  I believe I will be a POC.  I asked for liquid oxygen if I need oxygen at night but Medicare will not pay for it because it is more expensive than gas cylinders.  Pulmonologist is very concerned about my DLCO numbers as they range from 55 to 75 and 6 months ago they were 69 to 115.  He wants to see if my lungs are affecting my heart so I am schedule for an echocardiogram of my heart on Monday.  I assume he will either call me or send an email with the results for that test.  I return to pulmonary in 6 months.  He wants to rule out pulmonary hypertension.  That’s all I know right now.

      Have a great weekend.

      Marianne

      • #27604
        Wendy Dirks
        Participant

        Hi, Marianne – Just to offer a bit of reassurance, I had an echocardiogram last week. When my consultant told me she was ordering one, I had a moment of panic, thinking that something must be wrong with my heart, but she reassured me that this is just standard practice for people with lung disease. It’s just their way of taking good care of us. Best wishes, Wendy

      • #27609

        Hi @marianne,

        Thank you so much for circling back to let us know how your appointment went. I was thinking of you! Being told you need supplemental oxygen is hard to digest, so I’m glad to hear that decision was made together with you and the doctor. It’s the same here as well unfortunately re: liquid oxygen… it’s very hard to get, and sounds like that trend is similar in all areas of the world right now. Cylinders and POCs have been what I’ve used though, and I haven’t experienced too many limitations, including travel (pre-COVID), if that helps.

        Glad to hear the pulmonologist is wanting to investigate the DLCO by ordering an echo. I hope that goes well! It is common, unfortunately, for people with lung diseases to also have cardiac trouble so I’m glad he’s on top of it.

        Take good care and thanks for the update!
        Char.

    • #27598
      Julie Grace
      Participant

      Has anyone heard of a Life2000 Ventilator? Our Pulmonarligist recommended to try it rather then a higher oxygen concentrator.

      • #27606

        Hi @julejoy5aol-com

        I haven’t heard of this type of ventilator before, but curious if others have. If anyone has experience with the Life2000 Ventilator, please let us know.

    • #27601
      Bob
      Participant

      Just getting to grips with the liquid oxygen flask, but still want to travel around the UK. I need 1 litre per minute at night and 3 litres when exercising in the day.

      Looking at the Inogen one G5 Battery powered concentrator. Expensive, but it seems to be light, delivers the oxygen for long periods and, unlike the Liquid oxygen, can be recharged anywhere from the mains in a hotel or the car.

      It’s American in origin, so does anyone have any knowledge of this equipment that would help me make a decision please?

       

      Bob Osborne

       

       

       

       

      • #27605
        Wendy Dirks
        Participant

        Hi, Bob – I’d like to know the answer to this as well. I’m having a major battle with the local community oxygen team who refuse to give me a second flask so I can have one ready to go when the one I’m using runs out. They don’t believe I can be active enough at home to need one and it’s infuriating. Once we get out of shielding and lockdown, I’d like to be able to get out and about more too! We looked at concentrators but they are quite expensive. I’ll be interested to follow this discussion. Best wishes, Wendy

      • #27682
        Bill Kelly
        Participant

        Bob
        I assume you mean continuous flow when you say you need 3L/Min for exercise? With POCs it is a case of buyer beware. Many of the salesmen will tell you anything to make a sale. There is an enormous profit in these and in the batteries. The 6 settings on the G5 don’t mean a thing unless you know what they refer to. Will a G5 even run in continuous mode? The stuff on the net is very coy about this. My doctor told me not to sleep without continuous oxygen – not pulse.
        Your car will probably charge a POC but may not run it if you need a high flow. You have to have the alternator modified to give more current.
        Only much larger POCs will give you 3L/Min continuous.
        Find the User Manual on the net and go to where it tells you about maximum flows. At top setting on the G5 it can only produce 1260mL/Min and not continuously. That’s a fraction over 1.25L (mL is a thousandth of a liter. If you can manage on this you are ok but the battery won’t last long.
        Here’s a link to all the small Inogen user Manuals https://www.inogen.com/support/inogen-manuals/
        Bill

      • #27890
        jim nox
        Participant

        Hi @bob-osborne

        For whatever it is worth, I have been using the Inogen POC G5 for about a year. Bought it with 2 regular and 1 longer term batteries. Have been pretty well satisfied and use it periodically frequently (lately nearly constantly while moving) and all night at a minimum 1ltr setting in case of breath issues when dreaming. It runs all night plugged in to wall power and simultaneously charges the battery that is inserted. All things considered, I find it to be a pretty darned marvelous and friendly device although I initially hated the idea of wearing it in public. Now it is my best friend and great enabler as I live and do light work in my Texas ranch life.  Amazing how we adapt.

        Good luck…….

        Jimnox

        • #29044
          Harletta Carathel
          Participant

          Bob I am a Texas woman and live on a farm/ranch.  I am having a hard time wearing oxygen in public too.   Wish someone would come up with a less visible oxygen resource,   I have a small inogen for things like grocery shopping but use a respertonics in a backpack for working outside.

        • #29045
          Bill Kelly
          Participant

          Harletta,
          Are you aware that there are eye-glasses that can be attached to an O supply and are almost undetectable? They are called OXY-View. I wore them before I had my cataracts done but now I don’t need glasses,

          Bill

    • #27611
      Marianne
      Participant

      Charlene & Wendy –

      Thanks for the replies.  I know my doctor is very proactive.  Pretty sure he is concerned because the day I took the 6 minute walk test my blood pressure was high to start and went much higher at the end.  I have blood pressure issues but take medicine.  Yesterday appointment my BP was 122/70.  Day of test it was 168/78 and ended up at 198/91.  My blood pressure is never that out of control.

      Marianne

    • #27612

      Hi Marianne,

      I’m so glad your doctor in being proactive – that is so refreshing to hear, as that isn’t always the case. Goodluck on Monday, I hope you’re able to get some answers! 🙂
      Char.

    • #27613
      Marianne
      Participant

      Hi Bob –

      Reviews on Imogene are very favorable.  I am in the States and have heard that under Medicare they will not pay for the G5.  They will pay for the G3 which is an older and heavier model.  Not sure what the supplier I picked offers yet.  Hopefully will know next week and be able to start on oxygen soon.

      Marianne

    • #27614
      Marianne
      Participant

      Hi Julie –

      I am not familiar with the Life2000 Ventilator but their web site makes it sound pretty good.  Please let us know of your decision and any pros and cons on your choice.

       

      Marianne

    • #27618
      Susan Howitt
      Participant

      Hi Bob

       

      Dear Bob

      I had 2 Inogen  concentrators one for the home and one back pack and was very very pleased with it but they only go up to a maximum of 3 litres a minute, as you say can be plugged in anywhere but please be aware that it has no filters re viruses etc so you breathe in anything that is in the air around you, scary in these Covid times, I am much more at ease with my liquid oxygen back pack but it has severe disadvantages that you can only refill it at home from a huge liquid O2 tank.   I am just about to be issued with a  Caire *stroller*  liquid O2that goes up to 17litres a minute, I now need 12lts

      Take care all  Sue

    • #27624
      Julie Grace
      Participant

      Regarding the Inogen, we were satisfied, have the G3. There are 2 screen filters that should be cleaned 1x wkly & 2 columns that act like filters. The columns need to be replaced 1x yearly & cost $100.00 for the pair. You can purchase on Inogen site or through Amazon.

    • #27625
      Julie Grace
      Participant

      Regarding the Life2000 Ventilator, we were disappointed with the results. We felt that it didn’t make enough of a difference in our situation. My husband has IPF, perhaps it would work better for someone with COPD. It didn’t recuperate my husband any faster once he depleted his oxygen while being active. The website is respiratorycare.hill-rom.com/Life2000 if anyone wants to research it.

    • #27629
      Randy
      Participant

      Good morning everyone. Was reading all the postings this morning and thought I would add my 2 cents worth in. As Charlene knows, I was diagnosed with IPF almost a year ago now. I have been on oxygen since then. If I am just setting around watching tv, on the computer, walking around the house or car riding, I am fine on #5 on the concentrator. Doing anything, it has to be at least 6 or 7. The only way to get that is to put 2 machines together. Then things get hot in the room they are in and you can watch the electric meter go around. I bought a Ingen last August. It is the lastest that goes to 6, supposedly. I us it for car trips and doing things outside. I have to stop after about 10 minutes will working outside because the pulse oxygen just won’t keep up and it is heavy hanging around you neck. With the battery it drags your head down when you bend over. I don’t like it for that reason. Heart trouble? I have afib and cad. So I have double the problems. I take my finger blood pressure and oxygen level at least twice a day. My oxygen is usually always in the 90’s but due to the afib, my pulse will jump all over the place. Anywhere from 40 to 140. So, I have to really  watch what I do.

      Well, I think I’ll close for now and let everyone get back to what they where doing. Have a great day and looking forward to more reading from you all. Randy

    • #27646
      Jenny
      Participant

      Something I have learned recently,

      Make a plan ahead of time for how you will get more oxygen quickly when needed. With Covid it may not be as readily available as you would want.  Make sure to not struggle too much as I’m certain (though not a doctor) this exacerbates the entire process. Have and use more oxygen when struggling. Make sure you balance the fear of covid (no doubt real) and seeing your family. Love to all with this disease.

    • #27647
      Marianne
      Participant

      Hi Everyone –

      I appreciate all your helpful responses.  Today I talked to my oxygen supply company.  They are delivering my oxygen tomorrow – a POC and a concentrator for the house.  Right now I am to use 2 liters upon when exercising and on long walks.  I am being tested next week to see if I require oxygen at night.  Right now the doctor does not think I will need it at night.  My echo and bubble tests are back.  I haven’t yet talked to my doctor but it looks like most of functions are normal.  Couple notes from cardiologist – my RVSP cannot be estimated.  Also unable to assess pulmonary artery and pulmonary artery not well visualized.  Pulmonary artery systolic pressure (PASP) unable to be estimated.  Poor tricuspid regurgitation jet may not accurately reflect right ventricular systolic pressure.  Trace regurgitation in tricuspid valve and in pulmonic valve.  Not sure what this means.  Have a Arterial Blood Gas test scheduled for September.

      Marianne

      • #27683
        Bill Kelly
        Participant

        Hey Marianne
        Did they tell you how long you have to say you are satisfied or not? It used to be 3 months. Then it’s difficult to change. Usually it’s the POC that’s the problem. Take your O2 level while you are active and make sure you are getting enough. You can buy an oximeter on Amazon and check it for accuracy against your doctor’s,

        Good Luck
        Bill

    • #27651
      Robert B
      Participant

      In the 1990’s I wasn’t getting enough oxygen and it caused my blood to thicken. I had to have a phlebotomy every 2 months for over 5 years. My blood was so thick, it was hard to function because I had no energy and my head hurt really bad. In 2003, a new doctor prescribed supplemental oxygen. I started at 2 lt and then went to 3 a few years later and took disability. I’ve been on supplemental oxygen for 18 years. I use liquid oxygen. I get winded but I’m still active, and even play golf with a Helios on a belt case.  I am fortunate to have been sick for so long and can still function. I can do much of what I want to if I want to bad  enough. Bobby

      • #27664

        Wow, thank you for sharing your experience with us Bobby. I had no idea that being under-oxygenated could cause someone’s blood to thicken. I’m really sorry this was your experience, but I do appreciate you sharing. I’m so glad you have the oxygen you need now, and are able to continue doing things that bring you joy. Take care and stay well!
        Char.

    • #27695
      Marianne
      Participant

      Hi Everyone –

      They did not tell me how long I had to see if I was satisfied with the oxygen company.  They finally delivered my oxygen around 6 pm Wednesday night.  Unfortunately, they did not deliver what was ordered.  They were to deliver a POC.  What I got was 1 2 ft. gas cylinder of oxygen and one large in home condenser with a humidifer.  I informed my doctor what I received.  He personally called the oxygen supplier and requested a POC because right now I am only to use oxygen on exertion – while exercising and on long walks.  Supplier said they always start with gas cylinder and see how much oxygen the person needs.  Then if they feel it is necessary they will submit the necessary paperwork to an different division for approval for a POC.  My doctor was not happy with that answer.  He finally convinced them that I need a POC.  They submitted the paperwork yesterday to start the approval process.  Doctor also ordered smaller portable tanks of oxygen and a conserver to fill the tanks.  Doctor’s office is also ordering a oxyimeter pendent which saves on oxygen used.  Set at 2 liters – you are actually using .5 liter but if I understand it correctly still getting 2 liters.  Not sure how this works.

      My echo did not show any of the pulmonary artery pressures which pulmonologist wanted to see.  He will confer with a cardiologist and if they feel it is necessary I will have a right heart cath to determine the pressure.  He is concerned about pulmonary hypertension since my DLCO numbers too such a drastic drop.  Next week I will wear a monitor overnight to evaluate if I need oxygen at night.  In September I will have arterial blood gas test to see how much oxygen is in my blood.  That’s the latest.

      I appreciate all the replies.

      Have a great weekend everyone.

      Marianne

      P.S. Had my first contact with a local pulmonary support group.  It was a Zoom Meeting through The Ohio State University – where I doctor.  My pulmonologist was the featured speaker this month.  Subject was IPF, Oxygen and Pulmonary Hypertension.  It was an excellent presentation.

      • #27706

        Hi @marianne

        Thank you for the update! Unfortunately, hearing that oxygen suppliers delivered the wrong item is something I’ve heard several times. Nothing against them, but it sounds like it happens often so I’m glad your doctor was able to advocate and get you a POC. For the little tanks you mentioned you’re getting, I enjoy having those on my back. You can buy a cheap oxygen backpack on Amazon for the D-sized tanks. Not sure if this helps 🙂

        Glad the pulmonary pressures were okay per your echo. If you feel up to letting us know if your doctor recommends the right-sided heart cath, we’d appreciate it. I know a few people on the forum are trying to figure out what is causing a drop in their DLCO as well.

        I’m really glad to hear you were able to attend a virtual support group and that it went well. Great to hear! Stay well and take good care. Enjoy your weekend.
        Char.

    • #27697
      Neha
      Participant

      Hello Marianne, it seems like your doctor is advocating for what you need, which is great. Are you able to share a recording of the presentation, if you have it? It would be great information to learn about and share.

      Thank you so much and have a great weekend.

      Warm regards,

      Neha

    • #27698
      Marianne
      Participant

      Neha –

      Hi – I will have to check with my doctor and see if he will give me permission to share his presentation.  I will let you know.

      Have a great weekend.

      Marianne

      P.S.  There were 11 people in the Zoom meeting – 4 pulmonary doctors from The Ohio State University and 2 other staff people from pulmonary/critical care department.  So 5 people in the meeting were patients.  Not sure how many patients usually attend as this is first meeting I have attended.  They usually meet quarterly in person for an hour then have lunch together but because of Covid they presently meet by Zoom.

    • #27720
      Marianne
      Participant

      Hi everyone –

      Update from my pulmonary doctor.  He said he will do calculations from my PFT to correlate to RVSP and will get back to me if he feels I need to have a right heart cath at this time.  I am hoping I can avoid this procedure for now.  I am still adjusting to wearing the oxygen when on long walks.  Yesterday I walked .95 mile which took me 30 minutes.  Today I was only able to walk for 20 minutes.  I was really tried after walking 10 minutes but I stayed with it for 20 minutes.  I hope as I get adjusted to the oxygen I will be able to walk 45 minutes to an hour at a time.  Back in the fall before oxygen therapy I could easily walk for an hour.  Not so easy with oxygen.  I am still waiting to hear if I will be a POC from the oxygen supply company.  Hope everyone had a great weekend.

      Marianne

    • #27761
      Marianne
      Participant

      Hi everyone –

      I did an overnight oxygen test.  For now, I don’t need to add oxygen at night but doctor told me I was very close to needing it at night.  I know my numbers dropped into the 80’s overnight but came back up before 5 minutes.  My understanding is if your numbers drop below 89 and stay there for 5 minutes, then supplemental oxygen is needed at night.  Beautiful weather here yesterday and went for a long walk outside with oxygen.  According to my oximeter my oxygen levels were all over the place from 85 to 95.  Not sure if I need more oxygen than doctor prescribed.  I am going to order a couple new oximeters today from Amazon.

      Also coughing more and my voice is very hoarse – with be acid reflux.  Have a hoarse voice about once a week right now.

      Hope all is well with everyone.

      Marianne

    • #27783

      Hi @marianne,

      Thanks so much for this update, and glad to hear your doctor doesn’t feel you need 02 at night yet. I hope that remains for a long time for you 🙂 Kudos to you for going walking in this nice weather, not as easy as one might think it is with supplemental 02. Keep an eye on those saturations while you’re walking and make sure to advocate to your doctor if they are too low. Take good care and stay safe!
      Char.

    • #27806
      Marianne
      Participant

      Charlene –

      Thanks for the reply.  I notice I am getting more short of breath when not doing much at all.  I have a feeling that oxygen at night and perhaps 24/7 is in the not too distant future.  I have a grandson who weighs around 27-30 lbs.  I get very short of breath if I carry him upstairs to his bedroom.  I visited with him and my son today.  I tool my oxygen along but did not use it.  My oxygen levels dropped to 88 when I wasn’t doing much of anything except playing with my grandson.  I did not go on a walk today as visited with my grandson and also stopped .by for a visit with my friend and former boss.  We worked together for 34+ years.  I had not seen him or his new office since Dec. 2019.  We had a nice visit but I was tired when I got home.  I find I have more energy in the morning than later in the day.  My last walk outside my oxygen levels were all over the place.  According to my oximeter I was dropping into the mid 80’s with oxygen.  I am ordering a new oximeter to see if my current one is defective.  Have a great weekend.

      Marianne

      • #27814
        Susan Howitt
        Participant

        Hi Marianne

         

        My oximeter was checked by the hospital during a recent stay and it was spot on this their electronic one, I do know that my other meter is a few ° out so rely on my AVAX one, my readings are all over the place depending what I am doing or have done, takes a minute or two for my levels to go done and about 5 to 10 minutes to get back up again depending on how low I get, lowest, verified, reading has been 55 !!

        I am going to get another Avax meter just in case his one goes.

         

        Take care   Sue

         

      • #27821

        Thanks for sharing this update with us @marianne.

        I hope you can continue to manage the shortness of breath so you can spend time with your grandson. It is tough to manage, but hang in there and don’t be afraid to use that 02. I was so reluctant to it at first but it really did help me feel better physically: less tired, less short of breath, etc. Take good care and keep in touch!
        Char.

    • #27813
      Christie
      Participant

      Hey @marianne, oximeters can be pretty finicky, especially if you aren’t sitting still, or are cold. I used to be an MA at a pain clinic and we had a patient that regularly got flagged for pulmonary/cardiac concerns because they were severely underweight and could never get warm. Their O2 readings were perfect once we could warm up their hands but they would read in the high 60s sometimes just because of the poor circulation to the fingers. Just thought I would mention it since it is winter.. I don’t know where you live, but if you’re checking O2 while out in the cold or right after coming in from a walk, that might be a factor in wild readings.

    • #27815
      Marianne
      Participant

      Susan and Christie –

      Thanks for the information on oximeters.  I live in Ohio – which is a bit cold in the winter.  The walk where I had the issues with the oxygen levels in the low to mid 80’s up to around 95 was on a warmer day around 60 degrees here so it was not the case of cold hands.  I am not underweight.  I actually need to lose some weight.  My oximeter is giving me swinging numbers while inside too.  I am going to purchase a new one on Amazon.  The Avax looks like it is not available in the US.  My oximeter which measures the same as the doctor’s.  I was told by a nurse at my pulmonary practice that oximeters can range 2-3 points in either direction.   I have a ZacURate oximeter.  I totally understand about the temperature.  I have gone on walks when temperatures were cooler and not been able to register my oxygen levels at all during the walk.  I have a feeling that it is not long before I am on oxygen at night and possibly 24/7.  Played with my grandson (15 months old) and oxygen levels dropped to 88.  I carried him upstairs to his bedroom to take a nap and I was winded.  I do not yet have a POC and did not feel like lugging a tank on wheels up the steps as well as my grandson.

      Have a great weekend.

      Marianne

    • #27816
      Marianne
      Participant

      Hi all –

      Any suggestions as to what to use to help with a dry nose?  I am not yet on oxygen at night.  I run a cool mist humidifer at night but still wake up with my nose very dry.  Doctor suggest KY Jelly and it seems to help a bit.  Have read somewhere that sesame seed oil is recommended.  Has any one tried it?  Saline mist nose spray?  I wear contacts and am wondering if oxygen use is going to dry out my eyes and I will not be able to continue to wear them.  I have worn them for many years and mine are a hard Boston lens.  Thanks for any suggestions.

      Marianne

      • #27820

        Hi @marianne

        Good question! A lot of people struggle with this, and I think have chatted about some solutions in the past on here if I remember correctly. Check out this thread, there might be some helpful information here: https://pulmonaryfibrosisnews.com/forums/forums/topic/skin-irritations-caused-oxygen-cannulas/

        Otherwise in the top right-hand side of the screen on the PF forums homepage there is a search bar. You could type in something like “oxygen dry nose” and see what comes up. I think there have been some good suggestions if I remember correctly 🙂
        Char.

    • #27819
      Susan Howitt
      Participant

      On oxygen I have a bubbler so until I went on really high out put  never had a problem.  Much to every ones horror I use a moisteriser (consisting of glycerine, parrafin and vaseline, prescribed by my doctor for my very dry skin caused by the scleroderma) up my nose now, silky smooth and works wonders for me, in the very tiniest of quantities. I know anything greasy is not recommended but I need to breathe and a dried out nose gets so bunged up I resorted to the O2 probes under my tongue one night just to be able to get O2 into me, very scary.

      I wpuld never use a spray as they are usually designed to clear a nose and the more you use them the more you need to use them, vicious circle in my humble opinion.

      Don’t think O2 will dry out your eyes unless you have an underlying condition that causes dry eyes, like scleroderma.

      Take care one and all

      PS Yes just found out the Avax oximeter is not available anywhere

       

    • #27906
      Bob
      Participant

      Many thanks for the information about the Inogen G5, particularly Jim and Bill.

      The posts on this section seem out of date order by the way.

      I now have the G5 delivered by an NHS supplier and am learning how to use it. It should certainly give me mobility.

       

      Bob Osborne

    • #27974
      Julie Grace
      Participant

      Thank you for the information on dry nose due to high oxygen concentrator. My husband also suffers with this & it makes breathing even more complex. He even gets frequent nose bleeds. He does use a nasal spray similar to Flonase & saline water spray. Will try some of the other suggestions in this forum.

    • #27975
      Susan Howitt
      Participant

      I get nose bleeds all the time, not gushers but nose bleeds each time I blow my nose.  I am on asprin protect agains blood clots so also get random unexplained bruises, predisolone causes these too.

    • #27979
      Marianne
      Participant

      Hi everyone –

      Update on oxygen levels.  I have been using supplemental oxygen 2L when exercising and on long walks.  Pretty sure I am going to have to start using it more as I am dropping my oxygen levels when taking a short walk, plus running short errands – like to the grocery, etc.  I am still having issues with my oxygen supply company not providing what my pulmonary doctor ordered.  I called and email my doctor this week to hopefully get the oxygen I need.  When the oxygen supplier delivered my oxygen on March 10 they gave me one skinny gas cylinder tank and it is almost empty.  From talking to people in my area on oxygen, the companies that supply supplemental oxygen don’t go out of their way to provide good service.  One person waited 9 months for a POC .  It seems like all these companies try to decide what they think the patient needs instead of what the doctor orders for the patient.  It is very frustrating.  But others I have talked to locally have gone through the same process.  Some of the local supplier do not provide oxygen to Medicare patients.  Is anyone else that is in he US, having problems getting the oxygen as prescribed?  I live in Ohio.

      Marianne

      • #27980
        Bill Kelly
        Participant

        Some – not all- O suppliers give you what they think they can get away with. You can find every Medicare supplier in your area by going to the Medicare site. Then call them and ask them if they supply what you are looking for. I suspect the base problem is Medicare not allowing an economic fee. It’s worse since they went to competitive bidding. They can bid as lo as they like and then refuse to supply it apparently.
        The tech who handles O prescriptions at my pulmonologist knew all the suppliers and sent my latest Rx to what he thought was the best and it’s really worked out.

        BTW if you call Medicare they will tell you how to negotiate their website but honestly it’s not hard.

        Best wishes
        Bill

    • #27981
      Marianne
      Participant

      @warlock

      Bill Kelly 0

      Thanks,  I did not know this fact.  I researched and it looks like there are only 2 companies in my area that charge the Medicare approved amount and accept assignment for oxygen costs).  One of them is on the list which my pulmonologist gave me .  I will check with them.

      Marianne

      • This reply was modified 3 months, 3 weeks ago by Charlene Marshall. Reason: tagging
    • #27985
      Christie
      Participant

      @marianne Has Charlene told you about the PF Association? They do work in the US to help get people the oxygen prescribed by their doctors. Sadly, it sounds like the problem you are experiencing with delivery might not be so uncommon. I think they have a great mission, but I suspect the organization might have been hit pretty hard by covid layoffs because I have reached out several times this year and not heard back. It might be worth giving it a try, though, as a patient your needs are more urgent than mine! https://www.pfassociation.org/

    • #27989

      Great suggestion @christie-patient.


      @marianne
      , more information on the Pulmonary Fibrosis Association can be found in this post here: https://pulmonaryfibrosisnews.com/forums/forums/topic/pulmonary-fibrosis-association-providing-02-to-patients-in-need/ in addition to the website Christie provided 🙂

    • #27993
      Marianne
      Participant

      Christie and Char –

      Thanks  for the information.  I did not realize that Pulmonary Fibrosis Association helped with oxygen.  That is great to know.  My problem isn’t insurance coverage as I have Medicare plus a Supplemental Policy.  The problem is that the oxygen company does not want to supply what the doctor prescribed.  It is just frustrating as the oxygen supplier seems to want to decide what the patient needs instead of filling the order as written by the doctor.  It will eventually all get worked out.  I have talked to a few people in the US who have had the same issue with the oxygen supply companies.  It doesn’t help that some of the local oxygen supply companies do not accept Medicare patients.  OK, that is my rant for the day.  Hope everyone has an excellent day.  Weather is beautiful again here in Ohio.

      Marianne

      • #27997
        Bill Kelly
        Participant

        Amazingly, Medicare can be helpful. Give them a try. Have the details of your “supplier” ready. They once telephoned a reluctant supplier for me with me on the line.

        Bill

      • #28024

        Hi @marianne,

        Thank you for the update, but so sorry you’re dealing with some difficulties by the oxygen company. Unfortunately, I’ve heard of this where I live too and sometimes it needs to be a very stern conversation about who has the credentials to prescribe 02, which inevitably ends with: not the oxygen supplier. Hopefully things are settling down there now and you’ve been able to get the 02 you need. Weather is beautiful here too, I’m so happy it is finally spring 🙂
        Take care,
        Char

    • #28060
      Sam Gilmore
      Participant

      I have been on Oxygen 24-7 for several months now. While I am at rest my level is 85-98 but if I get up to do anything it drops between 78-85 while on oxygen. I am considering getting a Mobility scooter to help me get around the house from room to room. Anyone have experience with the scooters? Than you Sam G

       

    • #28065
      Susan Howitt
      Participant

      Hi Sam

      I am in the same position as you, at rest I am up to 92 but the minute I move I drop to 75/69 at my lowest, I up my O2 intake sometimes up to 13 to be able to shower, sadly only twice a week as it takes so much out of me, I have stools scattered around the house (live on my own but my daughter comes in twice a day)  to be able to rest on whilst my O2 gets back to at least 90.  I walk as much as I can even if it is only 10/15 steps at a time, I feel I just have to keep my big muscles oxygenated otherwise I will be bed bound.  I have to use a wheelchair when my daughter takes me shopping, can’t even propel it myself, she has to push me. I am on 5lts at rest and up to 13 when I move,on O2 24/7 for 18 months or so now.

      Sorry no info on scooters my doors wouldn’t allow one any way.  Best of luck

    • #28188
      Marianne
      Participant

      Hi all –

      Most recent news concerning getting a POC from oxygen supplier. I got a telephone call on Monday 4-26-21 from oxygen supply company that they agreed with my pulmonary doctor that I “qualified” for a POC.  It would take 3-4 days to get one to me.  They will call back when they have a unit available.  So hopefully I will have a unit sometime this week.

      Hope everyone is having a good day.

      Marianne

    • #28227

      Hi @marianne

      Thank you for the update on your POC. Unbelievable that the oxygen supply company had to “agree” with the Pulmonary doctor that you would qualify for a POC – very frustrating. Fingers crossed you’ve received it and the adjustment to the device is going well. I use my POC most often, so if you have any questions, please don’t hesitate to reach out.
      Char.

    • #28240
      Marianne
      Participant

      Hi Char and everyone –

      Update. I was getting so frustrated as oxygen supply company was not returning my calls I just stopped by their office yesterday to get some answers.  The POC has been ordered but has not yet arrived.  It doesn’t appear that it has been shipped yet.  I talked to a supervisor and voiced my opinion that they needed to return customers phone calls.  Since I was basically out of oxygen they gave me a 6 pack of small tanks of oxygen.  They gave me a shoulder pouch to carry 1 canister over my shoulder.  So at least I now have some oxygen.  They first informed me that since I was not on oxygen 24/7 I did not qualify for a POC.  When they checked their records, they said I did qualify.  I am guessing my doctor wrote the prescription so I would qualify for the POC.  Apparently, in the US it is taking awhile to get the POCs to the oxygen supply companies.  They informed me that is not an item then keep in stock because it is too expensive.  Hope everyone has a great weekend.

      Marianne

      • #28266

        Hi @marianne,

        That is so brutal, I’m so sorry you’re having these struggles with the oxygen company and POCs. Unfortunately, I’ve heard of this happening often for patients and it’s not fair. POCs are expensive here too, I ended up just buying one out of pocket because I was so irritated dealing with insurance coverage, prescriptions, etc. I hope the 02 supply they gave you until one comes in will help sustain you. I know it’s exhausting but you’re being an incredible advocate for yourself, keep up the amazing work and let us know if we can help, even if its a “shoulder” to vent on. Thinking of you!
        Char.

    • #28241
      Susan Howitt
      Participant

      Hi Marianne

       

      I think that is awful that the O2 suppliers can decide if you do or don’t qualify even after a doctors note.  I had a POC long before I was on 24h O2, I now have 2 Pocs as my O2 needs are high and each POC goes up to 17 ltspm, the O2 company suggested I had 2 !!! so as not to be caught out by any longer than 2 hour visits.  I suppose I am luckier because the O2 company is state run.  Hope you get your POC soon

      All the best Sue

    • #28242
      Richard D.Gueard
      Participant

      Hello Everone,   I am new IPF .  What  is the average monthly cost for supplemental Oxygen?

    • #28244
      Earl Robinson
      Participant

      Hi there, I have been on supplemental O2 for over a year now. Diagnosed with IPF and PAH and using O2 concentrators when home @ 8L/M during the day and 6L/M at night. Have very little use of O2 tanks. When I’m sitting and driving I use a 6L/M pulse unit that works well.  It is an OxyGoNext unit.  I can’t imagine the hassle with tanks.  I have my air tubing from the concentrator hung up out of the way with some little homemade hangers that allow me to have a day set up and one for night when sleeping. Keep as active as you can be.

       

       

       

    • #28245
      Earl Robinson
      Participant

      @richardguerard

      Rich, my Anthem Blue Cross and Medicare cover most of the cost. My cost is less than $25 /mo.  I lease all the equipment. I do have 5 small O2 tanks here at the house for use when I need a constant flow of  O2 instead of the pulse flow from my POC.

      • This reply was modified 2 months, 3 weeks ago by Charlene Marshall. Reason: tagging
    • #28247
      Karen Martin
      Participant

      Marianne, in regards to your BP being erratic, perhaps it was your anxiety over doing the 6 minute walk test that raised it so much.  I think most people have heard of “white coat syndrome” where you are reacting to being seen by the doctor, worrying about what they will tell you about your diagnosis or having some sort of test done.   You might want to monitor it yourself at home under more normal circumstances.  I wish you luck on finding a company that will work with you about your tank needs.  I feel very lucky to have one that is very easy to work with here in VA.  It really means so much to get the help you need without a struggle.

    • #28268

      Hi, I am new to the forum and I have recently started on Oxygen, my prescription is for 2LPM as needed. First of all I am in Australia so our health system is probably a little different to others,but basically I was provided with a home concentrator but nothing portable.  I would like to get a POC so  that I can continue with my daily walks  and  I have been reading all the information on this forum and on the web plus I have talked to some providers  and am getting so confused. I have gotten conflicting information as to whether the small units would be sufficient for me or not.  Ideally I would like to get an Inogen 5 so was wondering if anyone would know if that would supply enough oxygen for my needs. Thank you very much , this forum has been a tremendous help to me and I do appreciate the kindness and support of everyone.. It means a lot.

      Elizabeth

       

    • #28269
      Susan Howitt
      Participant

      Hi Elizabeth

      I am in France so my supplies are vastly different to the USA as well.  I get what I want and what I need no problems, just have to ask.

      To my mind the bigger the portable concentrator the better as you can usually get further, bearing in mind that to my knowledge no concentrator seems to supply more than 3 ltrs no matter what number the dial says.  Ask for a back pack, I reasily got used to the weight as I had a double battery and could quite easily take my dogs 5kms then.

      Now I have two back packs that take liquid O2 filed from the huge cylingers at home, they both go up to 17 ltrs, need 2 in my wild and wooly area as everything is so far between.

      All the very best on your journey with this terrible disease.

       

      Sue

    • #28270
      Marianne
      Participant

      @lizzie

      Elizabeth –

      From what I understand most of POC go up to 4 or 5 liters.  There might be some newer units that go up to 6 liters.  In the US if you are on Medicare as primary insurance you can rent an older POC unit.  If you want a newer model, you must either rent it yourself or buy it outright.  They are great for walking and exercise but with the battery pack many POC units in the states are 5 to 7-8 lbs.  I was told that by one oxygen supplier in Ohio that person needed to be prescribed oxygen 24/7 to qualify for a POC.  I am not yet on oxygen 24/7 and I qualified for a unit.  I am not sure what brand unit I am getting until it arrives.  I am still waiting to hear back from oxygen company that it has arrived at their facility.  My oxygen supplier does not keep POC’s in stock because they are expensive and I assume many patients most go with the gas cylinders or oxygen.  My doctor prescribed the POC because I exercise at the gym and like to take long walks.  It is much more convenient that pulling a large tank of oxygen behind you on a cart.  I also have the smaller cylinders that are worn either on a backpack or a shoulder harness.   Hope this helps.

      I know someone from overseas recently purchased an Imogen 5 or 6 POC unit.

      Marianne

      • This reply was modified 2 months, 3 weeks ago by Charlene Marshall. Reason: tagging
    • #28271
      Marianne
      Participant

      Karen –

      Thanks for the note about BP.  I do monitor BP at home.  My BP is usually pretty good at home and at the doctor’s office.  Not sure why it was so high that day.  I did not know I was doing the 6 minute walk test until about 20 minutes before I did it.  Originally, my doctor was booked solid until the following month for the 6 MW test.  They had a few people cancel that morning so I was able to do the walk right behind my PFT and before my blood work.  I have blood work – liver panel – every 3 months to monitor my liver because of taking Ofev.  So far liver panels have been fine.  I have PFT and see my pulmonary doctor every 6 months.  Also, see my PC every 6 months instead of once a year.  Hope you are having a good day.

      Marianne

    • #28276
      Jill
      Participant

      Hi! We’re preparing to buy a 10 litre continuous flow concentrator since my husband needs to switch to liquid oxygen… the POC doesn’t give enough oxygen. Since insurance will only pay for one, we’ll use it for the liquid and his pulmonologist is writing a prescription so we can buy a continuous flow for home and use the liquid for errands, hiking etc. My question is does anyone have a 10 liter continuous that they recommend? I know many people use Inogen, but they only go up to five liters and he needs 10.

      And does anyone who owns one have any advice for maintenance, etc?  Thanks so much!

    • #28277
      Susan Howitt
      Participant

      Hi Jill

      I have ,  a Caire Hi-flow liquid content which go up to 15 ltrs , the other is a companion T P/N 775499-B, also up to 15 lts.

      At first the filling up is a bit of a chore, you have to really press down on the filler end and keep up the pressure whilst filling, I count to 20, release lever listen until the gurgling (filling, quick 10 count) stops, then pull down the lever, 20 again, until you big O2 cylinder puffs out a load of vapour, dial should idicate full.  Some of these machines use a sort of weight system to see when full, not easy to judge how long you have left, try and avoid these.  The only care I do is when back pack has been used and is empty, doesn’t hold its charge and slowly uses up what is left, I take off the bottom and allow the felt to dry out.  If you get one of the wretched ones that uses a sort of key system to hold the bottom on, don’t bother, just use tape each time as key is useless.

       

      Good luck in getting a really good one.  (Caire)

      Sue

    • #28279

      Marianne and Susan,

      Thank you so much for your replies, its great to have this forum to turn to.

      Cheers, Elizabeth

    • #28280
      Alejandro
      Participant

      HI, guys iam getting more hope with your comments.

       

      One question for you guys.

       

      Is liquid oxigen good?? Because i would like to get it for my mom. She has the normal oxigen that Last 2 hours. Potable.

       

    • #28281
      Alejandro
      Participant

      HI, guys iam getting more hope with your comments.

       

      One question for you guys.

       

      Is liquid oxigen good?? Because i would like to get it for my mom. She has the normal oxigen that Last 2 hours. Potable.

      Also,  my mom was at  hospital Last month, one of the nurses told us to buy llanten. It is plant that is good for the lungs. My mom has been talking it. She has felt a little better. I dont know if this plant in the US. something that you can Google it might work

       

      One huge for everyone from colombia

       

      • #28282
        Wendy Dirks
        Participant

        Hi, Alejandro –

        It’s difficult to answer the question of whether any particular form of oxygen is “good.” They are all good depending on the circumstances, in my experience. I began using oxygen cylinders and they met my needs at first when all I needed was oxygen for going out. But eventually I was using more and more oxygen and had to have deliveries 2x a week. I was switched over to liquid oxygen with a large tank and refillable flask. Liquid oxygen in the flask lasted a lot longer than in a similarly sized cylinder, but even the slightest mistake in filling the flask meant that it froze up and I had no oxygen at all. As my need for oxygen has increased, I have now switched over to a home oxygen concentrator (not portable) and I am using the liquid for going out. It gives me about 2.5 hours of oxygen at 4 litres per minute. That doesn’t allow me to go very far, but to be honest, I struggle to walk for more than 15 minutes or so at the moment, even with oxygen supplementation. I absolutely love the home oxygen concentrator – I turn it on in the morning and turn it off at night when I go to bed. I keep a full flask of liquid oxygen next to the bed in case I need to get up and go to the toilet or have a coughing fit, as using oxygen is the only thing that calms my coughing enough to sleep. I hope this helps!

        Best wishes,
        Wendy

        • #28284
          Richard D.Gueard
          Participant

          Hey Alejandro,   Does she drink Lianten tea or how is she using it.

          Thanks and Blessings

          Richard

    • #28289
      Jill
      Participant

      Sue and Wendy, thanks so much for taking the time to reply! I appreciate your time and information. I’ll look into the Caire Hi flow and see if it’ll meet my husband’s needs.

    • #28293
      Alejandro
      Participant

      Many thanks for your comments. It helps a lot.

      Richard.  This Plant is Hard to find and especially in this time of covid 19. But i finally found it. I
      I smash the plant to get the juice and give it to my mom. But the juice I got was little, so i went to the supermarket but it is Impossible to get it. So I went to a health food store and found it concentrated. My mom has Been feeling a little better. I think the best thing to do is to do tea, but you have to get the Plant. This is a little difficult to get. Try it is best advice.

      You can find more information in the Internet. I Just started Last week with my mom. My mom takes the llanten 3 times during Day. After breakfast, lunch, dinner

      I hope you get better and God can give us health to the people we love
      😊

      I used the Google translate. My english is not that good.

      • This reply was modified 2 months, 2 weeks ago by Christie. Reason: formatting visible
    • #28416
      Karen Martin
      Participant

      This is not really on the topic, but somewhat related so I hope someone might have the answer.  For those of us who use tanks and carry them in our vehicles, should there be some sort of warning posted on our car in case of an accident?  Since a spark mixed with the oxygen could result in a fire, that should be something police, firefighters or other rescue personnel would need to know, isn’t it?

      • #28417
        Susan Howitt
        Participant

        Hi

        I have only had to inform my insurance company, house & car, that I have large O2 tanks in the house+ 2 smaller ones and one small one permanently in the car. I do have a sign on the front door that Ii have O2 inside

        Take care one and all

         

        Sue

      • #28433
        Bill Kelly
        Participant

        The biggest danger in a car is if you have gaseous oxygen in metal cylinders and have an accident.  If the cylinder is not secured it could be thrown about the car as a projectile (like any steel cylinder).  Even if it didn’t hit anybody, the closure valve could be knocked off it and the escaping gas could throw it all over the car.  Think about a balloon when you release the nozzle and flies around the room.

        If there is a fire in the car the gas cylinder could be heated until the increase in pressure ruptures the cylinder – probably at the valve.  It would be like having a bomb in the car.  I suppose this is true for LOX also but LOX cylinders have escape valves.

        Be clear, oxygen itself is NOT inflammable – a spark cannot set it on fire.  However other flammable items will burn much more readily in oxygen but they must be burning already or set on fire by something else.  Oxygen will revive the dying embers of a fire, indeed that is the lab test for oxygen.

        If you are carrying O cylinders, make sure they are secured in the trunk.

        Bill

    • #28418
      Jill
      Participant

      Karen and Sue, thanks so much for posting on this subject… it never occurred to us that there might be an insurance  liability issue! Sue, did your rates go up with either insurance company when you told the you have oxygen in the house and car? And did they require the sign on the door?

      Thanks!

       

      • #28419
        Susan Howitt
        Participant

        Hi Jill

         

        No insurance increase on either my car or house (same insurance company) BUT I live in France and way out in the sticks so things might be a little more relaxed here   The sign on the door is NOT a requirement, just a polite warning in case of fire.

         

        Hope you can get things sorted without insurance hikes.  I just had the feeling that I ought to inform insurance in case the O2 negatted my insurance, cos as you know any insurance company will try and wriggle out of a big claim.

         

         

    • #28420
      Karen Martin
      Participant

      Sue and Jill, I never even thought about notifying my insurance company about the oxygen.  I was thinking more about informing rescue workers about my vehicle having oxygen aboard so if there was fire involved they would be aware of the potential for an explosion.  Guess I need to notify some other folks about this.  I also think I will call my local police and fire departments about a warning of some sort on my vehicle.  I certainly don’t recall the oxygen provider saying anything about this other than providing the warning signs to post on the doors of my house.

    • #28430
      Marianne
      Participant

      I have never thought of contacting my insurance agent regarding using oxygen.  I only use oxygen (a POC) when I am out and about.  At the present time I do not use oxygen at home during day or night.  I have a question about using oxygen when I am out and about.  My doctor prescribed 2 liters on exertion.  Recently when walking with 2 liters I have been dropping my oxygen to 88-89.  I sent an email to my doctor.  I am assuming that I need to up the amount of oxygen.  I am wondering if the high temperatures we are currently having in Ohio are affecting my oxygen levels.  Temperatures here are high 80’s and low 90’s.  I don’t do well when temperature is too hot or too cold.  Since I have only been using oxygen a short time I thought I would check to see if anyone else has experienced this problem.  Thanks much.

      Marianne

    • #28431
      Marianne
      Participant

      I was told to contact my electric company to inform then that I am using oxygen in case there is a power outage.  I know some people have generators in their homes.  My oxygen supply company gave me portable tanks of oxygen as a back up in case the power goes out.

      Marianne

    • #28434
      Karen Martin
      Participant

      When I called my electric company to tell them about my oxygen, they told me they base their jobs on priority and that isn’t necessarily one of them!  Nice, right?

      Bill, I know oxygen isn’t flammable, but I was thinking about some of the other things you mentioned.  I secure my tank by tying it to the shaft of the headrest in my car, but still have thought about sparks creating a problem.  You know, things like having to be cut out of a smashed vehicle.  Not a peasant thought.  Hence, my question about posting that info somewhere on the vehicle.

      Marianne, high and low temps do cause us to need more oxygen and it is always a good idea to slow down when your sats start to fall.  I think you should contact your doctor and see what advice you get about what lpm you should be using in this situation, too.

      • #28658
        Christie
        Participant

        @casey Karen, I can’t believe they said that! Don’t they realize people depend on oxygen to like, I don’t know, breathe!? Unacceptable. I would definitely call back and ask for a supervisor. And while you’re at it you can share with them an exercise that @charlene-marshall taught to a bunch of researchers to see what it feels like to have IPF. Correct me if I get this wrong, Char, but you have them plug their nose, put a straw in their mouth, and try to walk 100 meters breathing through the straw…? Then they can tell you how much of a priority their oxygen using clients are. Harumph!

        • #28684

          I am also truly sorry to hear of your experience @casey! The assumptions people make about 02 can be truly astounding. And yes, a really powerful exercise to help others realize how difficult it is to breathe with fibrotic lungs is called the “Straw Challenge”. Participants put a nose clip on and walk 100 meters as briskly as they can with a coffee straw/stir stick to breathe out of and see if they can manage it. I did this with a drug development company in California to raise awareness and all of them found it difficult to do. Their views on the use of 02 for PF patients and what we deal with really changed that day!

      • #28659
        Bill Kelly
        Participant

        Yes, I hadn’t thought of that.  Cutting torches can cause fires even without oxygen so an O rich atmosphere would do the trick.

    • #28442
      Susan Howitt
      Participant

      Oh Karen

      I cannot believe you got that sort of answer, hope you said something along the lines of, put a pillow tightly over your face and see how long you consider lack of O2 not a priority !!!!   grrrrrrr

       

       

    • #28443
      Karen Martin
      Participant

      Susan, believe it or not, your reply made me laugh!  That would have been the perfect response.  I will admit that I was so stunned that all I could do was hang up.  What I really need to do is call back and, if I get the same answer, ask to speak to the supervisor.  I think that with your comment in mind I could do that without too much difficulty.  Thanks for chiming in.  As my brother would say, you made my day!  🙂

      • #28663
        Susan Howitt
        Participant

        Happy to have made you smile, please do phone back now that you are not in such shock at their original answer.

    • #28665
      Karen Martin
      Participant

      Thank you Christie, Susan and Bill.  It is wonderful to have so many people respond so fast to a question like this.  I will definitely be calling both the electric company and the local police/fire/emergency departments about this.  I feel that I am properly “armed” now to present my/our case.

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