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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!

    • #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

    • #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

    • #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

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