• reshma-joshi

    Member
    April 23, 2020 at 12:55 pm

    Thank you everyone for sharing your oxygen supplement intakes. This has certainly clearify so many things we’re dealing with. These information will be so helpful for my Mom.

    Take care everyone. Stay safe and happy 🙂

    Warm regards,

    Reshma

  • bill-kelly

    Member
    April 23, 2020 at 3:08 pm

    Susan,

    I was confident I didn’t need O to sleep until I was tested overnight.  Yes, at one point in the night my O went down to 79% for about 40 minutes.(No subjective symptoms)  You just don’t breathe as deeply when you’re asleep.  It’s a pain but I put up with it.

    When I was 1st on O, it was for 7/24.  Then when my pulmonologist was away I saw his nurse-practitioner.  I had developed a slight but constant cough.  He listened to my lungs and read the last CT report.  He put me on a Z-pac and a short course of good old Prednisone.  Wow a big change for the better.  I had another CT and the “ground glass opacity” had disappeared.  In addition to the fibrosis I had had a bacterial infection and inflammation.  These were cleared up and I found I could sit and read or chat without O.  I found this myself because I always had an oximeter with me. Originally I couldn’t last more than 5 -10 minutes without O.  I still have an oximeter in the living room, my office and the car. I check O level constantly particularly when I’m doing anything physical.

    My fibrosis has now been stable for 3 years.  Stable enough that I can have a hip replacement under a local anesthetic next week if it’s allowed.

    Sounds good but I’ve now been diagnosed with lung cancer, so who knows how it will go.

    In spite of all this I feel ok and enjoy my life, except for the need for O and my hip.  I have found that fibrosis brings complications to any medical procedure even if your lungs are only peripherally involved.

    Stay well,

    Bill

  • susan-howitt

    Member
    April 23, 2020 at 4:03 pm

    I hope you can fight your cancer as well as you have fought your other condition and good luck with your hip replacement

    Unfortunately for me mine are fatal, was given 1 to 3 years, now on the third year, but I do intend to fight tooth and nail to prove them wrong, I know I wont win but I will beat the prediction..  I agree good old prednisolone (French spelling) is wonderful I am on it permanently.  Like you for me it is necessary to have an oximeter with me, especially when walking, though it is the strangest things that cause my sats to fall to really low.  I now know when walking when I need to stop, before I learnt this my vision would blur and I would get dizzy all of a sudden.  I do sometimes use O2 when I sleep, like now, I am suffering terribly from a very high tree pollen count, I live in the country surrounded by forests !!! can’t even go out walking as I just non stop cough so much so I can’t catch my breath, though can still sit, chat do anything as long as I am not moving as such, i.e on my feet, without O2, and always have been able to..

     

    Stay safe  Sue

  • Charlene Marshall

    Member
    April 25, 2020 at 1:55 pm

    @warlock

     

    Hi Bill,

    Really good idea for the experiment! I’m not sure if those of us with IPF/PF can get “too much” 02, I’ve heard no but I’ve also heard yes, and truthfully always forget to ask my physician about this. Based on the concentrators I have and LPM, I doubt I’d be able to get too much but those with higher litre flows may. Good idea to ask our physicians and circle back.

     

    I also don’t let my sats drop below 90, as advised by my physician.

    Hope you’re keeping well!
    Charlene.

  • don-graybill

    Member
    May 31, 2020 at 8:06 am

    Hi Fellow IPF Friends,

    What has been your experience in needing additional oxygen during the course of your IPF journey?  I’ve been walking several miles a day inside our house using my primary concentrator at about 4.0 liters.  My oxygen level generally hangs around 89-91%.  However when I walk outside the house with my portable concentrator at 6 liters (the max for this concentrator) I can barely maintain an oxygen level of 88 to 90%.  Have you had a similar experience?  Thanks.  Don Graybill

  • mark-koziol

    Member
    May 31, 2020 at 9:14 am

    Hello Don, it appears you are on pulse oxygen. Most pulmonologists would like their patients to stay at 94% o2 and above. It might be time to have a discussion with your pulmonologist on whether or not to make the move to continuous flow o2. This provides a constant flow of oxygen and you will be able to keep your stats at 94% or above. The doctor would have to write a prescription after an evaluation of your current needs. I am not a doctor but am writing from experience. Better oxygen saturation equals less fatigue, and I think you will feel better when exerting yourself. Take care, mark.

  • don-graybill

    Member
    May 31, 2020 at 9:22 am

    Thanks Mark.  What you suggests makes sense.  I will follow-up on that,

    Say Mark, I’ve not used this forum much and have a question on process.  You’ll notice a larger amount of extraneous text at the front of my post.  Do you have any idea what I may have done to cause this to occur?  Thanks!

  • mark-koziol

    Member
    May 31, 2020 at 9:35 am

    You are welcome Don. That text is from copy and pasting from a word document. (I think ) Our one and only Charlene will most likely fix it. I should of learned how to fix this and may be this will facilitate me to not to procrastinate. Thanks Don. Take care, Mark.

  • Charlene Marshall

    Member
    May 31, 2020 at 10:09 am

    I have fixed the formatting/code issues my friends @mark-koziol and @dongraybill 🙂

    You’re right Mark, usually this happens when a post is copied/pasted from word into the forums. The formatting gets a bit mixed up but we’re not sure why it happens. Let me know if this is fixed to your satisfaction. Have a great day!
    Charlene.

    • patricia-williams

      Member
      December 6, 2020 at 7:06 pm

      I have just had a PFT and just did a sleep study with an oxymeter connected to a device to see what my oxy drops to during the night. I cannot walk to the bathroom without my oxy dropping to low 8o. When I am sitting it is usually in the high 90. I am on 5 l  24/7. I feel like I need a higher oxy number and hoping it will make me feel better. Any one had an increase and oxy and did it make them able to do more.

  • susan-howitt

    Member
    May 31, 2020 at 12:52 pm

    Afternoon Don  (thought I had just published this but it seems to have disappeared !!

     

    Doesn’t seem to matter which I am on, pulsed or constant, I have both like you,  I still desaturate pretty quickly as soon as I move, often down to 79 within 300m.  Really does depend on the weather with me, cold brr, damp urgh, hot, phew, spring and autumn mostly good if not rainy My oxygen concentrator is also on its max.  I try and walk 4kms a day in the local forest, good and flat  with a pretty and wide track of exactly 4kms as I can’t do inclines at all, my garden though very large is all slopes.

    I have an appointment with the proffersuer du poumonology at the end of June, going to ask him what I can do as have had 2 exacerbations this spring due to massive pollen clouds and my ability to breathe has taken a real dive.

  • bill-kelly

    Member
    June 2, 2020 at 7:44 pm

    @dongraybill

    Reply to Don Graybill

    I know of no portable concentrator made anywhere that will produce more than 3L/min O2.

    You could try a little test.  If you have a home concentrator that provides 6L/min, you could attach a good long O line and use that to walk about your yard and see how your O concentration varies.

  • susan-howitt

    Member
    June 3, 2020 at 2:43 am

    Hi Bill Kelly

    My portable goes up to 5L/min as does my home concentrator both  Phillips Respironic (France) on max for both now.    Just walking around in my house on the home concentrator I dive to 79 blood oxygen at times, weirdly it is getting into bed that brings me the lowest, something to do with lifting up my knees higher maybe.

    Not supposed to attach a line longer than 10 metres to a home concentrator, suppose the flow isn’t good longer than 10m, I asked for 15m but was told shouldn’t  be done.

    Bien cordialement  Sue

  • jaime-l-manriquez

    Member
    June 3, 2020 at 9:34 am

    hello Reshma,

    I take 02 only on exertions, it work for me quite well, i walk avery day a bit, may be a block or so, slow, got tired and quit.  Respect of your question of  steroids for your mom Its no problem, my mom also with IPF she took 20mg of PREDNISONE  every day once a day she lived more than 10 years with the deseas..In my case Im taking 10mg every day, is good for inflammation of the respiratory tract, and easys of the cough. best regards,

    Jaime

  • sita

    Member
    July 10, 2020 at 12:35 pm

    I have a question on oxygen concentrator. My mom is on oxygen 24/7 and is dependent on this machine now. My questions are:

    • Does this like other appliances get overheated? Should we be turning it off for sometime?
    • Do most of you have a back up generator in the house in case of power failure?
    • My mom’s POC hardly helps. Are all POCs on pulse setting?
    • Are there any other helpful tips/tricks from other oxygen users?
    • george-poulsen

      Member
      September 4, 2023 at 3:22 pm

      Sita, I felt uncomfortable with my Inogen G5 POC and 3 batteries, (even knowing I have other alternatives with car charger etc) so first called the electric coop and asked them to note on my record that I was on 24/7 oxygen support, and they flagged my record. They seemed to feel it would offer some priority attention if electric outage…. Ok. then installed a Generac power generator to assure hose power if electric is lost. (Expensive- but let the kids recover it, uh huh). Of course we haven’t lost electric since I installed the generator either………. but I feel better for it. I sure also found out that there is a wide range of estimated costs if you do investigate generators too. We also considered where we could go to get a charge if we needed it from others who might have generators, like hospitals, Sr centers, local Motel/Hotels, maybe grocery stores 24hr. Handy to at least think about it..

  • susan-howitt

    Member
    July 10, 2020 at 5:02 pm

    Hi Sita

     

    I turn my oxygen concentrator off,  when I use my POC, yes it is pulsed and on max setting 5ltsm, even on that setting I have to stop every 200m or so, really does depend on the weather as to how far I can go before stopping, to let my blood oxygen come from about 79, (like hitting a brick wall), to 91, I use an oximeter to check this.  I have an oxygen bottle in case of power cuts, haven’t had to use it yet as the POC is always charged up full, plugged in after each use.  Is your oxygen concentrator serviced every three months?, I suspect each country might be different.  Mine are serviced by the supplier and this is paid for by the state. Even with this servicing I make sure to clean all the intake vents at least once a week to keep them free of dust especially the big one at the back, I use a wet wipe to dab any dust off the big sponge filter  and then wipe down the grill.

  • Charlene Marshall

    Member
    July 10, 2020 at 8:07 pm

    Hi Sita,

     

    Thanks for your post, good questions about oxygen – I know it can be overwhelming with all the 02 information. Do you have access to your Mom’s oxygen provider company? They would be best to answer these questions as they may pertain to her machine specifically. Does she use both a home and portable oxygen concentrator (POC)?

    I primarily use my POC and it doesn’t overheat in my experience. The only time I monitor it closely is when it’s plugged into the car charger, as sometimes that battery gets a bit hot. However, I’m never on this machine all the time as I switch between my home concentrator and tanks, so the POC gets enough breaks to avoid overheating. However, my POC runs both on pulse and continuous settings, which is enough for my need, right now.

    As for a back up generator, I don’t have one but I am on my city’s emergency preparedness program where I can call during a power outage if I need anything, including additional 02 tanks. I also try to use my concentrators around the house whenever I can, and reserve tanks in case of a power outage I can switch to those temporarily. I also sometimes go into the car for a drive when the power is out, which can re-charge my POC 🙂 Not sure if those options help? It is anxiety provoking to think of a longterm power outage while dependent on oxygen, but some proactive steps help with feeling prepared.

    The other tip I have to share is regarding cannulas… I wear mine backwards! So the cord is down my back instead of my front, it feels better on my ears during prolonged use, gets less tangled in things and fits more secure around my face as I can tighten the cord part of the cannula up against the back of my head.

    Goodluck and feel free to write anytime.
    Sincerely,
    Charlene.

     

  • susan-howitt

    Member
    July 11, 2020 at 2:58 am

    Hi Charlene

     

    What make is your POC, pulsed and continuous sound good and what lts pm can it go up to, I am on max on my pulsed and it is not enough at 5lts.

    Merci bien

  • reshma-joshi

    Member
    July 11, 2020 at 3:33 am

    Hi @Charlene!

    Hope you’re doing good. It’s been a while since I’ve written to you.

    My mom is as always taking her oxygen supplement 24/7 and yet some days are very hard for her. She can’t even move from one place to another because of a heavy breathing. And our other main concern is her weight. She has lost so much weight and she says as soon as she eats a new thing she has high cough so we have stopped giving her fruits or any new food. She barely eats any fruits and even other vegetables and foods she’s scared to eat because of this high cough and this is making her losing weight and we’re so concern about this issue. Is it normal to loose weight? And what type of food should we give her to boost her energy and immunity? Please give me few examples of food intake, it might surely help us.

    Take care Charlene and our warm wishes are always with you.

    Reshma Joshi

  • Charlene Marshall

    Member
    July 11, 2020 at 11:00 am

    Hi Susan,

     

    I use the Respironics SimplyGo machine, which has a continuous 02 flow of 2LPM and pulse up to 6LPM. Sometimes when I am going something more strenuous and require extra oxygen, I use my little D tank and strap it on my back instead. The only complaint about this POC is it’s weight, it is quite heavy for me and when I’m out, I’m lucky my friends often offer to carry it.

    Hope this helps!
    Charlene.

  • susan-howitt

    Member
    July 11, 2020 at 11:34 am

    Hi Charlene

    Thanks for the reply

    Mine is also a Respironics Simply Go but only goes up to 5 lpm and is pulsed.  I have a double battery, 4 hours is its max when on 5 lpm and yes it is heavy, mine is in back pack form and I am now used to the weight, my complaint is the heat it generates in summer from the battery, in my lower back, can’t complain in the winter lol.

    Hope the oxygen people turn up soon, running out of fresh tubes, being very sparing and using them for double the time recommended. They usually come every three months but with Covid 19 this has gone out of the window, will have to ask them what they suggest.

     

    A bientôt  Sue

  • Charlene Marshall

    Member
    July 11, 2020 at 12:12 pm

    Hi Sue,

    Thanks for sharing! I’m pretty satisfied with Respironics in general, and I hear good things about them from many others as well, but I agree re: the weight. I’m glad you have yours in backpack form, that is handy! You can also buy 02 tubing off Amazon if you needed some in the interim or as back-up until the oxygen people get there, just a little tip 🙂

  • Charlene Marshall

    Member
    July 11, 2020 at 12:18 pm

    Hi Reshma,

    Thanks so much for your note, it is nice to hear from you. It has been awhile, and I am doing fairly well thanks. I appreciate an update on your Mom, but sorry to hear the days are so difficult for her. This disease sure is cruel!

    Unfortunately, weight loss is something a lot of patients experience with this disease I’ve heard. They tell me it can be due to a number of different things: our bodies use a lot more calories while trying to breathe as a result of having fibrosed lungs, plus the lack of appetite/nausea caused by the anti-fibrotics can also keep people from eating. It sounds like your Mom is experiencing the latter. The cough can also prevent patients from wanting to eat, unfortunately.

    In terms of what you can give her to still get nutrients into her, can you make smoothies that are packed with healthy things including fruits and veggies? This would help her not have to chew/breathe and she can just consume through a straw. I find this a really good way to ensure I’m getting enough nutrients. Give that a try and hopefully it helps a bit, she can even pick what fruits/veggies to include in the smoothie with a bit of protein. You can also use the base as a high-calorie drink, such as Ensure, instead of milk… this might help with some weight gain.

    Take care,
    Charlene.

     

  • sita

    Member
    July 12, 2020 at 2:00 pm

    Charlene and Susan

    Thank you for your response. Charlene, I appreciate all the extra information you have provided. I will call the oxygen company and have them come. Due to Covid, they haven’t shown up and it has been 4 months. I think I will also call my township and put my mom in the emergency list – I didn’t know these options existed. Thank you. I appreciate it.

    We have a Resprionics too but it works only on pulse setting, mom’s level only goes up to 90 on it. She dislikes the pulse flow, says it is very uncomfortable. The pulmonologist has contacted the oxygen company for us to change our POC to continuous flow. May be that would give a break to the main concentrator, my mom recently finds it very hard to be without the oxygen even for few minutes.

    Thank you ladies, I am so grateful to all your feedback.

  • sita

    Member
    July 12, 2020 at 2:04 pm

    @reshma

    When my mother was diagnosed in 2015, she was 125 lbs, now she is 95 lbs. She eats very little. She says she can’t taste or smell anything, sweet is the only taste she has retained. Thanks to heavy dose of steroids and cellcept, it leaves them with all these side effects.

    I agree with Charlene, I give her ensure also, it gives them a good source of nutrients. I also give her soups, she finds this texture easier to eat. Remember, being too full makes their breathing very uncomfortable, so if you can give her small portions in frequent duration that would help her.

     

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