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    • #22898
      Reshma Joshi
      Participant

      Hello!

      Can anyone please let me know what’s the safest level of oxygen for the patient with ILD? My mom is 57 and currently her oxygen level is 87-89. Her oxygen level decreases while coughing.

      Reshma

    • #22905

      Hi @reshma ,

      Thanks so much for writing and really good question! However, I think referring you back to your Mom’s specialist is likely the best route to go here as oxygen needs are so unique to each patient. There are also a number of tests that are conducted ahead of a physician prescribing supplemental oxygen, and not having the correct amount of 02 is arguably as dangerous as her not using it at all. Do you have any appointments coming up with her doctor or could you call them and ask for her to be assessed for supplemental oxygen? With those numbers, I would guess that she would qualify even for using it on exertion or at rest.

      I’m sorry this isn’t super helpful, I just wouldn’t ever want to steer you wrong in terms of oxygen advice as the needs are so unique to each person.

      Sincerely,
      Charlene.

    • #22992
      Bob
      Participant

      Does anyone know if high heat and humidy can contribute to lower oxygen levels.
      I am in Hawaii and have noticed my level drops seriously when walking without my portable oxygen concentrater. I use an oximeter for my readings.

      I hope i am not stealing this thread but i could not see how to start a new one.

      Bob

    • #22994

      @bmiller2653

      Hi Bob,

      Thanks so much for writing regarding oxygen needs during high heat/humidity. You aren’t ‘stealing’ the thread at all, I’m glad you wrote as this is a really good topic. I think it is just a prime example of how different this disease is for each of us, as I was in Hawaii in October (temperature was around 38-40 Celsius so quite hot) and I found my breathing was better there, oceanside, then at home. Is the air quality clear, as far as you can tell? Sorry I can’t be of more assistance in terms of the Hawaii particulars, however, overall, I find humidity a lot harder for me to breathe in. Humidity causes me to be more short of breath and gasping to breathe well, whereas extreme cold causes more pain in my chest/lungs which makes breathing difficult as well. Anyone else experiencing what Bob is/has?

    • #23117
      Reshma Joshi
      Participant

      Thank you @charlene for the information. My mom is now taking oxygen at home but as soon as we take out the oxygen her saturation drops. So is it okay to give her oxygen all the time? Also even if she walks and do some light activities inside the house she gets very exhausted and her shortness of breath increases. But the doctor has advised to make her physically active. What should we do in this condition? Should we make her walk or do some light activities even though she has shortness of breath?

    • #23137
      Richard L Shelby
      Participant

      Think of O2 levels this way: A healthy person has an O2 saturation of 97-99. Less than 95 is considered low. If the O2 saturation is too low then the person will be prescribed supplemental oxygen. The goal of treatment with supplemental O2 is to keep the patient’s O2 level in the normal range, i.e. 95 or above. People using supplemental O2 should use a pulse oximeter and adjust the supplemental O2 to stay in the normal range.

      Your body requires different amounts of oxygen depending upon your activity so patients will need a higher supplemental O2 flow rate when walking or climbing stairs than when sitting. Coughing will usually cause the O2 saturation to decrease because coughing prevents normal breathing. Usually the O2 level will improve soon after the coughing stops.

      Low O2 saturation causes damage to the body. The brain is especially susceptible to damage from lack of oxygen. There is no “magic number” below which damage occurs — too low is bad even if it doesn’t result in immediate, noticeable damage. It isn’t the case that O2 below 95, or 90, or 88 will definitely cause damage, however, damage is more likely to result as the level decreases or when a low level persists over time. But given that normal is considered to be above 95, why not adjust supplemental O2 to keep the patient’s O2 at 95? Until the patient’s lungs got bad, the patient lived at that level, and healthy people still do.

      Here’s an article on O2 saturation; it’s aimed at COPD patients but the information applies to IPF and PF patients also: https://www.verywellhealth.com/oxygen-saturation-914796

      Richard

       

    • #23144

      @rlshelby

      Hi Richard,

      Thank you so much for sharing this comprehensive overview of 02 needs, I appreciate the time and energy it likely took you to write all of that out. I have no doubts it will help others on the forums too! Oxygen needs are a tough topic to talk about with others, because you’re right: there is no “magic number” to go by which corresponds with your saturations or activity level. I’m also finding it hard to tell when I need more oxygen (or don’t) just based on how I feel. Thanks again for highlighting this for all of us.

      Take care,
      Charlene.

    • #23148
      Reshma Joshi
      Participant

      @rlshelby

      Thank you so much for your valuable information. We’ll definitely adjust our situation based on your information 🙏

      • This reply was modified 4 months, 2 weeks ago by Charlene Marshall. Reason: tagging
    • #23167

      @reshma,

      Hi Reshma,

      Thank you so much for writing and letting us know how your Mom is doing. Regarding oxygen, I’m sorry to hear her saturations drop so quickly after taking out the cannulas. This most likely would mean she requires more oxygen, but 02 is so unique to the disease and each patient, that I can’t advise how to proceed. Richard did provide a good overview, and I’d agree with that but connect with your Mom’s doctor about maybe increasing her oxygen use to daytime as well. I started with just nighttime use and have since progressed to keeping it on 24/7 ideally.

      Feel free to connect anytime.

      Charlene.

    • #23210
      Reshma Joshi
      Participant

       

      Hi Charlene,

      We’re now giving her oxygen almost all the time. We bought an electric Oxy-Med which is working fine and the doctor has increased the no.of medicine that she needs to take everyday. Now she’s precribed to take 3 Prifinex 3 times a day. Hope her condition improves in coming days. Thank you so much for your information. We appreciate it alot 🙏

    • #23289

      Hi Reshma,

      Thanks so much for circling back to let us know how she’s making out, I appreciate it. I hope the 24/7 oxygen will help, at least with some of the cruel symptoms of IPF. Keep me posted on her progress if you don’t mind, I hope she can tolerate the new prescriptions well. Thinking of you – write anytime!
      Charlene.

    • #23689
      Reshma Joshi
      Participant

      Hi @Charlene!

      My mom is taking oxygen supplement 24/7 these days and we’re making her walk for few minutes every day but some days it’s very difficult to walk even with oxygen, she started to cough a lot so we’re very confused whether we should make her walk in such condition? At the same time we’re afraid she might not be able to do her daily activities if we just put her in rest. So we’re very confused what to do. Please suggest me if you know something about it.

      Warm regards,

      Reshma

    • #23727

      Hi Reshma,

      Thanks so much for getting in touch and letting us know how your Mom is doing. The struggle really sound so tough, I’m sorry to hear of this. As for the walking, this probably is a good idea (just based on my experience, which is not an MD and in no way a medical expertise) but I can’t direct you on how to proceed here. You should talk to her physician about the cough that starts upon exertion, it may mean her oxygen needs increase when she is walking vs. when she is sitting. Movement is important for PF patients, but only when it is safe for them….this is where the expertise needs to weigh in (ie. her physician) on her particular situation.
      Take care,
      Charlene.

    • #23730
      Reshma Joshi
      Participant

      Hello @Charlene!

      I know it’s very tough situation for my Mom and a tough decision for us to make about her exercise and all. Now we have decided to do like this, we see her condition during the day and if she’s fine we’ll make her to some activities and if she’s exhausted we’ll make her rest. Let’s see the progress in coming days and I’ll keep you updated on how she’s doing. Thank you so very much for always taking time and responding us. It means a lot for me and my family.

      Lots of love,Reshma

    • #23738

      Hi Reshma,

      It’s truly my pleasure – I just wish I could do more, and say / give advice with confidence. I only have my personal patient experience to rely on. Finding a balance between rest and exercise for your Mom is an excellent idea; something I am still trying to find myself and do well. Please do keep me updated on how she is doing, I think of you and her often. Take good care and feel free to connect anytime! Sending love back to you.
      Kind regards,
      Charlene.

    • #23743
      Reshma Joshi
      Participant

      Hi @charlene!

      It’s always a good feeling talking to you and sharing my mom’s condition. We’ll continue to make her do some exercise along with some rest. I’ll keep you updated about her condition. Thank you for being there for us through this Forum 🙏

      Take care and be safe from Corona ❤️

      Lots of love, Reshma

    • #23985
      Reshma Joshi
      Participant

      Hello @Charlene!

      Hope you’re doing well. I have few questions about steroids. How long can a patient take a steroid? Is it safe to take steroids for 15 days? And in which cases steroids are given to the patient? My mom is feeling better with the chronic cough from few days but the doctor (we visited another doctor as an alternative) precribed Cortilone for 15 days. My mom hasn’t taken steroids for this long before (only upto 7 days she’s taken) so we thought not to give her steroids for few days, if her condition gets bad then we’ll give it. Is this a good decision that we made?

      Best wishes and lots of love,

      Reshma

    • #24023

      Hi Reshma,

      Thanks so much for writing and giving us a bit of an update on how things are going there. Really glad to hear your Mom is starting to feel a bit better from the chronic cough. Unfortunately, I can’t answer the steroid question as I am not a physician and can’t offer advice on that (it is out of my scope of knowledge). I have been prescribed more than a 7-day course of steroids in the past, I believe it was 10 days but that wouldn’t be a blanket rule for everyone. I’d call your Mom’s doctor who prescribed the steroid to ask about length, and clarify your plan with them 🙂

      Sorry I can’t be of more help.
      Cheers,
      Charlene.

    • #24034
      Reshma Joshi
      Participant

      Hi @Charlene!

      Good to hear from you always. No worries thank you. Mark has replied me about this topic. You take care and stay safe 🙂

      Warm regards, Reshma

    • #24082
      Bob Rawlins
      Participant

      I agree, there is no magic number.

      my doctors want me above 88 all the time no matter what I doing!

      Understand I am an ARDS survivor and was left with scarring and ILD.

      Even with high oxygen therapy I rarely hit 94. 91 or 92 is my rest normal.

      I think your Doctor is the best and only source I would confide and listen to.

      Good Luck, it stinks being on Oxygen 24/7 but could be worse, right?

      All the best to you on your journey.

      Bob

    • #24097
      Reshma Joshi
      Participant

      @oxygenman

      Hello Bob!

      Thank you so much for your response. We really appreciate any kind of advice or suggestion. They’re very helpful.  Since you have said about your oxygen situation, what do you do for the daily activities in such case? Do you just rest or you keep doing your things? My mom’s doctor said it’s very important to be physically active but it’s very hard to do anything in such cases. Please write to me about your normal daily life so that we could know how other IPF patients are dealing with it.

      Best wishes,

      Reshma

      • This reply was modified 2 months, 2 weeks ago by Charlene Marshall. Reason: tagging
    • #24103

      Hi Bob,

      Thanks so much for sharing this information, and I certainly agree with you: our physician(s) are the best source of information on 02. I am also advised to always be 88+ when it comes to my saturations. Continue to be well, and thanks for writing.
      Charlene.

    • #24107
      Susan Howitt
      Participant

      I am on permanent steroids and have been for 2 years, not a high dose 10mgs but if I have an infection it has been increased to 40mgs for two weeks.

      I know steroids and the Corona virus don’t mix, think being right out in the country I am fairly safe but am under no illusions if I get the virus I am a goner.

      I have been able to get my walking up to 4 kms over the last few months even though I rarely can get much above 80 if I am moving, machine on max output, and have to stop frequently (every 1/2 km) to get my sats back up, take a minute or two.  High tree pollen count has severely knocked me back over the last few days and am struggling to even make 1 kms and keep above 79.

    • #24113
      Bill Kelly
      Participant

      I never let my O saturation drop below 90 if I can help it.  The tip off is that your heart rate will rise as your body tries to get more O into your system.  This can’t be good long term and in retrospect I now realize that I had a lung problem months before it was diagnosed.

      I would love everyone here to do a little experiment.  Ask your doctor if, with the O supply equipment you have, you can overdose on O.

      My pulmonologist told me I can’t possibly get too much because I would need a higher partial pressure than my equipment can provide.  Here I read people saying that they can get too much which really surprised me.  I need far less than some of the people here, 3-4L when walking, cycling or playing table-tennis.

      My lung problem is diffusion not capacity ie I can take in plenty of air but my lungs will not extract enough O to run my body.  After nearly 5 years on O I have to say that if your saturation goes down to 80% IMHO you need more O.

    • #24116
      Susan Howitt
      Participant

      I am on the maximum my machine will supply.  It is only when I move I need oxygen, sitting her at the computer my sats are 93. To sleep I don’t need O2 either but just to get undressed and into bed I can go down to 75, no one can explain this. This has all happened in two years.

      I am greedy in the fact that I have 4 advancing lung conditions at once plus GERD

    • #24117
      Reshma Joshi
      Participant

      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

    • #24121
      Bill Kelly
      Participant

      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

    • #24122
      Susan Howitt
      Participant

      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

    • #24142

      @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.

    • #24533
      Don Graybill
      Participant

      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

      • This reply was modified 1 month, 1 week ago by Charlene Marshall. Reason: formatting to remove code
    • #24534
      Mark Koziol
      Keymaster

      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.

    • #24535
      Don Graybill
      Participant

      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!

    • #24536
      Mark Koziol
      Keymaster

      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.

    • #24540

      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.

    • #24541
      Susan Howitt
      Participant

      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.

    • #24562
      Bill Kelly
      Participant

      @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.

    • #24573
      Susan Howitt
      Participant

      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

    • #24570
      jaime L manriquez
      Participant

      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

    • #24921
      Sita
      Participant

      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?
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