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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?

      • #27335
        Paul Caden
        Participant

        I agree with Charlene that cold air hurts the lungs when I hike, cross ctry ski , skate etc in cold weather.

    • #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 🙏

    • #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

    • #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 year ago by Charlene Marshall. Reason: formatting to remove code
    • #24534
      Mark Koziol
      Participant

      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
      Participant

      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.

      • #26390
        Patricia Williams
        Participant

        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.

    • #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?
    • #24924
      Susan Howitt
      Participant

      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.

    • #24925

      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.

       

    • #24928
      Susan Howitt
      Participant

      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

    • #24929
      Reshma Joshi
      Participant

      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

    • #24931

      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.

    • #24932
      Susan Howitt
      Participant

      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

    • #24933

      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 🙂

    • #24934

      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.

       

    • #24937
      Sita
      Participant

      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.

    • #24938
      Sita
      Participant

      @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.

       

      • This reply was modified 11 months, 1 week ago by Charlene Marshall. Reason: tagging
    • #24942

      Hi Sita,

      No problem at all, I’m glad you found my reply helpful along with Susan’s. We’re better when we can support each other, and I’m so grateful for the forums platform and being able to do that. Definitely call the township and ask about any emergency preparedness support or programs they offer your area, as it may look different from what we have but I would imagine they have something available. If not, ask them what they recommend for people who rely on a power supply to get oxygen, they will likely have some sort of solution just not sure what it looks like where you are.

      I’m glad the 02 provider is requesting continuous flow oxygen as well, that’s great. It will be more comfortable for your Mom, as her saturations should be over 90 with supplemental oxygen (I would think, keeping in mind I’m not a physician). Take care, and glad you’re finding the forums helpful.

      Sincerely,
      Charlene.

    • #24945
      Reshma Joshi
      Participant

      @anjanaiyer

       

      Hi Sita

      Thank you so much for your reply. Every responses people give are so important to us. We understand now that the weight loss is normal but as children we sometimes get very stressed out and keep reaching out to the people with similar disease. It’s always very helpful. My mom says she has some irritation when she drinks milk so now we have stopped giving her milk products and searching for other alternatives.
      Also I would like to ask you is your mom taking steroids everyday? I can see that the doctors in different countries have their own ways of treatments and in our case my mom’s doctor doesn’t prescribe steroids unless it’s very severe. But when she takes those steroids she feels good and a little bit active so we asked her doctor of giving small doses of steroids everyday but they didn’t agree for it. That’s why we’re always confused about these steroids. Is it good or bad to take it everyday?

      • This reply was modified 11 months, 1 week ago by Charlene Marshall. Reason: tagging
    • #24947
      Sita
      Participant

      @reshma
      Dear Reshma

      I find a lot of similarity between our moms. She says the same thing about milk too.

      Steroids doesn’t cure any condition, it only gives them some relief. My mom and I resisted taking steroids until she could hold out. Then we agreed to 5 mg per day, it was then increased to 10 mg if we needed to travel or do something outside home. Her condition worsened in her last travel to India, I don’t know if it is the air quality or the pollution, I accompanied her back to here. Ever since that she has been on 20 mg, May she worsened a bit so we increased to 40 mg for 2 weeks and then brought it down to 30 and now to 20 mg again. You can talk to your mom’s physician, but again this is not a cure…you are only treating her symptoms.

      We have also tried homeopathy. It worked for sometime but not much options now 🙁

      • This reply was modified 11 months, 1 week ago by Mark Koziol.
    • #24960
      Sarv Punj
      Participant

      I have gone through some of the correspondence on the need for Oxygen. I would like to share my experience as I am closely monitoring the condition of my wife. It’s true,Oxygen requirement for individuals suffering from IPF or other COPD disease is unique to individuals. My wife started using oxygen about 1 1/2 yrs back @ 2-3 lpm constant flow however with the progression of disease it increased to 4-5 lpm till as late as January 2020. Lately she suffered 2 episodes of exacerbations , one in February and another in first week of July which has resulted in tremendous increase in Oxygen need. She is now needing Oxygen @ almost 20 lpm. I am using 3 oxygen concentrators in series to get that amount of Oxygen supply. We have also obtained 2 Jumbo Cylinders as standby for in case of an emergency.Mind you , I am talking of round the clock supply of Oxygen , not intermittent. She was in hospital for 8 days but due to fear of COVID, we got her home last Wednesday and arranged everything at home.

      • #24997
        Susan Howitt
        Participant

        Hi Sarv

         

        Sorry to read your wife is having to have such a dramatic increase in O2.  I have also had 2 exacerbations this year but no where near a severe as your wifes.  Covid is such a big worry for all of us.

        Cordialement  Sue

    • #24968
      Reshma Joshi
      Participant

      @anjanaiyer

      Hello dear Sita

      I always feel so sad to hear about the pain that our loved ones are going through. I feel so helpless at most of the time.

      I live in Sweden with my husband and my parents and younger sister lives in Nepal. Since you said you’re from India I can now relate many things between us. Doctors in Nepal are very unsupportive, they just prescribe medicine and nothing else. The best thing I have done in my life is to join this forum. It has been so helpful to us and we have adopted many advices from this forum which has helped my mom alot.  Yesterday when you shared about giving Ensure to your mom has brought me to attention about such things so I immediately talked to my sister and she arranged it back in Nepal. So thank you so much for that 🙏

      Because of this Covid, things are so bad in Nepal that medicines are out of stock since they’re supplied from India. We don’t know how we gonna manage that 😞

      It was very good talking to you Sita. Take care and warm wishes to your mom 🙏

      Reshma

    • #24972
      Bill Kelly
      Participant

      Charlene,

      I’m addressing this to you because you are the moderator, but it applies to several recent posters and everyone who is on O2.  I have thought long and hard about this and I feel an obligation to say it but I don’t want and will not get into any argument about what I am going to say.  You can believe it or not – your choice. It’s your life! (Not you personally, Charlene, everyone with serious lung disease who needs oxygen.)

      POCs  that have controls for pulse 1-6 do not mean 1 to 6 litres/min.  I don’t care what the salesman told you.  Makers are free to put as many settings as they like and each maker may mean something different.

      Read the manual for your machine issued by the maker.  Most show the bolus or puff of air for each setting. For example, Oxlife Independence: Pulse setting 1 = bolus or pulse of 16 mL, Pulse setting 6 = 96 mL and usually you can take 20 breaths/min.  Simple arithmetic will show you that this is not 6L/min.

      I have never seen a genuine maker’s User Manual that claimed a pulse rate of even 3L/min.  I have seen altered excerpts on E-Bay that claimed it.  Makers, and I have read everything I could find on the net, never quote pulse rates in terms of L/min (They quote bolus size or are completely silent on what pulse rates mean).

      This only applies to machines – oxygen cylinders, gas or liquid may have controllers that say “C” or “D”.  C means continuous and D means demand.  If you set it, for example, to D 2.5 the regulator will deliver a puff equivalent to 2.5L/min when it senses your inhalation.

      If your O2 level is dropping to 79% you are not getting enough oxygen whatever the reason and you can fatally damage your health over a period of time.

      Stay safe everyone.

      Bill

       

    • #24974
      Susan Howitt
      Participant

      Hi Bill

       

      Your post made me go and look at my **Fiche de liaison oxygénotherapie** which the technicians have to fill in each time they visit (last visit due missed because of Covid) and in it is the debit L/mn at rest and effort  1l and 5  two different machines, the first one has been put up to 3 on their last visit, the POC is on max at 5.  Now I must admit that although for the static machine notes  it does say debit 3L/m, they only say debit recorded for the POC, 5,  no L/m after the 5 and yes I really struggle and often go down to 79 and even below this at times when walking and have to stop to get back up to 91, takes about a minute..  After reading your post I will have to speak to some one.  Thank you

    • #24975
      Susan Howitt
      Participant

      I did edit my post after looking up my machine on the net, the edit didn’t register,  but yes it does say it goes to 5lms which for me is not enough

    • #24992
      Reshma Joshi
      Participant

      Dear @charlene

      I shared everything you said with my sister back in Nepal and she has bought similar to Ensure. Thank you so much for the info.

      Yesterday night my mom woke up to go toilet and there was power cut for a while so she couldn’t use oxygen but it was so hard for her that she fell in the ground and my dad and my sister heard her falling then they give her oxygen immediately. They went to the hospital this morning and asked to do x-rays and CT scan. X-rays showed a bit increase of the scars. Her doctor said to get admit in the hospital for monitoring but my mom didn’t want to stay so they came back home with. She’s been prescribed steroids 40 mg for a week. Should she have stayed in the hospital? I was telling her to stay in hospital but she says they give same oxygen and steroids in the hospital as well which I’m having in home. So we’re very confused about this situation whether to let her stay at home or in the hospital.

      Warm wishes

      Reshma

    • #24993
      Susan Howitt
      Participant

      Me personally would never stay in hospital if I could help it,  your mother feels more comfortable at home that is obvious.

      If there is a short power cut, get your mother to lie on her left side, always have to head of the bed raised, on bricks or by a wedge pillow, and as long as she doesn’t panic or move about too much she should be OK for a good few minutes until the power comes back on.

      Taper down the steroid after the week can have some nasty side effects if just stopped suddenly. Took me nearly a month to come down off 60mgs back to my usual 10mgs.

    • #24995
      Reshma Joshi
      Participant

      Hi @reglois (Susan)

      Thank you so very much for such a prompt response. I’ll share these suggestions with my family ASAP. Thank you 🙏

    • #24996
      Susan Howitt
      Participant

      You are welcome Reshma

      Must be hard for you to be so far away, I like you reply on help and suggestions on this forum as I am in a foreign country and live alone.  My combination of lung diseases is not well known here so I rely on the States and Canada for research and information and also I find things out for myself and lying on my left side eases my breathing enormously and  a wedge pillow or something under the top end of the mattress or even bricks under the top feet of the bed is a great help, I put a pillow under my hips/backside to stop myself from sliding down the bed during sleep.

       

      Bien cordialement  Sue

    • #24998
      Reshma Joshi
      Participant

      Hi @reglois

      I can understand you so well since I’m doing the same. Healthcare in Nepal is not good as US, Canada or Sweden and also this disease is not common there. Doctors never provide any information at all besides just prescribing medicine. We were so frustrated and felt helpless. Since I joined this Forum it has been very very helpful. I’m very grateful to everyone in this Forum 🙏❤️

      Thank you Susan for your suggestions about sleeping positions and all 🙏

      Take care

      Reshma

    • #25000

      Hi @reshma & Susan ( @reglois )

      Thanks so much for sharing this experience, though so sorry to hear of your Mom’s struggle when there was a brief power cut from her oxygen. That is so scary when it happens! Does she use both tanks and a concentrator Reshma? I always keep one tank filled at home, which doesn’t require a power source, for instances when I lose power. I know it isn’t as easy as that, but an option to have nonetheless. Glad the hospital saw her, and I hope she is doing a little better now?

      Unfortunately, I can’t advise on whether or not she should have stayed at the hospital as I do not have a medical license. The only thing we can share is our experience, and maybe what we (as patients) would have done, similar to Susan’s comment. However, one person’s experience is not always reflective of others’, so Susan may not have stayed but I might have as an example. It depends on many factors like the support she has at home to ensure she is safe etc. I would hope that if there was imminent risk to her, that the hospital would not have let her leave. I’m sure she is more comfortable at home, like we all would be, however, each person’s experience is different. How is she doing on the steroids and 02 now?

      Charlene.

    • #25002

      @reglois

      Good advice Susan, thank you for sharing.


      @reshma
      : please ensure you follow the doctor’s advice on her steroids, and tapering down on them. It is important that information on this forum is not substituted/replaced for any medical advice, even though patient’s have a lot of insight to share. I hope your Mom is doing a bit better now.

      Sincerely,
      Charlene.

    • #25005

      @warlock ,

      Hi Bill!

      Thanks so much for writing, and reminding everyone of that information. You are correct: the setting on the POC is not reflective of the oxygen LPM being delivered (for concentrators), and the maker of the machine should always be consulted, in addition to your physician, when determining how much 02 you need. I hope most individuals know/understand this, but just reference the settings as part of conversation (I know I am guilty of doing this sometimes). This is always good information to remember when discussing POCs vs. tanks, thanks for the reminder 🙂

      Hope you’re doing well.
      Charlene.

    • #25007
      Reshma Joshi
      Participant

      Hi Charlene
      We do have a separate oxygen cylinder for such power cuts cases but last night my mom thought she would be okay just to go to the toilet so she didn’t put oxygen cylinder. Thank God she was okay as soon as she was given O2 .
      Yes, we follow the rules of taping down the steroids and will keep on doing so. She’s a bit fine today after taking steroids. Hopefully this will ease her for some time.
      Thank you for your concern 🙏
      Warm regards

      Reshma

    • #25008

      Thanks for letting me know Reshma – glad to hear today is a bit better, and I hope she continues to improve. I’ll be thinking of you both!
      Char.

    • #25014
      Reshma Joshi
      Participant

      Hi dear Charlene, Susan, Sita:

      My mom’s CT scan and blood report came today and it’s not good. Doctor said my mom’s fibrosis is increasing rapidly, the report said so. He told my sister she has 1-2 yrs now and asked not to tell my mother about this. The doctor said we need to make her exercise and walk more.

      She’s taking Emsolene 40 mg steroids for a week now but he said to completely stop after 7 days, no taping down. Is it safe to stop like this? Doctor said since it’s only for 7 days it’s ok not to tap down. So we’re bit surprised about that.

      It’s a very hard day for us today, me and my sister to get this news. I can barely even hold myself. My mother is just 57 and this fast these things happened. Please help us with any advices, information or suggestions about how  she can fight this disease 🙏

    • #25015
      Susan Howitt
      Participant

      @reshma

      If it is any help, I was given 1 to 3 years, STILL here after three years even though my diseases are advancing fairly rapidly too, I have always tried to keep as active as I can, before the diseases hit I would walk 10kms with my 8 dogs, now only have 2,  this March I could walk 4 kms, on the flat and now only 2kms and no inclines at all but I push myself hard even if it is a struggle to breathe, I take my dogs into the forest (drive there) and take notice of all around me helps to keep going, I have my oximeter with me, I have to stop every 200m to let my blood oxygen get back up, dogs look at me and now know the click of the oximeter when I turn it off and on we go, have a little step counter too..  Don’t give up hope please, your mother has to believe that she can do this too.  Determination and sheer pig headedness is me, the disease got my husband, will not get me so fast.

      Surprised the doctor didn’t make sure your mother was exercising before this.  I also have a machine that has tension straps on it, this is useful for exercising the lungs as well on days when I can’t go out.  At the moment here is it pretty hot 30° even in the evening and I struggle, damp and windy not good either.

      Don’t let yourselves believe this is the end, it is not, you getting down will not help your mother, brave face and we will fight this together attitude.  Good luck.

       

      I am not a doctor but personally from experiences I would taper off, I am surprised at how many doctors don’t tell patients to taper.

    • #25017

      Hi @reshma ,

      I am so sorry to hear about this news! I can only imagine the difficulty you and your sister are going through right now. This disease is so cruel and so unpredictable.

      Did she have a high-resolution CT scan (HRCT)? This shows fibrotic development best. I’m not sure what blood reports would reveal this, but of course the medical team knows more than I do. Like Susan said, Doctor’s predicting prognosis isn’t always right. Many of us were told we had 3-5 years and have exceeded that by far. However, I am most concerned that the doctor said not to tell your Mom this news. That should be your choice, and your Mom’s… not the doctor’s. If she wants to know, she has a right to know what the doctor’s are relaying about her care. As hard as it is, exercising is very good for her, all of us, with a pulmonary condition. Have you checked out Noah Greenspan’s online bootcamp through the Pulmonary Wellness Centre? You can read about it HERE.

      This may be a good option for her to try at home.

      I can’t give advice, neither can anyone without a medical license, on the tapering of the steroids. Is there another physician you can obtain their thoughts on regarding this, if you aren’t confident in the current doctor’s plan?

      Thinking of you! Please keep in touch.

      Charlene.

    • #25020

      Hi Sarv,

      Thank you so much for writing and sharing your thoughts on 02 with us. I’m so sorry you’re having to learn all of this to support your wife, but she is so lucky to have you! Enduring an exacerbation is very scary, so I can imagine both of hers in February and July were tough on both of you. Kudos to you for being such an advocate and strong caregiver for her!

       

      I hope she is managing okay at home. I don’t blame you for not wanting to keep her admitted to the hospital amid the pandemic.

      Take care,
      Charlene.

    • #25022
      Susan Howitt
      Participant

      Hi Charlene

       

      Yes I agree with you that the doctor should not have said not to tell their mother BUT, my husband gave up when told so I suppose it really does depend on the personality of the patient but of course it is up to the family to decide that, not the doctor.

       

    • #25023

      Hi Susan,

      Yes, I agree: it does depend on the person and situation I suppose. What didn’t sit well with me is that the doctor advised their Mother not be told, rather than give that as an option to Reshma and siblings. Presenting all the options in terms of relaying information is important, I wish the doctor would have done this. Thanks for writing 🙂
      Char.

    • #25024
      Reshma Joshi
      Participant

      Hi @reglois and @charlene

      Thank you both so much for showing support and care 🙏

      Regarding daily exercise and walks, my mom barely can walk inside the apartment but we make her at least walk from one room to another. It’s very hard for her to climb stairs so we had stopped making her do that. So my concern here is if we should make her walk or climb the stairs even if it’s hard for her? The question always is how much should we push her to walk or exercise?

      About the Bootcamp that you suggested Charlene, it looks very productive. I’ll definitely check into it. Thanks a lot 🙏

      Warm regards

      Reshma

    • #25025
      Susan Howitt
      Participant

      Hi Reshma

      If your mother hasn’t been exercising of course she is going to find it difficult, baby steps a couple of minutes at a time several times a day to start.

      I can’t do stairs or slopes and I am used to exercise.  Walking yes, little bit further each day, an oximeter, used at intervals, will help give her the confidence that her oxygen is not too low or that she needs to take a short break to get it back up and/or turn the O2 up a bit while exercising. You soon learn what real O2 shortage feels like.  I sometimes feel very short of breath but when I check it is not true, I think it is when I have too much carbon dioxide in my system, I then practise pursed lip breathing, should do it more often really.  Has she a garden she can walk in, looking at the flowers, checking on weed growth, look at the birds etc, anything to make the walking more interesting rather than a chore.  She will find it hard, very hard at first.  Even weight lifting a can of beans in each hand is good lung exercise, out to the side, the front and up.  Supermarkets used to be a good form of exercise as they are very level but with Covid about that is out for most people, I am lucky in the fact that I live out in the sticks and around 1pm on a Monday or Tuesday I am often the only one in there, can walk a good km and a half or more round there just doing the shopping. I truly do believe that keeping moving has kept me going, but fighting the utter fatigue is hard, that is why I say try and make it as interesting as possible

      I know I  probably have  different problems to your mother but mine does include fairly advanced pulmonary fibrosis

       

      Wishing you all the very best

    • #25026
      Reshma Joshi
      Participant

      Hi Susan

      You’ve been so inspiring for us. We’re very grateful to you. I have read your suggestions very carefully and have forwarded to my sister also. We’ll be doing everything for our mother. We’ll track her exercise and walks everyday from today.

      Will keep posting about her. Thank you for all the help 🙏

      With love,

      Reshma

    • #25027
      Susan Howitt
      Participant

      Hi Reshma

      Only too happy if I can be of help

      Have you got or can you get a finger oximeter, they are not very expensive and for me indispensable,  if you do buy one make sure it is not coming from China, eg a company like Wish, very cheap + or – €10 and usually free delivery (will take a couple of months to arrive, if at all)  prices vary for a goodish one between €20 to €30 UK and Europe.

      Your mother is lucky to have such caring children.

    • #25029
      Reshma Joshi
      Participant

      Hi Susan,

      Yes, we have oximeter and we use it many times a day. Thank you for your concern again.

      Susan one thing I wanted your advice on is we’re planning to buy a treadmill for my mom. In Nepal it’s not a wise decision to go out for a walk since it’s very polluted and we’re scared if it will harm her more. Also there’s a risk of corona these days. So is buying a treadmill a good idea?

      With Love

      Reshma

    • #25031

      @reshma,

       

      Thank you for all your correspondence and wonderful conversation. I’m really hoping you find the forums helpful! 🙂

      I do have to advise though: specific questions on your Mom’s care need to be directed from a physician. While many of us are patients and have a lot of advice to offer, no one on this site is qualified to answer questions on exercise, oxygen, titrating medications, etc. May I have your email and I can possibly connect you directly with Noah Greenspan (with his permission) to obtain professional advice on the question of exercise? We have grown to care about your Mom through the stories you’ve shared, and I would feel terrible if I (or someone else) provided information that was risky for your Mom’s condition.

      Please let me know your thoughts.
      Sincerely,
      Charlene.

    • #25032
      Susan Howitt
      Participant

      Hi Reshma

      A treadmill really is not something I can give you any advice on at all, only a physician that knows your mother and has access to all her notes can do that.

      There are lots of exercises she can do that do not require machines, just music to make them more interesting.

    • #25033
      Reshma Joshi
      Participant

      Dear @charlene!

      I’ve done the best thing in my life by joining this forum. I’ll be eternally grateful to all of you 🙏🙏

      My email address is [email protected]

      Thank you for being so kind. I’m very overwhelmed from all you guy’s support 🙏🙏🙏

    • #25035

      Stay tuned @reshma – I will facilitate that introduction to Noah Greenspan this afternoon. He gave me permission to connect the two of you! 🙂

      I’m so happy to hear the forums have been helpful to you. We’re here for you, your sister and your Mom!
      Hugs,
      Charlene.

    • #25037
      Reshma Joshi
      Participant

      Thank you thank you so much @charlene.. You’re like an angel for us ❤️

      Lots of love ❤️❤️🙏

      Reshma

    • #25042
      Reshma Joshi
      Participant

      Hi everyone!

      One quick question.. Can a patient with IPF have a coffee??

      Regards,

      Reshma

    • #25043
      Susan Howitt
      Participant

      Sorry can’t answer that.

      Personally I can’t, seem to be allergic, but then I haven’t got IPF but CPFE

      Sue

    • #25044
      Mark Koziol
      Participant

      @reshma

      Hello Reshma, coffee is not forbidden but like with anything too much of a good thing is not a good thing. For persons who have acid reflux coffee is not the best drink for an ipf patient. Coffee is also a diareutic so you need to compensate by drinking more water to stay properly hydrated. I would still talk to  your moms physician for further info. Even after transplant coffee still gives me a little heartburn. Take care, Mark.

      • This reply was modified 10 months, 4 weeks ago by Charlene Marshall. Reason: tagging
    • #25036
      Reshma Joshi
      Participant

      Thank you thank you so much @charlene. You’re like an angel for us ❤️❤️

      Lots of love,

      Reshma

    • #25049
      Reshma Joshi
      Participant

      Hi @reglois @mark-koziol

      Thank you for your reply. I’ll check into with her physician as well.

      Best regards,

      Reshma

      • This reply was modified 10 months, 4 weeks ago by Charlene Marshall. Reason: tagging
    • #25050
      Susan Howitt
      Participant

      Grr  Do wish security guards knew the new rules, I was stopped today entering a supermarket because I wasn’t wearing an actual face mask but a medical face shield, was told I had to wear a regulation mask, told him to go and read the exemptions. I wear a portable oxygen back pack and very obvious nasal prongs !! He came back and apologized but his supervisor grumpily said that it wouldn’t hurt me to wear a mask for 30 minutes. !!!  she ought to try having severely compromised breathing, a mask actually will not fit properly because of the nasal prongs so not good protection anyway.

      There is a debate as to whether masks or face shields are the best.

    • #25053

      Hi Susan,

      I am so sorry to hear that this was your experience at the supermarket! You are correct, there seems to be a lack of understanding as to whether masks or face shields are best but here in Canada, either one will work. Glad the security guard apologized, but disappointed to hear the comment from the supervisor. You’re right – they have no idea how hard it is to deal with this while having compromised lungs. Such a tough thing to go through!

      Take care,
      Char.

    • #25058
      Susan Howitt
      Participant

      Hi Charlene,

      Face masks became obligatory here in all shops and closed spaces as from the week end and recommended in all open spaces away from home. Did the guard stop the gentleman with his mask under his nose, no.  Seems here it is the regulation mask or I have to educate, both should be allowed.  I have, from day one of the pandemic worn a medical visor with the closed in top, I agree open topped ones are no protection, personally I think good visors are best as they protect the wearer and others whereas the mask, only if treated properly, protects the public.  Love living out in the sticks but they are stuck in the dark ages here and act like sheep, order to wear a mask  means a tissue MASK  and nothing else.

    • #25059

      Hi Susan,

      Thanks so much for writing and providing this update. How frustrating that despite the bylaw of masking, and the guard addressing your shield, he wasn’t even wearing it correctly! Sorry this was a tough experience for you, and hope you don’t endure this kind of treatment in future.

      Sincerely,
      Char.

    • #25268
      Reshma Joshi
      Participant

      Hello everyone!

      Hope everyone is doing well.

      My mom got hospitalized yesterday. She was having problem with her breathing and her heart rate was very fast. We switched to oxygen cylinder with maximum level that is 11 but still her o2 was hardly 90. Then we decided to take her to the hospital. They put her in ICU for a whole night and shifted her to general ward today morning.

      Her doctor said she has around 50-60% lung damage and gave us the same timeline as before. Can anyone please explain about this percentage of lung damage? Also I have read that a man can live to certain amount of years by having just one lung. How much is it true?

      Any information can be very valuable to us 🙏

      Warm regards,

      Reshma

    • #25269
      Susan Howitt
      Participant

      Hi Reshma

      Sorry to hear your mum has been hospitalized, hope they can stabilize her and that she come home soon

      I also have 60% lung damage.  What ever version of lung fibrosis one has, it is invariably progressive, with some people faster or slower than others and each form (mine is CPFE) different than another

       

      Cordialement  Sue

    • #25278
      Reshma Joshi
      Participant

      Hi @susan

      Thank you for your reply ❤️ Hope my mom can go home soon.

      Warm regards,

      Reshma

    • #25286
      Mark Koziol
      Participant

      Hello Reshma, sorry for the late response. When I had my lung transplant I was at 45% of lung function and was on 4-5 liters of oxygen at rest and 6-8 liters at exertion. I wasn’t doing to well. When doctors are making their treatment plans they will also use your 6 minute walk test and X-ray. It seems where the scarring is situated has a determining effect on lung function as well and the need for supplemental oxygen. As for living with one lung, most people can live a full life with one lung. They have to make modifications as their conditioning will not be as strong as someone with two working lungs. Best wishes for you and your mom, Mark.

    • #25484
      Patricia Williams
      Participant

      My dr wants me to keep my o above 90 as well Charlene. When I am exerting myself it drops to the low 80’s so she has me bump it up another number. I am having as issue with a runny nose since I am on o pretty much 24/7. Anyone else having this issue.

    • #25485
      Susan Howitt
      Participant

      Hi Patricia

       

      Oh yes perpetual runny nose, thought it was just me.

    • #25546

      @prwillie

      Hi Patricia,

      Thanks for writing, though sorry to hear of your saturations dropping on exertion! I’m glad the doctor adjusted your 02 needs accordingly. Do you find it a little better to manage now that he’s done that? I don’t have a runny nose due to 02, so I’m sorry I can’t contribute any tips around that, however, I get dryness in my nose from the oxygen. Perhaps someone else can share how they deal with a perpetual runny nose for Patricia?

      Char.

    • #25842
      Reshma Joshi
      Participant

      Hello everyone!

      My mother has been using O2 supplement 24/7 from last 8 months and then we bought a Oxygen concentrator called Oxy-Med, Model MAOXY 05 and we have 2 small cylinders for back up. Previously the amount of oxygen flow was enough from the concentrator through nasal cannula but these days (after almost 8 months of using) she’s not getting enough flow of oxygen from the concentrator even with the highest level which is 5L. We have to put at the highest level even while she’s sitting but her O2 is hardly above 90 which is equivalent to 5L-6L in the cylinder (the highest on the cylinder is 15L). Even with the highest level on the concentrator now through oxygen mask, my mom’s O2 fluctuates alot. So my questions are:

      1. What is the highest level in oxygen concentrator?

      2. Should we change the oxygen concentrator with a better quality one or it’s more or less same with all oxygen concentrators? My mom’s doctor had suggested to purchase an American one which is apparently a better quality. Have anyone of you have used this american one?  Can you guys suggest which is a good quality oxygen concentrator?

      3. Is anyone using oxygen mask?

      We’re very confused so please feel free to suggest anything 🙏

      Best regards,

      Reshma

    • #25843
      Susan Howitt
      Participant

      My O2 levels fluctuate wildly too, my levels are rarely above 90 and as low as 55 with little effort. Luckily for me at rest I don’t need O2, but am waiting to have  the little op to double check that I now have PAH (pulmonary arterial hypertension) as my need for O2 has drastically increased in the last three months, my POC is no longer (setting 5, its max) enough, cannot even walk a few yards without dropping drastically, was able to walk 2 kms in late July. With Covid about there are no pulmonary beds available at the moment even though, or maybe because, I live out in the country.

      Cannot help you re concentrators (max 5l) as mine is supplied free by the health service.

      Please don’t be offended but are you cleaning the filters free of dust and changing the lines frequently enough, I ask because during lock down my supplier didn’t come and I used the lines for 2 months each and one almost completely blocked although nothing was visible at all.

    • #25848

      Hi @reshma ,

      Nice to hear from you and thanks for updating us on your Mom’s condition, though I’m really sorry to hear that her need for oxygen has increased. It’s really important to ensure that the source of 02 – be it a concentrator (stationary or portable) or cylinder – is providing her with enough supplemental oxygen. Unfortunately, portable oxygen concentrators (POC) are very limiting for people who require a lot of oxygen; most only going up to 5LPM and even that is dependent on how active a patient is doing (and ‘litre per minute’ is also a bit vague). I only use my POC when I travel, because it is a lot easier than coordinating cylinders but the amount of 02 I can get is a lot more on my permanent concentrator or my tanks. It might be worth explaining the numbers to your Mom’s doctor and asking for a permanent/stationary concentrator for your home as these have higher flows, or bigger tanks.

      We can’t recommend a concentrator for your Mom unfortunately as we aren’t medical professionals or know her prescribed 02 needs. It would be good to have this discussion with her doctor or even 02 provider though, they may have some better solutions for you! Let us know how it goes if you’re able to talk to the physician 🙂

      Char.

    • #25850
      Reshma Joshi
      Participant

      Hi @reglois and charlene
      Thank you both for sharing your experience. About the oxygen concentrator, we’re only using stationery home concentrator which has the highest level of 5LPM. So I was wondering if there are other better stationery concentrator with higher level (higher than 5LPM) ? Also she’s wearing an oxygen mask these days instead of nasal cannula because a nurse had recommended to do so for a better effect. Is it safe or okay to wear mask all the time?

    • #25852

      Hi @reshma ,

      Oh so sorry, I misunderstood what kind of concentrator your Mom is using at home. I’m not sure which concentrators/if any exceed the 5LPM. However, this is information your Doctor would know or even the oxygen provider, they might have some additional recommendations. I/we cannot recommend the use of the oxygen mask frequency, this is something only a medical professional can advise. Can you ask the nurse who made the recommendation?

    • #25853
      Susan Howitt
      Participant

      I have read of people doubling up on concentrators if they can’t find one high enough for the patients use.  This maybe be something you can discuss with your doctor. How this is attached to a cannula I have no idea.  Is it a cheaper option?  Don’t know.

    • #25858
      Janey Henderson
      Participant

      Thank you to everyone contributing to this thread. It answered questions I didn’t even know I had. I have noticed that when I’m super tired my oxygen levels are low.

    • #25859
      Mark Koziol
      Participant

      Hello Janey, it is most likely the low oxygen causing your tiredness. I’m going to assume this usually happens in the late afternoon or early evening. I had same problem. I was usually strongest during the morning and early afternoon hours. Thank you for engaging in discussion. Take care, Mark.

    • #25861
      Randy
      Participant

      There are sure alot of people today talking about oxygen. So I am going to join in with my experience. I think I have told everyone when I first joined the group that I am new to IPF. I was in the hospital the beginning of the year for 3 months and in rehab for a month to learn to do things again. The hospital is where I found out I have IPF  after they did some exploratory surgery. It was shocking to find out I only have 1 lung left. I was wondering why I was always so tired and just couldn’t do much of anything. I was told that it started along time ago and it was possibly caused from chemicals. That I couldn’t under stand because I hadn’t worked with chemicals t hat I could remember. Then it dawned on me. In 1976, I worked for Owens Corning and had been working with chemicals. I asked the doctor how can something that happened so many years ago cause this problem now. He said it stays in your lungs and meteralizes at a later date.

      So, that is how I got IPF. I was told I had 3-5 years, but not the starting point. The oxygen level I need is never below a 5 and that is setting still and sleeping at night. If I get up to do anything, which isn’t much anymore, I have to go up from there. Usually 6-7.  My oxygen machine doesn’t go that high, so they had to put 2 together so it would go to 10 if need be. I have been reading how peoples oxygen level is in the 90s. I wish my was. Very rarely is mine that great. My best is 88/89. It has been lower. I also have afib, which doesn’t help the situation at all. My heart rate goes all over the place. It goes from 40 to 135 to 60. So, I am constantly on the watch for those 2 figures to make sure I am going okay. If not, I have to set till things get back to normal.

      We all have pretty much the same problem, the lack of breath. But we also have the same desire and that is to live to see another day, grandkids and kids and of course your mate. I have been doing a lot of studying of the different drugs being used in experiments. There are a lot and some are to be out next year. The only 2 that are out now have a lot of side effects that I don’t want to have, so I do the best I can with a couple that my doctor prescribes. They help on the caughing and are suppose to help on holding back a little on the scaring.

      Everybody, I wish you a good afternoon and a long life.

      Randy

    • #25864
      Susan Howitt
      Participant

      That is how I got CPFE too Randy 30 years ago was the origin, started to rear its ugly head four years ago.  I have nearly passed the date of the doctors dire prediction, still here and on my feet.   Surely you cannot have IPF when you disease was caused by chemicals, Idiopathic Pulmonary Firbrosis is from an unknown origin.  Non Idiopathic  PF tends to run a different course from Idiopathic PF  Like you I am not prepared to ruin what I have left of my life by taking Orfev nor Esbriet, they have also offered me CellCept, just as bad as the other two and wiping out completely the immune system, no thanks not with Covid around.  They now think I have Pulmonary Arterial Hypertension but no hospital beds available because of the pandemic, so I just have to wait and hope I can hold on as my need for O2 has rocketed and my machines can no longer supply what I need.  If I sit I can stay around 89/92  even without O2 but move I plummet to inbetween 55 and 69 with O2.  The coughing is horrible isn’t it?    Stay safe everyone

    • #25882
      Randy
      Participant

      To Susan Howitt, I know what you mean about how can chemicals be the problem from years ago. I thought the same thing and chemicals? My doctor said that the “Idiopathic” does mean unknown, but in my case they had determined it to be chemicals. All I could say was okay. I knew nothing about the disease at that time. Thru studying different articles on the internet and reading what everyone has to say here I have learned alot more. I have been studying any article I  can find  about the different medicines that are being studied and developed. There are alot in the works. The ones that are inhaled seem to have the best results so far. They go directly into he lungs and don’t have to travel all over to get to the actual destination. Total there is 20 currently in the study. Right now I am on prednisone and NAC. One helps with hurting and the  other is suppose to slow down the scaring. Hopefully it does. I was starting to get a cold and was put on doxycycline hyc to curb that. I was told if I get a cold and it turns into pneumonia which would put me into the hospital and I probably wouldn’t walk out since I only have 1 lung left. Well, that is what I have to say today. Be careful and have a good day.

    • #25883
      Susan Howitt
      Participant

      Hi Randy

       

      Do you have the emphysema along with your Fibrosis.  I have a fistful of complication  Fibrosis, Emphysema which equates to CPFE plus Bronchiectasis and Systemic Scleroderma the latter is the b……..r.  I was highly allergic to one of the inhaled drugs, and reading up on my CPFE it is also something that is not advised for that disease, I am left with very little choice.  I also take Prednislone 10mgs (called that here) tried NAC, again allergic so that was that.  I also have to take Omiprazole for GERD (thank you SS) and gababentine for the coughing, started back on that the day before yesterday as my rib cage and throat hurt so badly and was coughing up blood.  I haven’t much lung capacity left either, I was down to 30% maybe more now.  There is very little information here, even the professor doesn’t seem to know much about what I have and treats me for IPF which doesn’t follow the same course at all.

       

      Stay safe

    • #25884
      Reshma Joshi
      Participant

      Hello Susan and Charlene
      My mom got hospitalized again today. This is the second time she got hospitalized in 2 months. She was not getting enough oxygen since yesterday so we had to take her to hospital. Fingers crossed 🤞

      Susan, you wrote about doubling up the concentrator. What does that mean? How does it work? We’re having a hard time finding a concentrator which has more than 5LPM. The provider was saying they haven’t imported such high level concentrators yet in Nepal. So this doubling up concentrators might be an option for us. Also if anyone has such experience please share 🙏

      Reshma

      • This reply was modified 7 months, 3 weeks ago by Charlene Marshall. Reason: formatting to remove code
    • #25889
      Susan Howitt
      Participant

      Two 5lt concentrators in tandem, making 10 ltrs (I believe some one on here has that system) although I don’t know how they link up.  There has to be a little gizmo that links the two concentrators to the air line. rather like in fish tanks, NOW there is an idea !!  I do have some of those !!  I would like to know too as I am waiting to go into hospital to get assessed  to see if I have PAH and for a higher concentration of O2 as severely struggling on what I have now.

      Hope your mother recovers again soon and that you can find the answer to a higher O2 output.

    • #25890
      Susan Howitt
      Participant

      Hi Reshma

       

      Knew I had seen some one on here with concentrators in tandem, they are using three in tandem  it is participant Sarv Punj  @sarvpunj  (July 14th 2020)  I hope he answers for you.  Please share if he tells you how to combine them

      • This reply was modified 7 months, 3 weeks ago by Charlene Marshall. Reason: tagging
    • #25927
      Janey Henderson
      Participant

      When I was first put on oxygen the 02 team told me the funniest question they’d been asked was “can you overdose on oxygen?” The answer was no.

    • #25946

      Thanks for sharing that Janey! Believe it or not, I’ve heard that question asked too. Glad your physician was able to clarify it for you and thanks for reiterating it to the group 🙂
      Char.

    • #26072
      Susan Howitt
      Participant

      Hello one and all

       

      Just come out of hospital, what an eye opener, just knew my *professor of pulmonology* was wrong.  He told me I needed to learn to breathe properly (July 2020) when I had my six monthly review and he had also now got it in his computer that I have IPF, no I have CPFE and have had that since initial diagnosis in 2016 confirmed MRI scan in 2018.  I went to my GP and asked to be referred again to a lung doctor more locally who actually listens.  Hospitalised, scanned my fibrosis has spread to the top and bottom of both lungs, hence my inability to breathe on the 2 litres the professor kept me on, said he was thinking of upping my resting oxygen to 3 litres, don’t need upping at rest. After loads of testing local lung doc has found I need to be on 6 litres per minute when doing any moving about at all.!!! Got these HUGE tanks and a POC that I have to fill myself from these oxy tanks, hopefully will soon get the hang of it, also have a 15 metre line to the big tank for when at rest on 2 litres per minute.  Oh the relief of being able to move about again, my daughter is coming round soon and we are going to take the dogs to my usual forest walk and see how I go now, haven’t been able to walk the dogs in a couple of months, looking forwards to it though I know I have lost a lot of condition being idle since beginning of August.  We are in lockdown but I am so isolated I know I can get away with driving the dogs the 6 kms to the forest, have to carry a legally signed document saying why I am out and about and so does my daughter sign that she is aiding a vulnerable person.

      stay safe one and all

    • #26073
      Reshma Joshi
      Participant

      Hello @reglois

      Nice to hear from you and happy that you’re daughter is coming to visit you. I have came to Nepal last week for my mother. I’m taking full care of my mother which I couldn’t do before. My sister who is a caregiver can relax a bit now since I’m here for the family. Have a good time with your daughter and enjoy your time.

      Warm wishes

      Reshma

      • This reply was modified 7 months, 1 week ago by Charlene Marshall. Reason: tagging for correct username
    • #26075
      Susan Howitt
      Participant

      Hi Reshma

      Glad you are now able to be with your mum.  Have you sorted her oxygen needs because what I am now on might be the way for you to go especially as your Mum doesn’t go out much.  my tanks go up to 7 1/2 litres a minute and I am now sure there are higher ones.

      My daughter doesn’t live too far away so is now coming daily to help me, with Covid about she and her husband have no work and no money so I can help them there. I hate having to rely on her as she is ill herself and in pain most of the time but there are a couple of things I really cannot do cos I can’t bend with out completely cutting off all O2

      We are in lock down here again.

      Stay safe

      A bientôt   Sue

    • #26156

      Hi Susan,

      Thanks for sharing, although gosh: how frustrating that the doctor wouldn’t listen to you and your 02 needs were compromised! So sorry that happened. I bet you feel totally different now that your oxygen needs are being adequately met, and I’m glad you have the equipment at home to support that. Take good care and enjoy being able to walk the dogs again, I hope that went well for you!
      Sincerely,
      Char.

      • #26296
        Susan Howitt
        Participant

        Afternoon Charlene

        Very disappointed, the first back pack was calibrated wrong, no wonder I was feeling so darn good and walked 3kms with 4 stops to get my levels back up, I now know it was delivering me about 8/9 ltrs per minute,  new back pack delivers 6 lts  and I still can’t walk the dogs as the track is very slightly undulating and that is the problem though I do get puffed going round the super market too.  Got the oxygen suppliers expert coming round next week, wondering what I can persuade him to do so I can continue to lead a life, can’t be doing with this inability to exercise.

        Take care one and all.

        • #26299

          Hi Susan,

           

          Oh, I’m sorry to hear this – that is frustrating, and I can certainly see how it’s disappointing! I hope the 02 suppliers can shed some light on additional options that will help you remain mobile. I know walking your dogs is important for your mental and physical health.
          Take care,
          Char.

    • #26290
      Vishal
      Participant

      My dad is also on oxygen 24/7 – putting it a higher flow rate has helped with his coughing. We also started him on Ventolin nebulizer (bronchodilator), which seems to be helping. If this stops working, we’ll get him on Gabapentin maybe.

       

    • #26295
      Susan Howitt
      Participant

      Hi Vishal

      For my diseases, CPFE, bronchodilators are dangerous so it is said

      quote  *It is important to point out that the presence of emphysema and abnormal changes in pulmonary vascular bed in these patients may be associated with an imbalance in the ventilation/perfusion ratio (V/Q), as hypoxic vasoconstriction is one of the main mechanisms to avoid worsening arterial oxygenation. These vasodilator drugs can worsen hypoxemia by inhibiting this mechanism*.

    • #26648
      Reshma Joshi
      Participant

      Hello!

      I have a question does humidifier help to reduce cough to some extent? My mom’s coughing has increased a lot lately so someone suggested me to put a humidifier in her room, may be this will decrease some coughs. Can anyone suggest me if it’s a good idea?

      Best regards

      Reshma Joshi

      • #26656

        Hi @reshma ,

         

        Nice to hear from you, though so sorry to hear your Mom’s cough has gotten worse. I can’t confirm or deny whether a humidifier would help the cough, and I don’t think anyone on this site can with certainty either as we aren’t medical professionals, but we can share our experience. Whenever I get a cold, I always use a humidifier to help with my cough, and mix Vick’s vapour rub with it as well and it seems to help. I don’t know if there is a difference between a cough associated with an acute virus (like a cold) and a chronic cough and whether the humidifier would help in the same way, that is a good question for an MD. However, it might be something to try for your Mom as it would be a non-invasive, relatively easy thing to try. Let us know if it helps. Thinking of you!
        Char.

    • #26649
      Susan Howitt
      Participant

      Glad to see you back Reshma

      I am now on liquid O2 big cylinder that supply 6 lts per min, (3 of them) my O2 providers are bring, this Tuesday a Y connection so that I can have two cylinders joined together to go higher, up to 12lts if necessary. 10metre supple tubing so I can get about the house, I up or down the O2 as needed depending if I am at rest 2 1/2 and when moving 6lts. Each of these cylinders has  a water bottle that the O2 passes through before getting to my lungs, cannot say I have noted any reduction in the cough sorry, mine is also a lot worse,but if your house is dry and too warm just put a big jug of water in there. I always have a kettle of water in my lounge as a humidifier.  I also have a smaller portable cylinder that I can use to get to my bedroom where the cylinder is that I use for sleep, that is on 2lts plus another one in the car, a tiny emergency one, just in case, had to use it once already while I get used to the portable liquid O2 back pack, 7 lts per min max, didn’t realise that is runs down even when not in use !!!

      Stay safe.    Sue

    • #26654
      Reshma Joshi
      Participant

      Hi @susan

      Thank you for your reply. It’s getting harder for my mom because of too much cough esp during night and morning time. Oxygen concentrator doesn’t help her anymore so we have 3 big oxygen cylinders and 2 small. She needs 6-7 Lpm while sitting and up to 12-15 Lpm when she goes to bathroom. She’s not been able to brush her teeth lately because she can’t take off her oxygen mask so we are giving her mouthwash . She’s using high concentration mask all the time which has limited her to take care of her body.

      It’s very very hard for us to see our mother suffering like this 😞💔

    • #26655
      Susan Howitt
      Participant

      Hi Reshma

      Glad to know that you now have the big cylinders  and two little ones like me, great help.

      I find Vicks vapour rub very helpful for the coughing at night, I rub it on my upper chest and up my neck,  haven’t yet used it by day, maybe a little under her nose might help too, I find it helps with the tightness in my upper chest and eases the discomfort so I can sleep a little.

      I know that your mother and I don’t suffer from the same disease, with mine my sitting and sleeping  needs are pretty low,  2lts, but shoot up the minute I move which is a right pain because I am alone and have to use one of the small cylinders on wheels,  to get to the big cylinders to turn them up or down, tomorrow I get the Y connection because 6lts is no longer enough when moving.

      I am lucky to have my daughter come every other day to do what I can’t, frustrated that it is now most things, absolutely refuse to let her do everything and will keep going until I really can’t.  Snow here now so I have to be a bit self sufficient but I know I can call on a neighbour if things get too bad, my daughter lives high up almost at the top of the mini mountain so gets snowed in well before me as I live half way down,  very close knit little community here, only 10 houses in our tiny hamlet.

      Take care   Sue

    • #26690
      Reshma Joshi
      Participant

      Hi @charlene
      Good to know about your experience with humidifier and vicks vapor rub. I’ll try to contact my mom’s physician about humidifier and whether it may help or not. Thank you.

      Warm regards,

      Reshma

      • This reply was modified 5 months, 2 weeks ago by Charlene Marshall. Reason: Formatting to remove code
    • #26691
      Reshma Joshi
      Participant

      Hi Susan

      It’s nice to hear that your daughter is visiting you frequently. It is very very important to have good times with your family. After all family is everything ❤️🙏

      Warm regards always,

      Reshma

    • #26824
      Reshma Joshi
      Participant

      Hello!

      My mom has swollen feet since few days. Is it a normal side effects from steroids or is there anything to worry about? Does anyone have such experience with swelling?

      Best regards

      Reshma

      • #26830

        Hi Reshma,

        Thanks so much for writing, though so sorry to hear your Mom is dealing with this! I’d highly recommend connecting with her doctor about the swollen feet. Many times, this isn’t something to be concerned with but it also can be connected to serious issues, like problems with the heart. It’s best if your Mom’s medical team shares their thoughts with you about this, because they’re also aware of the medications she takes, level of disease progression, etc.
        Goodluck!
        Char.

    • #26825
      Susan Howitt
      Participant

      Hi Reshma,

      I have severely swollen ankles and feet at times, always fairly swollen, if I drink too much water they get a lot worse, so it is a fine balance between drinking enough but not too much, also I sometimes put my feet up on the wall (when in bed) for half an hour, higher than the rest of my body to help drain the fluid, not able to exercise much these days though I still walk around as much as possible,  because of course on my own there are things I just have to do for myself, let the dogs out and in again, have a huge garden so not too bad for them when my daughter cannot walk them for me because she is snowed in..

      • This reply was modified 5 months, 1 week ago by Susan Howitt.
    • #26827
      Reshma Joshi
      Participant

      Hi @susan

      Thank you for the info.

      Take care. Sending you a warm hug.

      Reshma

    • #26837
      Ben Robinson
      Participant

      Get some low dose Lasix prescription  from your doctor and clear that up before it damages your skin and all.  Low dose is no side effecta but you will pee a lot.

    • #26838
      Ben Robinson
      Participant

      Take enough oxygen say 2 liters to get your oxygen sat above 90. She may require higher levels upon exertion such as walking around when the blood moves faster through the lung.

    • #27014
      Reshma Joshi
      Participant

      Hello!

      My mom now has a complete loss of appetite since few weeks. She says she feels full all the time and doesn’t want to eat. She feels bloated all the time and whenever she eats she has pain in the upper stomach. We have talked to her doctor and they recommended medicine for Gastric twice a day but it doesn’t seem to help her. Can anyone please recommend anything? 🙏

      Best regards

      Reshma

       

      • #27075

        Hi @reshma

        I’m so sorry to hear of this new struggle your Mom is having with eating and the abdominal/stomach discomfort. This disease is so unfair! I’m curious, when you said you spoke to her doctor about it, was it her lung doctor? If you can, see if he/she will refer you to a gastro physician who might be able to further investigate the cause of this bloating and “fullness”. I can’t say for sure of course as I am not any type of medical professional, but I’ve not heard of this being common with IPF. I wonder if there’s a secondary issue (could be small) that a gastro MD would be able to figure out for your Mom. Let us know and goodluck!
        Charlene.

    • #27015
      Susan Howitt
      Participant

      Hi Reshma

      Sorry have no advice.  I have to use Omeprazole once a day because if I don’t eating is a very unpleasant experience.  I eat every four hours day and night, mostly soups so that I can sip and nothing big *lands* in my stomach. I cannot eat anything spicy, shame I used to love a good curry, nothing too sweet either and I never add salt, not at all good when on steroids.  I have a huge amount of water in my legs and stomach area, was given water tablets but they did no good t all, if anything made matters worse

      There is a food supplement that Charlene recommends (doesn’t exist here and the one that does is disgusting) I forget the name of it. So for me soups are preferred, I am not yet losing a lot of weight.

      This wretched disease seem to be a lot harder on the carers than the patients, luckily nether I not my daughter are stress type people, what will be will be is our motto.

       

      Take care, stay safe.  Sue

    • #27031
      Reshma Joshi
      Participant

      Thank you dear @reglois I will definitely decrease the amount of salt in my mom’s meal.

      Stay safe and take care

      Reshma

      • This reply was modified 4 months, 2 weeks ago by Charlene Marshall. Reason: tagging
    • #27045
      Ben Robinson
      Participant

      I have a PH doctor who gave me a prescription for TYVASO inhaler which cost my insurance $15k per month.  It has worked well in giving me the ability to work out and get around better.  I try to keep oxygenated to minimize the vasoconstrictions and vasospasms also as your soft tissue sends messages to your body to close off the poorly oxygenated areas and asks your heart to pump faster causing SVT or Arrythmia.  TYVASO is a vasolidator which expands your veins small arteries vessels and capillaries for four hours a round but then allows the increase blood flow in the veins to expand them more permanently it seems in my case.  If you have good insurance, but i think medicare actually covered it. I have a 39 PH score which is borderline severe and it was confusing the pulmonoligist who was blaming my lungs.  I said why am i short of breath when my Saturation level is in the 90’s.  So He says go get a transplant- their favorite line bleating from the mouth when they dont have technical answers and basically say go play lung russian roulette. Many doctors do not understand PH.  Vasoconstriction PH is a common development in ILD PF patients.  Dont let them tell you PH is all arterial calcification either.

      The PH also brought along with it the lower extremity and mid section fluid which i have under control with flurosemide 20 mg a day or as needed and regular drinking of a couple glasses of water per day, elevation of feet and legs and compression stockings.  hope this helps.

      • #27071

        Hi Ben,

        Thank you for sharing your experiences with us — I agree, PH is a very complicated disease also and made worse when a patient also has an ILD. Really glad to hear your insurance covered your inhaled medication, $15K is pure insanity for a medication. Take good care and stay safe!
        Char.

    • #27046
      Ben Robinson
      Participant

      I have been using the Millennium M10 stationary concentrator for in home use with a humidifying bubbler and high flow cannula up to 10L with the long green hose.  Then i use the Caire Sequal V portable rolling unit at 6 L pulse with high flow cannula to get around.  I use 2 liters sitting and sleeping with a low flow cannula.  Very happy with these machines.  I hope this information helps.

      I also had loss of appetite with my PH and ILD PF but no real bloating. I am down to my early High School weight before football. It got a little better as my PH and lung oxygenation healed a bit.  These gastric issues sound like a job for a doctor(s) and could have varying root causes unfortunately.

       

      • #27072

        I have no doubts that the information you shared about your concentrator preferences will help others, Ben! Such good information to have, especially from a fellow patient. Thanks for taking the time to share it with us.
        Charlene.

    • #27051
      Randy
      Participant

      Hello Susan and everyone signed in. I was going over the long list on oxygen that I have read many times, but each time we have a new addition, so it makes it informative. Susan, the last time I signed in you had asked if I also have emphysema and yes I do. I also have afib, cad and a few more illnesses. My home concentrator only goes to 5 like pretty much all of them. It got pretty bad this past summer and fall, so had 2 get a 2nd one and run together. Boy, does that make a bedroom hot. Anyhow, this past fall I went back down to using just 1 and it works okay now. Well see what happens this spring and summer when I am outside more. I hope to do some yard work, that we’ll have to see too. That is my 2 cents for today. Everyone have a great day.

    • #27055
      Susan Howitt
      Participant

      H Randy

      Sorry to hear you have a catalogue of complaints like me, doesn’t make life easy.

      Can imagine how having two concentrators running at one makes a room unbearable beside the high electric bills, happy to read that you have managed to get back down to one and are hoping to do yard work in the Spring, brilliant, hope it comes to fruition. I am now on liquid oxygen as the concentrator just wasn’t anywhere near enough, struggling to go out now as the max on the liquid O2 back pack is 7 litres per min, and it is soooo cold on your back, also it doesn’t suck in every passing germ as do the concentrators, as I am on my own I have to shop for myself now and again..  Happily I have had to change pulmonologists, was made to feel that the oh so highly qualified professor, washed his hands of me when I refused to take Esbriet and another two equally  horrible pills, preferred quality of life to quantity, my life, on the liquid O2 back pack there is no way it lasts out to get me to the original hospital and they haven’t the means to refill so much happier with a less qualified doctor and actually tests my needs and doesn’t just ignore.

      Stay safe every one   Sue

    • #27079
      John Garner
      Participant

      Hello, I have only been diagnosed with IPF since last June. So far I only have mild symptoms. I been taking Ofev for about two months. Can anyone tell me on average when do people with IPF have to start taking oxygen? My O2 level is about 93% at rest. This forum is very helpful but sometimes discouraging to hear how some others are doing.

       

      • #27081
        Susan Howitt
        Participant

        Hi John,

        Doesn’t seem to be a formula as to when people need to go on O2. Apparently some can go for years and others go down hill faster.

         

        Hopefully you are one of the former

         

        Cordialement   Sue

      • #27082
        Mark Koziol
        Participant

        Hi John, unfortunately this disease is quirky. Every case is different. There is no set timetable for when a patient is prescribed supplemental oxygen. At any time there could be an exacerbation and all of a sudden a person can go from no o2 to a high amount of o2. Although, there are some patients who are experiencing difficulties there are many who are living with a high quality of life. It sounds like you are doing well. Please stay active as you can even if it’s walking everyday. Keep living the best life you can. My hope is for you to never need supplemental o2. Have a great weekend, Mark

    • #27090
      Dave Sabatelli
      Participant

      The results of my recent 6 min walk test indicated that I qualify for supplemental oxygen during exertion. I now have a OxyGo Next oxygen concentrator. I am very active so I’m trying to adapt portable oxygen in my daily life.  I also believe that I should try to keep my oxygen level as closes as possible to that of a normal person (94 -97).  Unfortunately I don’t know when my level drops (I believe I can feel < 80) but I would like to know sooner. I do have a finger pulse ox meter but it takes time. I think wearable technology is the answer. Has anyone found anything that works? I’m looking at the Apple series 6 watch but haven’t made a decision.  Also how many of you carry your portable oxygen in a backpack while working, like in the guarding, light construction work, walking etc?

      Dave Sabatelli

      • #27101

        @alberto

        Hi Dave,

        Thanks so much for writing, though sorry to hear your 6MWT qualified you for supplemental oxygen. The adjustment to life with it isn’t easy so I hope you’re treating yourself with some grace around this. I use a backpack for my 02 tank (D sized) but haven’t found a good one for the concentrator I use. It’s relatively heavy so if it isn’t over my shoulder via the attached strap, I’m pulling it around in the cart.

        It’s so important to note oxygen levels below 89, because it can be damaging to your other organs if you aren’t getting enough 02. I would imagine you’d feel anything below 80. I do have the Apple watch 6 to monitor 02 levels, and am seeing some interesting trends. There was some literature released questioning the accuracy of the Apple Watch 6 and the 02 readings. However, I’m finding it interesting to see my levels and find them to be reflective of how I feel (I think anyways!). This feature, coupled with all the other safety features of the Watch was worth it for me to trade in my 5, so the series 6 didn’t cost me very much with the trade in value. Not sure if this helps? Feel free to DM me if you have any particular questions.
        Charlene.

    • #27093
      Susan Howitt
      Participant

      When I was able to be more active I wore my back pack to do everything, living where I do pulling a trolley would have been a right pain and very restricting and ex broken collar bone made it out of the question to carry a shoulder version, you soon get used to the weight and after a while I hardly noticed it, mine with a double battery was 10 kgs and they go up to about max 3 litres a minute on 6.  A finger oxymeter should be virtually instant, how ever you do have to stop then put the thing on your finger, you can’t wear it and expect an accurate reading when on the move and yes you can feel 80 and below, me I got lightheaded and my vision went blurry.  I now have a liquid O2 back pack, even heavier when full and that goes up to 7 l per minute, now not enough sadly.

      Stay safe   Sue

    • #27156
      Bill Kelly
      Participant

      I thought you all might be interested in this. I just signed up for my next 5 years oxygen supply and I noted the 1st Medicare payment to the supplier for Liquid oxygen. How about $74.18/month? Of which I’m responsible for 20%, though my gap insurance pays it. Do you wonder why DME suppliers are loath to supply it. A plumber charges $60 just for a visit. There may be more coming in on the next bill, I’ll keep you posted. That was actually December’s bill so there might be an increase for 2021. And remember that in the US payments cease after 3 years but the supplier must continue free for the next 2 years

      Bill

      • #27158
        Susan Howitt
        Participant

        Hi Bill

        Lucky to be here (France) where I pay absolutely nothing for my oxygen, don’t even have to have an insurance, in fact as some one with a life threatening disease I don’t pay a penny for any care, cancer and heart disease also come under this heading, it is all paid for by the governments health care system. Have to pay for the odd medication monthly, I cancelled my health insurance as it was at 70€ a month and the medication came to 7€ monthly !!!! guess which I would rather pay.

        • #27159
          Bill Kelly
          Participant

          Susan
          I assure you that money is not my problem with ipf.

        • #27160
          Susan Howitt
          Participant

          Hi Bill

          No I wasn’t suggesting that money was a problem for you, just stating how lucky I was not to have any worries at all on that score over here.  I know it can be with some insurances or lack there of, can be critical for  others, reading about the costs of some vital medications over there, if accurately reported.

           

           

    • #27161
      John Garner
      Participant

      Are there any of you that have IPF using a CPAP machine when you sleep? If yes, does it help or hinder you? I have been using a CPAP for about two years now and in fact, I think that is what damaged my lungs. They (University of Washington) can’t find anything specific. They said I have chronic hypersensitivity pneumonitis. My pulmonologist diagnosed me with IPF. I had a blood test in Oct. and it came back saying I was allergic to several types of mold. I used to not clean my CPAP  but once every two or three weeks.  Now I have an electrical cleaning machine and I clean it every other day.  I am on Ofev but not supplemental O2. My O2 level is around 93% at rest.

    • #27190

      @warlock

      Hi Bill,

      Thanks for sharing, this is interesting information about liquid oxygen. It’s so hard to obtain here where I live! Keep us posted on whether the cost increased next bill, I’d be curious.
      Char.

    • #27201
      Bobbie Hovey
      Participant

      I actually have a question about using a portable oxygen concentrator.  Do the concentrators have a filter to filter out fine organisms such as Covid.  If I go out and wear a mask but am using the concentrator, which is pulling air from my surrounding area, does the mask do any good?

      • #27203
        Susan Howitt
        Participant

        Sorry to say that any virus germ etc is sucked directly into your lungs, so mask no good at all.  A  bottle of liquid O2 is the only answer.

         

        Take care   Sue

      • #27207
        Bill Kelly
        Participant

        Bobbie
        They all have a filter but it’s very course. It would stop a fly but not a virus. An oxygen cylinder, either gas or liquid is much better. On a plane it’s Hobson’s choice, you can only use a POC. I read that the filters on an airliner will filter out viruses but the airports remain dangerous.

        Bill

    • #27214
      Floyd C Montgomery
      Participant

      Hi all.  I am 85 years old and I’m in the final stages of this disease, and have been on oxygen 24/7 for over 3 years.  My needs have increased as it progresses.  I currently use 15l just to walk, and have 2 concentrators hooked in tandem to supply what I need in the home.

      My pulmonologist has set my goal to try to stay above 89%, and I can do that as long as I do not exert myself.  I know we are all different in how our bodies use oxygen,  but I know I would have been dead a while ago if not for the rather heavy use that  I do.  I have sleep apnea,  and have oxygen going through it as I sleep.  The flow is 15 l, and I know I don’t need that much at night, but my pulmonologist said it doesn’t hurt to have it that high, but that may because of how bad my lungs are at this point.

      My main reason for writing this is to assure victims of this disease that they should not hold back from using oxygen to make their lives easier.  It is much better to have a little more than you need than to not have enough.  Low levels not only damage your organs, it makes your life much harder.  I wish all of you well.

      • #27216
        Susan Howitt
        Participant

        Hi Floyd

         

        Like you I am at stage 4, it is it happening very rapidly, in the last 2 months I have doubled my O2 needs, cannot move without dropping below 69 blood O2 even on the highest number my machines go up to, being supplied with a Y joint next Tuesday to join my 2 cylinders together, atm I often have to have two sets of prongs up my nose, not the most comfortable thing. I am adjusting my O2 levels myself, cannot wait for pulmonologist appointments (three months apart) my O2 delivery guy is a sweetheart and he can see what I need and delivers accordingly (free, liquid O2) my situation seems unique on this forum, I only need 4 lts per minute, same for sleeping,  if I just sit, but the minute I stand am gasping for air, and have have the two prongs up my nose delivering 12lts, wheelchair being delivered this week for trips out for my sanity. I like you Floyd I say to people use as much O2 as YOU feel you need, it is just too dangerous and uncomfortable not to.

        Take care all.   Sue

    • #27238
      Jonathan Poland
      Participant

      Don and Mark,

      I’m replying to a comment from several months ago… Finger pulse oximeters are NOT ACCURATE IN SUNLIGHT. The sensors in them get overloaded. If you exercise inside and get a lower reading when doing the same exercise outside,  then your finger oximeter is likely giving you a low reading when outside. They are also not accurate for persons with darker skin.   Don’t depend on them too heavily.

      • #27249
        Mark Koziol
        Participant

        Hello Jonathan, thank you for sharing, this is good info to know. Take care, Mark

    • #27239
      Bob
      Participant

      Hi,

      I have just started to use liquid oxygen from a flask for moving around. It was supplied with a nose canula but I seem only to breath properly through my mouth as my nose just can’t let enough oxy in.  I have just bought a small face mask to use and that seems to deliver oxygen to my lungs a lot more efficiently.

      Any comments or tips from those who have more experience in self supporting use of oxygen?

      Bob

      PS And it is really cold here which seems to make breathing outside even more troublesome.

      • #27245
        Susan Howitt
        Participant

        Hi Bob

        I am a mouth breather too and have had to train myself to nose breathe. Never even considered face mask. I have found that if I lie on one side or the other that side nostril tends to bung up so also have had to train my self to sleep on my back, in a half sitting up position. Don’t need high concentrations of O2 to sleep 3 or 4 litres but when I move it is a lot higher, up to 10/12 sometimes now.  Covid is keeping me away from hospitals and pulmonologist (also in foreign country) so having to make my own decisions re O2. Luckily my O2 supplier will allow me to have what I need weekly with no questions, and even offer suggestions.

        Oh yes the cold is a killer, if you go out use some form of snood or face covering to warm the air before it gets to your lungs.

        Take care   Sue

      • #27246
        Bill Kelly
        Participant

        @bob-osborne

        Bob,
        How much O are you using. The “bottles” that deliver the O differ greatly. Helios 850 and 300 need a special canula that senses your inhalation through one nostril and delivers the O through the other. This is a problem if you have a blockage in either nostril eg a deviated septum. There is another special canula that works in this situation. Your supplier should know what he’s given you and you can research it on the net. There is a line called “strollers” but you’d have to look them up. Same company as Helios I think it’s Caire.

    • #27268
      Bob
      Participant

      Susan and Bill,

      Many thanks for your advice. This explains a lot to me. I have the Oxygen people coming back on Monday to train me a little on the types of Canula!

       

      Bob

    • #27269
      John
      Participant

      Hi all,

      I  learned the other day that oximeters (at least mine) do not function in cold temperatures. I haven’t been using mine recently, because I don’t want to take my gloves off to use it. I made an exception the other day after finishing my daily walk and got no reading–either initially, or even after a few minutes indoors.

      John

      • #27272
        Bill Kelly
        Participant

        Yes John, this happens when your hands are cold. Rubbing your hands together fast and hard will usually warm them up enough to get a reading,

        Bill

    • #27373
      Jofac O’Handlin
      Participant

      Dear Participants,

      What a long thread, with much interesting comment.  I was prescibed oxygen in December 2019 following an ‘iffy’ 6 minute walk test. I tried a portable bottle on a walk but found it of little apparant benefit.  So, for the last year we carried on doing our evening walk of between 2.5 and 3 miles. This included a rise and fall of about 120 feet, without oxygen. Admittedly slow up the hills.

      Suddenly, at the end of January, 27th, 28th, I hit the buffers. The walk uphill home was a real struggle. What had changed?  The symptom change that I noted was that before the exacerbation my resting O2 reading would be in the 92 – 95 range. Following the exacerbation my resting rate had dropped to the 86 – 89 bracket. So, out came my bottled oxygen. As has been noted on this site, it became necessary to raise the O2 levels into the mid 90’s just to maintain basic good health.

      Result is that I am now effectively tied to a gas bottle. It has been quite a change, and a learning process. For example the necessity to use O2 to walk upstairs to bed, and avoid a chronic coughing attack.

      As I am in the UK and on the NHS, next week I see the local ‘physiology ‘ department about prescribing an oxygen concentrator. This to minimise the delivery of O2 gas cylinders.

      To realise that I am entering a critical period is really sobering. Learning to manage the oxygen, and to continue to get exercise.

      Re the nose cannula,  I like others find outdoor exercise in cool temperatures and the oxygen causes my nose to run, thus breathing in through the nose becomes most difficult. My horizons have really shrunk.

      Thanks to all participants for your comments.

      Regards to all, Joe

      • #27376
        Susan Howitt
        Participant

        Dear Joe

         

        Just one warning about concentrators, as you are in the UK, they do not have filters that deal with Covid, so either use your bottled O2 when out in any sort of company or get a liquid O2 back pack, that involves having a huge cylinder (I have three + two small ones) in your home to use around the house with 10 metre hose  and also fills up your back pack which doesn’t *breathe* in the surrounding air.

         

        Take care all   Sue

      • #27383
        Bill Kelly
        Participant

        I urge you to move heaven and earth to get liquid oxygen (LOX). Ideally you should have a stationary concentrator for sleeping and around the house if you need it. Use LOX for activities. I get 1 delivery a month. The container looks a little like a Dalek. I then fill a portable container (In my case Helios 850 Marathon) but there are others. I was using 10 or 12 gas cylinders/week in an attempt to remain active. Google Caire oxygen and you’ll see a lot of portables. By a coincidence my LOX in its backpack weighs about 5.6 lb, the same as a gas cylinder in a back pack but the LOX lasts all day. You have to keep the reservoir on the ground floor for safety reasons.
        Keep us posted,
        Bill

      • #27385
        Bill Kelly
        Participant
    • #27384
      Susan Howitt
      Participant

      Each country seems to have different systems

      I have huge cylinders that I fill my back pack from,and use for my O2 needs,  tried to find the literage but not anywhere visible, I use one and a 1/4 of these cylinders per week for my O2    (weekly delivery)

      Wish my back pack lasted all day because of my O2 levels  it only lasts 1 and a 1/2 hours and even then I struggle

      Insurance company needs to be informed if you have O2 cylinders in the house.

       

      Take care Sue

    • #27401
      Jofac O’Handlin
      Participant

      Hi Susan and Bill,

      I will find out next Thursday what might be offered. I suspect that due to ‘Health and Safety’ issues, and the fact that our island of about 75,000 may not have installed an LOX facility. Fingers crossed! The sudden dependance on O2 has been rather depressing,  but hey, chin up and all that. May take a portable bottle tomorrow and go to a motorcycle trial. I used to be an official, and observer,  but gave up on that 18 months ago, anticipating the inevitable.

      Thanks for the support.

      Regards Joe.

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