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Oxygen
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
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187 Replies
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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. -
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
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@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?
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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?
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I agree with Charlene that cold air hurts the lungs when I hike, cross ctry ski , skate etc in cold weather.
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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
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Richard, just wanted to say that there has been so much discussion and I’m afraid maybe a lot of misunderstanding for lack of the Oxygen and POC Mfg groups not providing consistent and solid understanding to us users when selling units. However, I completely agree with your explanation and it is so important that people understand that we are all dealing with a disease that is variable as to the type each of us is afflicted with and also as to the development stage for each of us personally as well as our own personal bio makeup.
What it takes to achieve 90% saturation for me might just be very different for another based on the variables mentioned. I am not a doctor for sure, and at 83 with 10 years of xrays and scans showing scarring and resistive IPF I only have a few years of actively losing breath to a serious nature. So a year ago I began using an Inogen G4 and progressed from L 1-2-3 within the year. I then moved to an Inogen G5 to stay comfortable even if somewhat inactive. Also, I use an Inogen At-home unit each nite all night set on L4 (which is just an indicator).
I ran all the numbers I could at the time I bought these three units and used my own calculated 20 intake breaths per minute to determine my own calculated intake of likely liters per minute whether pulse or as scavenged from a constant flow.
What I have finally determined for me, is that my recording VuHealth watch (many different units on the market) for oxy and heart rate and other calculations “seems” to be a good and consistent indicator for me as to my oxygen saturation (better than my finger unit) while sleeping or when active and I tend to simply set my portable or at home units to keep me around the 90% marks. Daytime activity can suddenly drop into the high 70’s or middle to low 80’s with some sudden activity but standing or sitting for 3-5 minutes while gasping gets me back into the right saturation ranges, so I feel comfortable most of the time.
I use the “Index numbers on the Inogen units more for comparisons and keeping records than any actual LPM but I do believe they may provide consistency once set to a level that keeps one in the Oximeter” range desired. My personal belief is that I would tend to believe the results of the recording oximeters more than I would give credibility to the Lpm index numbers on any of the machines available to us.
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@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. -
@rlshelby
Thank you so much for your valuable information. We’ll definitely adjust our situation based on your information ?
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@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.
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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 ?
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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. -
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
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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. -
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
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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. -
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
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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
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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. -
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
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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
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@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
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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. -
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.
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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.
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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
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