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    • #22898
      Reshma Joshi
      Participant

      Hello!

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

      Reshma

    • #22905

      Hi @reshma ,

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

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

      Sincerely,
      Charlene.

    • #22992
      Bob
      Participant

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

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

      Bob

    • #22994

      @bmiller2653

      Hi Bob,

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

    • #23117
      Reshma Joshi
      Participant

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

    • #23137
      Richard L Shelby
      Participant

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

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

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

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

      Richard

       

    • #23144

      @rlshelby

      Hi Richard,

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

      Take care,
      Charlene.

    • #23148
      Reshma Joshi
      Participant

      @rlshelby

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

    • #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

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