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Oxygen Therapy

Posted , 6 users are following.

larry49033
larry49033

My COPD has left me with 30% capacity. I trust my Pulmonary Specialist (Dr.) as he has had me try most of the powder inhalers, a nebulizer, and mist inhalers, Each day is a new adventure as to just how good or bad I will feel throughout the day. All too often it is a roller coaster ride that I can't get off of. I must plan just how I will exert each short burst of energy and where I'm going to pause every 12 feet to pant and regain my breath. Taking a bath or a trip to get groceries from the store is a true ordeal. 

When I visit my Dr., he has me do the walk to test my oxygen level as I exert myself. I get 20 feet or so and have to stop and rest leaning on a counter as the Assistant checks the appratius they had placed earlier on my finger. 95 they say, you don't qualify for oxygen they say. I say it's not right that medical providers who would allow oxygen are restricted to prescribing per some arbitrary rule set forth by people that only see money and not patients that should get oxygen. It makes me wonder just how much worse I must get to be qualified for a therapy that I feel would help me greatly. 

Frustrated, yes I am. Oxygen could help me live a better life, but I'm denied because my insurance won't cover it. I can't afford oxygen if I had to pay for it all by myself, yet my Dr told me he would write the prescription but my Insurance would not cover it. 

Better health if you can pay for it yourself. 

0 likes, 26 replies

26 Replies

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  • Vee2
    Vee2 larry49033

    Posted

    A reading of 95 on the oxymeter indicates you do not need oxygen.  Oxygen is prescribed if your arteriel blood gas indicates it, the hospital usually do an arteriel blood gas if the oxymeter shows you are a candidate.

    The doctor who told you he would write a prescription mmmmm not good if indications show you don't actually need it.

    Just keep doing the regular exercise, we all mainly puff and pant, its part of living with COPD, doesn't mean you should stop doing anything, just do it at you own pace, but continue to do it and you may find your breathing improves over time.

    • larry49033
      larry49033 Vee2

      Posted

      Vee2,

      I'm not surprised that you defend the medical/insurance collective. However, other than the cost, I don't see why oxygen is so restricted. I've seen professional athletes use oxygen during sporting events, yet someone like myself does not qualify because some silly arbitrary minimum level is not achieved?  

      I know that my quality of life would be better if I had access to oxygen. In my case it would not be for continuous use, but as an aid to help me as I need it. 

      For me, someone who is actually living day to day with COPD, it just sounds very uncaring to read about how I'm not unhealthy enough to rate something as basic as oxygen. It's not like I was asking for narcotics or some other pharmaceutical. Must one wait until something like oxygen is needed to keep living, or could it not be available as a therapy to help relieve the extreme symptoms that pulmonary patients suffer with and non-COPD  "authorities" just think they understand. 

  • antoinette99244
    antoinette99244 larry49033

    Posted

    I am so sorry. It must be hell for you each day. I assume you do not live in the U.S. Here the criteria is 88% and if you cannot pay Medicaid (the gov't) pays for it if you qualify - meaning little money). 

    I have insurance and fortunately they are paying for the oxygen and it will help you enormously. There must be a doctor an agency that can help help you,. I wish I could do something. Go to another pulmonary doctor  I was told the oxygen is more for the heart than lungs - my pulse is always high even at rest there is an undercurrent of anxiety, so my heart is always beating fast, even though the oxygen level is good....so maybe see a heart doctor.   Prayers are with you.

     

    • larry49033
      larry49033 antoinette99244

      Posted

      I do live in the USA and I get Medicare and Medicaid. I'm fortunate that I pay very little for prescriptions I'd like to exercise , but I just can't. When I go out in public people ask me if I need assistance as I stop to rest and catch my breath. They marvel that I'm not on oxygen.

      My Pulmonary Specialist .is doing for me the best that Medicare/Medicaid will allow. He is a very good Dr. and I can see it in his face that he wishes that he could help me more. He is limited by the standards that are set and he can't risk going outside of those and risking his carrier. 

      As for me, if I feel this poor at 95% Oxygen, I don;t believe that I will last long enough to get to the 88% level.  

  • Zooky
    Zooky larry49033

    Posted

    Hey Larry........So sorry about your struggles.....I for one know they are real. I have emphysema plus !!  Yes I am on oxygen....I am on medicare and they pay for some but.......I still have to pay 50.00 a month.   I can tell you this (about me)....I truly do not think it helps at all.  I can no longer go food shopping without someone with because like you....i can only go so many feet (mine is 5) then have to rest on the cart.  I have a portable oxygen also.....but i do not see any difference if I use it or not.   Remember tho... we are all different. Good Luck on your journey.
    • larry49033
      larry49033 Zooky

      Posted

      I also use the shopping cart as a walker, but I usually shop where an electric shopping cart is available. Following a shopping trip, it takes the best part of 90 minutes for me to get my groceries up a flight of stairs to my very small apartment. Moving the bags up one stair at a time as I follow and rest has become a necessary ordeal that I must endure at least once a month. . 
  • AngelofFL
    AngelofFL larry49033

    Posted

    Hi Larry,

    I'm on Oxygen, when I do the walk test mine will drop to the low 80's but I don't think the oxygen helps that much, I also have a bad heart with a low ejection fraction. When my heart rate goes high my oxygen levels drop. The way you describe having to stop and pant for air sounds like it may be an underlying heart issue? I originally started with a heart problem, that was 17 years ago. Now because of my heart not working efficiently it's affected my lungs. Have you ever had a cardiac stress test? Sleep study? Do you have pulmonary hypertension? I can be gasping for air and put my oxygen on and I still can't go any further until my heart rate slows down. It sounds like even though you have a diminished capacity in your lungs they at least diffuse oxygen correctly otherwise your levels would drop so they are supplying your blood with enough oxygen. Have you discussed this with your doctor? Something as simple as sleep apnea can also affect your heart, just trying to offer some other ideas to check into, good luck!

  • larry49033
    larry49033

    Posted

    My heart, so far, has not been a problem. However that may change as I;m very heavy and the excess weight is not good for my heart. Exercise is not a part of my life as even a trip to the bathroom is accompanied with a period to rest and get my breathing calm and back to a slower rate. Oxygen would greatly improve my quality of life, but I must struggle along in a system that cares more about "Budgets" than people's lives.

  • hypercat
    hypercat larry49033

    Posted

    Hi I am in the UK with the wonderful NHS.  Here oxygen is given not to help you breathe but to protect your other organs.  If your sats regularly fall to around 88 and less then you would get oxygen.  Otherwise you wouldn't.  You also might be an oxygen retainer so the problem is more you can't breathe out fully in order to take a deeper breath.  There are exercises you can do to help this.  In this instance then oxygen is dangerous and would not be prescribed.  

    I hope you find some answers.  x

  • hypercat
    hypercat larry49033

    Posted

    Meant carbon dioxide retainer not oxygen x
    • larry49033
      larry49033 hypercat

      Posted

      I don't seen to know oxygen and it's medical effects. More knowledge on the subject would, I'm sure, be most appreciated. For me, oxygen would seen to be the best way to relieve the all to often distress that COPD is noted for. Many beside myself would like to learn more in this area as it effects us very personally..

      I'll be looking forward to your post, hopefully taylored to help the lay among us better understand oxygen and it's varied end results. 

      Many thanks 

    • Vee2
      Vee2 larry49033

      Posted

      Most every one here has COPD and additional health issues or they are caring for someone who has breathing difficulties.

      Many people diagnosed with COPD do not need oxygen your 95% on the oxymeter indicates you are one of those who do not need it.

      If you desaturate below 90% during exercise for instance you may be considered for ambulatory oxygen to be used for exercise purposes, this is the situation in UK.

      Our doctors won't prescribe oxygen when its not medically needed and in UK the prescribed dose is for the individual patient.  Patient UK information on Oxygen for Medical Professionals ...   https://patient.info/doctor/use-of-oxygen-therapy-in-copd

      Probably when you understand the criteria for oxygen presciption in the US you may appreciate why not everyone with COPD is prescribed oxygen.  Perhaps the Lung USA organisation can provide you with a good understanding of this.

      Noah's FB group 'Ultimate Pulmonary Wellness' may shed some light on this for you also.

      Just do what you can with the exercise, go at your own pace but keep doing it.  Many have to walk and a slower pace, with a need to stop and recover before continuing.

      Best wishes V

       

    • hypercat
      hypercat larry49033

      Posted

      Like I said oxygen isn't given to help you breathe though this may or may not be a side effect.  It is given to protect your lungs if your sats go down below around 88%.  You have said yours are higher than that which is why you don't need oxygen.

      I know many folk online with very low lung function and not all of them need oxygen.  A low FEV1 isn't the main reason why it is used.

      I am no expert and if you want more medical explanation then you need to speak to a professional.  x

  • degb
    degb larry49033

    Posted

    Thank you all so much for this discussion, I am on oxygen, have been for a few years as my oxygen levels drop quickly down to 72, oxygen brings the levels up, but the huff and puff of just everyday activities can become so anxiety driven. I only have oxygen during the day for any exertion when doing anything sweeping the floor, the oxy levels drop to low 80's,  so it's one sweep, rest drives me nuts to think I need oxygen to sweep floor. I am extremely lucky, if you can call it that, I get oxygen for free, here you have to have oxygen levels below 30 with all the tests that go with it. Thank you so much everybody, it really does help to know others are also struggling with this problem. I think any information that we can gather helps deal with daily struggles. Kindest regards to you all

    • AngelofFL
      AngelofFL degb

      Posted

      Do you adjust your oxygen output according to your activities? I'm on 2ltrs sitting but if I'm up moving around and walking or doing housework I have to double it to 4ltrs. My doctor suggested this during my walk test. When you are up and moving your body requires more O2 than when sitting. It helped me tremendously.

    • degb
      degb AngelofFL

      Posted

      Hi there, actually when sitting I do not use oxygen, only for activities or when oxy level is low, I have a finger thingee that tests levels, it can drop quickly and I am not aware of it.  I can achieve 92 on a good day for a short time, cannot if moving hold the oxygen I use 3 for all activities, if activity more than I can take in I have to stop. I can get the air in, but not exhale, thank you so much for your assistance, I will try 4 instead of stopping or trying to push through, 3 for easier tasks. Yeah, thanks, much appreciated your sharing your experience. Kindest thoughts to you. 

       

    • antoinette99244
      antoinette99244 AngelofFL

      Posted

      Doctor send my oxygen level at 2, moderate. I  never thought to change it. I exercise with it, and phy. therapist works with me almost an hour, I can go a bit longer each time with the different exercises, with the 02 set at 2, I did not know we could if we want. I had read on the internet by a doctor that we should wear oxygen at least 15 hours, and breathe in well, so that we can go longer without if needed.  I may try your method.
    • antoinette99244
      antoinette99244 AngelofFL

      Posted

      Thank you, and everyone for their input. I use oxygen at 2 that is where it is set. I do not want to become so use to it. My level at times without 02 for hours is 90 or 92, other times it can drop to 80 but I am not panting, and it will within 1 minute go up to 88 or 90.  So I am doing all the breathing and exercising to strengthen lungs and heart (which is always beating at 85 or higher even at rest. I do not want to think I have to use it all the time - but I may with periods when I do not need it. I try to remain hopeful and upbeat, but it can get discouraging. I do no focus on that. Hope everyone is having a better day today and keep a smile in your heart...it helps. Love to all.
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