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    • #17393
      Kenneth Corsette
      Participant

      Has any one been told that too much oxygen can be harmful? When I am sitting I don’t need oxygen but when I start moving around my level drops below 90% in a short time so I bought a home unit thinking I could just use it all the time and avoid the need to wire myself up, as I call it, when I start doing something. I was told that too much oxygen could be harmful to you. Now I don’t know if I should use oxygen all the time. Ken

    • #17418
      Cooper P Abrams III
      Participant

      I am the same as you. Sitting my O2 is mid to high 90s. With activity it drops to 86-90. This has not changed in a year. I use O2 at night with CPAP. This past Tuesday had an semi-annaul CT scan and breathing test. Breathing was five percent better. CT scan was the same. Thus, not much change in 14 months. I only use O2 when I start breathing hard with activity. I do not use oxygen when sitting. I think the reasoning is that if you breathe on your own your are strengthing your lungs. With oxygen your lungs do not have to work as hard. I hope this helps.

      • #17435

        Hi Cooper,

        Thanks for getting in touch and sharing your experience with us! Was it the oxygen levels between 86-90 that qualified you for nighttime oxygen? I think the standard process (if there is one with this disease…) is that under 89% qualifies patients for oxygen, which is why I am hoping Ken can get a script for oxygen use to ensure it is used safely.

        I think you’re right about the importance of making our lungs work harder when not using oxygen, which is of course important for maintaining strength. I also heard too much oxygen can effect the oxygen exchange, and cause a build up of C02 which of course is dangerous. I’m going to look more into it, but I remember being cautioned about using only oxygen as prescribed…

        Talk to you soon and I hope you’re doing well!
        Charlene.

    • #17434

      Hi Ken,

      Although I found it hard to believe at first, yes, I have heard that there are problems that arise with too much oxygen, similar to having too little. It has something to do with the oxygen exchange, and having too much 02 can cause the carbon dioxide levels in your blood to become off balance which can be toxic of course if there is too much. I don’t understand the full mechanics of it, but definitely have heard that too much oxygen can be problematic. I probably wouldn’t use your home machine all the time, especially if your levels are 98+% as you don’t want to have too much. Was your doctor not willing to prescribe you oxygen? He/she should  have been, especially if your numbers drop below 90%.

      Let us know what you decide, and glad you’re monitoring your levels closely to check when you might need the oxygen vs. when you may not. Take care, and I’d definitely recommend speaking to your doctor about this as you should be able to get a prescription for 02 if your numbers are under 90%, I believe it is <89 that you qualify.

      Talk soon,
      Charlene.

       

       

       

    • #17511
      Charles Whittington
      Participant

      My doctor at UAB Birmingham told me that too much o2 is not a problem.  In my case I can maintain low 90’s without o2 (sitting) but my pulse rate is elevated.  When I use o2 my pulse drops to the low 90’s.  Your body only takes in the o2 that it needs so the excess is just breathed back out.  Stressing to obtain o2 also is asking for the onset of pulmonary hypertension and other organ deterioration.

      My desire to not use it was just an ego thing.  If you wait to feel discomfort to use it, then damage is being done to your system.

      • #17529

        Hi Charles,

        Thanks so much for sharing this – always interested in hearing if pulmonologists/specialists say about oxygen use. I completely agree with you about the importance of not being chronically under-oxygenated, or struggling too much as this can cause an onset of other issues, like PAH as you say. However, I certainly thought that too much oxygen can cause an issue with carbon dioxide build up, but maybe this is only if your saturations are normal and someone is using oxygen? It does make sense that if your sats are low then too much oxygen isn’t an issue, as it would bring them back up to normal ranges. Not sure, but always curious to hear input from others so I appreciate your sharing. I know UAB is a great centre!

        Take care,
        Charlene.

    • #17526
      Janet
      Participant

      Hi I just wanted to tell you that yes I have heard my husband’s doctor say that too much oxygen is not good either,  but they seem to be talking more about a person with pulmonary fibrosis would not need to have an oxygen level over 98 . Another thing I would like to note to people with this was my husband‘s primary doctor keep asking him to go get his eyes checked which he wouldn’t do so finally I made an appointment to get my own eyes checked and his also .   We found out he had advanced glaucoma due to not using oxygen earlier in his fibrosis like he was supposed to. He went for four years never using it he would just let his self run out of breath and then collapse in his chair. After talking to the eye doctor he said your  your optic nerve has its own blood supply and it needs a lot of blood in by him doing that he was depriving the optic nerve of blood. Now I’m just saying what he told us and now my husband has to put eyedrops in his eyes every day or you’ll go blind that’s what made him start using his oxygen all the time the fear of blindness

    • #17530

      Hi Janet,

      Thanks so much for sharing, this topic seems to be of interest to many people and the “jury” (ie. doctors) seem to be a bit inconsistent in their answers. I suspect the problem with too much/excess oxygen is when our saturations are higher and supplemental oxygen would make them 98-100+. This makes sense that it is when it could become an issue with gas exchange, and building up too much C02. So much to learn!

      Really interesting to hear about your husband’s eye exam, although so sorry it revealed a glaucoma. I had no idea this could be a problem due to under-oxygen use, and sorry to hear you both had to learn this. I am glad he now uses his oxygen though and that the eye drops will hopefully prevent any further deterioration. Wishing you both nothing but the best and thanks again for sharing.

      Charlene.

    • #17621
      Richard L Shelby
      Participant

      There is a lot of confusion on this topic. One can read details elsewhere on the Internet, but the short answer is this: Too much supplemental oxygen can be hazardous for a patient with COPD. Many people read or hear this and think that it applies to all lung disease, however it does not. There is no problem of “excess” oxygen for IPF patients. Problems of gas exchange and CO2 buildup can occur in COPD patients but not in IPF patients. Someone with IPF does not need to be concerned with getting too much oxygen.

      Before you had IPF, your body worked to keep O2 saturation at 95-100%. Now that you have IPF, use your supplemental O2 to try to maintain that level. Don’t worry about your O2 saturation getting too high — in fact, in this case there isn’t such a thing as “too high”. 100% is the maximum and it is quite acceptable for a healthy person or an IPF patient to have 100% saturation although 95% is generally sufficient.

      Too low O2 saturation is a problem: It not only makes you feel bad, it damages your body. When the O2 saturation gets too low then there is not enough oxygen to meet the needs of the cells and over time this will cause organ damage.

    • #17628

      Hi Richard,

      Thank you so much for joining us and contributing to this post. I had no idea about the information you shared, so it was really helpful to learn the difference between the impact of excessive oxygen on COPD and IPF patients. I must have been hearing about how too much oxygen can cause gas exchange issues for patients with COPD, and assuming it was for all lung diseases. Your explanation does make a lot of sense! And yes, I completely agree about the 02 being too low and risk of cell and organ damage. This is so important for everyone to note – that oxygen deprivation causes damage beyond just feeling unwell.

      Thanks again for writing!
      Charlene.

    • #20776
      Carolyn
      Participant

      Sorry about the above. I copied from a notepad and pasted into the ‘visual “ tab in the Reply field. Here goes again:

      My husband has recently started O2 therapy and was not given clear directions or perhaps he has forgotten.
      When I had recent occasion to submit an application for Ofev medication help, I noticed in the physicians summary that it seemed to suggest he would only need it when ambulatory. However, he has been using it the in the opposite manner- while sitting for long periods in front of the TV- but not using it when he’s out of the house or for here & there inside (which incidentally he was able to do for the most part as long as he wasn’t carrying things or otherwise exerting himself.) I suspect that his lungs are used to getting enriched air at rest and so upon getting up, one would expect him to have difficulty breathing easily without the extra O2 concentration. (I think the problem is that he is embarrassed about wearing the oxygen and thinks somehow he can make up for it or “store it” when in actuality he is increasing his need for it.

      So based on my observation that he is less able to walk to the bathroom or to the other side of the house with out getting out of breath, I must conclude that it is NOT helpful for him to use oxygen when his lungs are doing fine; in other words, he is using too much and creating a dependency where there was none before. He comes from a family that has about the least common sense about sickness and about maintaining a healthy lifestyle that I could have ever imagined. He will not listen to me and his PT will not start until September so I suspect I will need to reach out to the practice. He mentioned something about the nurse who gave him the walk test saying he “needed to be on O2” is this the person I should try to get in contact with to counsel us?

      • #20793

        Hi Carolyn,

        Thanks so much for writing about this topic – it is tough one because even when our doctors prescribe the use of 02 a certain way, our bodies feel the need for it differently. I remember being prescribed a certain LPM (litres per minute) awhile doing physical activity and that was okay for awhile but then it wasn’t enough so I turned it up a little higher and had to wait until my next appointment to ask if the amount I was using was okay. Is there an opportunity coming up (ie. a doctor’s appointment) where you could ask for clarity on his 02 use?

        I mentioned this above as well but I’d heard somewhere that you can’t have too much oxygen for IPF patients due to the low 02 in the blood when our lungs aren’t pumping enough (whereas, you can have too much o2 with COPD and cause problems), but I can’t be sure this is true. I think your theory sounds right, and it does make sense to me but certainly worth connecting with your doctor about or even the 02 provider. The last thing I’m sure both of you want is to create an increased need for oxygen instead of keeping his lungs strong and working hard. That said, you also want to ensure his other organs are adequately oxygenated, it is such a fine balance! I’d try to get in touch directly with the pulmonolgist who ordered the oxygen, just so he can review the reports and tests suggesting your husband’s need for oxygen. I know doctors are often hard to get ahold of – does he have a nurse working with him (NP) or a physicians assistant? Worth an ask to them if the doc is hard to track down.

        Thanks for writing!
        Charlene.

    • #20797
      Carolyn
      Participant

      Thank you, Charlene.  That is helpful.

      He has an appointment on September 12th that I am going to, but I think I will try to get him to conference the nurse with us on the telephone this week. We’ll work our way up to the doctor if necessary, but it seems simple enough.

      Take care,

      Carolyn

      • #20802
        Cynthia
        Participant

        A little off topic, but the nurse coordinator/practitioner in your pulmonologist’s office will become your best friend. Mine is very accessible and knowledgeable. She is almost always able to answer my questions, and she’s the one who oversees my oxygen needs.

        • This reply was modified 1 year, 8 months ago by Cynthia.
        • #20807

          So glad to hear this Cynthia, thank you for sharing! Definitely a great resource for folks to know about and glad to hear the NP is helpful and accessible for your questions 🙂
          Regards,
          Charlene.

    • #20806

      Hi @carolyn,

      No problem, I hope you have success connecting with your doctor directly ahead of the appointment on September 12th. I know for me, sometimes waiting even a month feels so daunting when I am desperate for answers. If he will ever be eligible for transplant, the pre-transplant coordinator at your hospital should be able to help as well, I truly don’t know what I’d do without mine! She is wonderful. Otherwise, I hope consulting with the nurse can get some answers for you. Keep us posted and feel free to write any time, we’re here for you!
      Charlene.

    • #26652
      Sam Gilmore
      Participant

      What a great topic. I have been on oxygen for about year have had IPF for about 4 years. I use oxygen when I am active but when I am resting I do not use it all the time only when I feel a need for or get panicky which happens. I will use it to bring my lungs back to the 90s. I do think its important to try an strengthen the lungs as much as I can. Thank you all for this helpful information. Sam

    • #26671
      Ben Robinson
      Participant

      You can absolutely take too much oxygen. Google Oxygen Toxicity. Very dangerous. I have been suffering from it and it inhibits my ability to take oxygen. Then oxygen burns and causes pneumonitis lowering saturation levels further.  Once you are stricken the only cure is to sit still and minimize your oxygen usage. Obviously a disaster. I am on month 2 very slow healing. Probably caused more by high flow oxygen and exertion or exercise.  Take only that which is necessary to stay above 90 or 85 at the lowest. Most doctors don’t know this. Mine say “I don’t do oxygen!?” And dole it to the nurse. who knows little. Please be careful with over use of oxygen. For what it’s worth. 6 year PF Vet. Still alive by studying the medical websites.

    • #26686

      Thanks for sharing this Ben!

      This is something I need to work on understanding better (from a physician), because I think oxygen toxicity or the potential for it is different for each respiratory disease. For example, I know the air trapping is different in COPD vs. IPF on a physiological level but I don’t quite understand all of it. I’ll have to do some research, but so sorry to hear you had this experience and that the healing is very slow. I hope you continue to improve, and thank you for sharing this experience with us all.
      Char.

    • #26711
      Anne
      Participant

      I’m still confused about too much O2.  I have been moved to 7 since I plummet when I walk over a minute.  Even the 7 doesn’t.  My pulmonologist has been taken to the hospital and I dont see my new doctor (a 2nd opinion doctore new practice) for a couple of months.  Anyway, I think 7 is too much for sitting since a 3 keeps me at 91/92 and a 5 keeps me at 93/94  — 7 keeps me at 99.

      Any suggestions???

      anne

      • #26724
        Mark Koziol
        Participant

        Hello Anne, I would speak to your physician and relay him this information. It’s possible he could rewrite your script. He would have to perform several tests, one being the 6 minute walk test. No one on this forum could to tell you to adjust your liters per minute. Hopefully your doctor will be able to provide you the answers you need. Happy new year Anne, Mark

    • #26763
      Ben Robinson
      Participant

      It is standard to have three different oxygen levels – one for resting, one for exertion and one for sleep.  7 is high flow and should only be used for the exertion as you say. Used all the time it will probably irritate your lungs as it did mine. The 3 sounds about right for rest and maybe even 2 for sleep.   This break in high flow should keep you out of trouble until you see your new doctor. A bubbler on your stationary concentrator helps with the burn. I love the Millenium.

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