Viewing 14 reply threads
  • Author
    Posts
    • #26184
      Colleen Steele
      Keymaster

      When my son started using supplemental oxygen he was on a fairly low rate but as his PH progressed his oxygen flow increased. He reached a point where he had to adjust the oxygen flow throughout the day, depending on what he was doing. When he became very sick and listed for transplant he often had the flow up high. His doctor knew he did this and never told him not to.

      Do you change how much oxygen is flowing out of the tank or oxygen concentrator? If so, did your doctor approve it? Is there a flow he doesn’t want you to go under or over?

    • #26224
      Jen Cueva
      Keymaster

      Yes, I change the flow rate on my oxygen based on my orders. I use 2 liters at night and 3-4 liters with exertion and as needed. I do know that my doctors always say not to go over 5 liters. Others I know cannot go over 2 liters if they have COPD. Has anyone had this order?

    • #26231
      Colleen Steele
      Keymaster

      @jenc there were many times while listed for transplant that I remember Cullen increasing the flow to 5 or higher. When he got really bad and frightened he would do that. He always wore a mask and not the cannula so I don’t think he was always getting the full concentration of it. He never had issues with high flow oxygen but if I could go back in time I would be a little more careful with it because too much oxygen can be dangerous.

      I can recall that when he was in the hospital they sometimes put it up pretty high for him…again, I think it’s a difference between mask and cannula. Anyone else ever use a mask and notice a difference in what flow worked best compared to cannula?

    • #26334
      Mendo Bruce
      Participant

      I change my oxygen flow many times throughout the day. I “titrate to migrate” as Dr. Thomas Petty (The father of Long Term Oxygen Thrapy) used to say. I drop to the low 70’s within 2 minutes of walking on room air.

      I use one liter per minute while awake at rest, 2 lpm when sleeping or when I’m moving my arms a lot while at rest. 3 liters to get up and walk a short distance (like under 20 feet) 4 liters if I’m walking farther, and 5 liters for heavy exertion or when i’m walking on the treadmill. I use a medical grade Nonin oximeter to determine what I need and when.

      I have a remote float valve (the thing with the little ball you use to turn up the O2 flow on your home concentrator). I place it between the tube coming from my concentrator and my cannula. I turn the concentrator up all the way and then use the remote valve to turn the flow up or down. I tied a lanyard around it so I can wear it around my neck so I always have control of my O2 close at hand.

      • This reply was modified 1 year, 2 months ago by Mendo Bruce.
    • #26337
      Mendo Bruce
      Participant

      @jenc I have COPD and I have been prescribed far more that 2 lpm. I am supposed to use whatever it takes to keep over 90 at rest and over 92 during exertion. In fact, they said we should discuss stepping me up from my 5 liter per minute home concentrator to a 10 lpm concentrator as there are times when I can’t maintain my saturation with the maximum 5 lpm when I am pushing myself on my treadmill.

      • This reply was modified 1 year, 2 months ago by Mendo Bruce.
    • #26372
      Alfred Gronroos
      Participant

      Colleen, a great forum. I just met with my pulmonary doctor yesterday and asked him about getting a concentrator that goes higher than the 5 setting. No he said keep it as low as you can go to stay above 90. He claims lungs will get weak if they do not have to work hard. I use oxygen 24/7. I keep it at 4 unless I am using a small tank and sitting in a doctors and then I go to 5 pulse. Gotta make the tank last long enough I do not have to hobble back to vehicle. Sometimes it gets parked a long distance away. I get a good workout before and after doctors appointment. I use a nose cannula with 25 foot hose to get caught everywhere. I use a bi-pap with 4 liters at night. Everyone please be safe. Al in hot Arizona

    • #26385
      Colleen Steele
      Keymaster

      @alfredjohn my son’s doctor gave the same excuse but opposite opinion when trying to get him to use his oxygen. She told him not using the supplemental oxygen was making his lungs work harder which was causing them more injury and fatigue. I think like everything else PH, every person is different and therefore are told different things.

      I should elaborate that he was on a low setting for a while. He was at end stage PH when he was bumping up the air flow to high. His tanks he kept lower but the home concentrator, especially at night, was at a higher flow rate. As I mentioned, he was a kid and for him the mask was more tolerable for him. However, I think a lot of the air escaped so although the flow might have been up high, what he was actually receiving was probably lower.

      Do you have a handicap placard so you can park closer to your medical facility? If not, you should be eligible for one. Ask your doctor.

      Just how hot is Arizona right now? My parents live in NJ and they were 108 last week, which is crazy. I swear it never got that hot when I was growing up there.

    • #26387
      Alfred Gronroos
      Participant

      Colleen, I am in Prescott Valley. elevation 5200 feet so highs have been a hundred. Too hot for us. South it hits 115 or so. In Colorado we had 85 with 50 nights. Sunny so the days seemed warmer even in winter.
      I do have handicap plates on vehicle but there is so many of us elders with handicaps and not enough parking spots. If I get early enough I sit and wait like those other old men. Took a while for me to accept the fact I need and deserve the closer spots. Denial and disagreement.
      The bi-pap c-pap masks are uncomfortable, bad fitting, leaking air but I felt it was a necessary evil. so I am proud of my 100 % usage. Sounds like most do not use them. The bi-pap was a big improvement in my sleeping. Even slept 10 hours last week.
      Do other members get and wear medical alert bracelets, etc? I thought of it but the boss lady kind of shot it down. And I have not mentioned it with any of my doctors. stay safe Al Gronroos

    • #26779
      anne
      Participant

      I use a 5 in the house, but really only need a 3 while seated, but don’t think I know how to get one of those “I have a remote float valve (the thing with the little ball you use to turn up the O2 flow on your home concentrator)” that Mendo Bruce wrote about.

      When I get up to walk from the family room to the bathroom or to the kitchen (takes about 1 to 2 minutes) I start huffing and puffing using 5 — my oxygen level starts going down to the low 80s and heart rate goes up above 110. If I stay longer on my feet — 5 minutes of walking, then it goes down into the mid 60’s and heart goes up to 120s. I tried sitting with no O2 for about an hour, felt fine, but O2 was down in high 70s.

      I’d like to be able to use my 5 when I’m moving and standing, but turn the flow down to a 2 while seated. My concentrator is not plug into the wall near my TV chair or kitchen table. I would need to have what I’m envisioning what Mendo wrote. How do I find one?

    • #26780
      Mendo Bruce
      Participant

      Here is the link for the remote flow meter I use https://www.amazon.com/CNBTR-Acylic-Flowmeter-Acrylic-Fitting/dp/B019YS4PSG/

      It is very inexpensive ($12) and hooks up between the long hose from your concentrator and your cannula, but there are some things you should be aware of.

      1. It is too heavy to just hook it up and let it hang from the cannula. I tie a lanyard around mine and I wear it around my neck when I am moving about and hang it on something when I am sitting down or sleeping.

      2. The dial that controls the flow is wider than the body of the meter, so if you lay it down and it moves, it can also move the dial and change your O2 flow. (this is why I hang it)

      3 The input (bottom) and output (top) nozzles are very wide and it is very hard to get the hose ends on the nozzles. I find it best to heat the hose ends with a hair dryer and then slip then on. They go on much easier and stay on snug once they cool down. Hose from the concentrator goes on the bottom, cannula goes on the top.

      4. Turn the dial towards more flow several revolutions after it stops going up, then turn the dial on the concentrator all the way up. Now you can turn the flow down on the remote to the flow you desire and you should see the ball on the concentrator go down to the same level as your remote.

      I hope this helps

    • #26786
      Jen Cueva
      Keymaster

      Thanks, @mendo-bruce, for sharing this resource and tips about the remote flow meter. Hi @anne, if you have a DME company, where your oxygen comes from, they may be helpful with ideas on how you can better use this remote flow meter. I am not sure how heavy you are, but wondering if this would be too heavy to wear around your neck. What do you think?

      It looks like most of these are under 3 ounces, so that may be OK. @mendo-bruce, how did you hear of this? Your doctors, DME company, or your own research? Your tips and instructions are well written, thanks for sharing.

    • #26791
      Mendo Bruce
      Participant

      I just happened to stumble onto this. I think I had just typed “Oxygen” in the Amazon search bar and was looking at different products when I saw the flow valve and thought about how I might use it.

      I have had a renown oxygen/respiratory tech tell me that this works exactly like the built in flow valve and that it won’t adversely affect the concentrator in any way. I can’t say whether or not your DMEs tech is knowledgable enough to understand this.

      Oh I also made a mistake on the price, it is no longer $12 but is now $14.40

      • This reply was modified 1 year, 2 months ago by Mendo Bruce.
    • #28985
      carol keilty
      Participant

      Is that true that the more oxygen we use the weaker out lungs get? Does anyone know the answer to that? Living in Canada we get so many different weather changes but by far the summer is the worst. I just stay in the house when the wind and the air are too cold. I can’t breath that in it really hurts. thanks

      • #28986
        Mendo Bruce
        Participant

        Carol,

        That is absolutely FALSE! It is a very common belief (even some primary care docs believe this) but it has been disproven many times.

        You do NOT become more dependent on oxygen by using it more. You can NOT “train” your lungs to need less oxygen by going without it.

        Dr. Thomas Petty is often called the “Father of supplemental oxygen” his research was the most well known that disproved these fallacies.

        Unfortunately, most people who need supplemental oxygen have progressive diseases and as their disease progresses, they will require more oxygen. Using oxygen did not cause this and in fact, often using oxygen SLOWS the progression of the disease.

        • #28989
          Colleen Steele
          Keymaster

          @carol I haven’t followed studies on this but what my son was told leans towards what @mendo-bruce expressed. When my son reached the point of needing supplemental oxygen he fought it until his doctor explained to him that not using it was doing more harm than good. Without it his lungs were working extra hard and becoming more damaged.

          I’ve attached an article that briefly mentions the theory that you can become dependent on O2. It does point out symptoms you might experience if you are using too high a flow. My son started out using supplemental oxygen when sleeping at that was sufficient for a while. When he started needing it 24/7 it wasn’t because of the O2, it was because of the PH. I hope this perspective help.

          Can You Overuse Supplemental 02?

        • #28993
          Mendo Bruce
          Participant

          You will NOT become dependent on supplemental oxygen, even if you use too high a flow.

          Listen to what the doctors told her son, not an article off a very suspect site.

          Too high a flow may cause confusion, headaches and even increased shortness of breath in some patients who have hypercapnia.

          It is never a good idea to base your flow on how you feel, you should always base it on your oximeter readings and stick to the target saturation given to you by your doctor.

          Oxygen is prescribed to treat desaturation, NOT shortness of breath.

          • This reply was modified 8 months, 2 weeks ago by Mendo Bruce.
        • #28995
          Colleen Steele
          Keymaster

          @mendo-bruce well yes, we always tell our members to never base their care off of another’s experience or other sources. We want everyone to discuss things with their doctors before trying something or making any changes.

          When I shared that article it was from a quick search to find an example of supplemental oxygen being more helpful than harmful. Thank you for the warning about the Lung Health Institute. When I read the article I thought it was pretty much saying what you were, that too high a flow may cause confusion, headaches and even increased shortness of breath in some patients who have hypercapnia, not that it would make you become dependent on it.


          @carol
          the main thing we are trying to help you with is that oxygen is more your friend than your foe. If a doctor is telling you otherwise I recommend a second opinion if possible.

        • #28998
          Mendo Bruce
          Participant

          Sorry, I misread your post and hadn’t read the article. Your post only said that the article mentioned the theory that you could be dependent on O2 and I read that as supporting the theory not rejecting the theory as the article actually does.

          I have a lot of anger towards the Lung Institute as I know many patients who spent over $20,000 each on treatments that didn’t work. They, of course, are much angrier than me!

        • #28999
          Colleen Steele
          Keymaster

          @mendo-bruce that is upsetting to hear about. Were people treated directly through them or were doctors going by what they were selling and used it on patients? I assume PH patients were some of the people this happened to?

        • #29000
          Mendo Bruce
          Participant

          They were treated by the Institute. The Institute “explains” how the pharmaceutical companies control the FDA and that is why no insurance will cover the process and most doctors won’t offer the treatment. And of course they have their patented way to deliver the treatment to exactly the right organ which is why others treating with [stem cells/PRP] didn’t have success.

    • #28991
      Mendo Bruce
      Participant

      While using too high a flow could be problematic in certain cases, it will NOT weaken your lungs!

      Also, please be VERY wary of the Lung Health Institute (formerly The Lung Institute) While operating as The Lung Institute they had an extremely professional well designed web site crammed with all kinds of information to help them sell their ineffectual and extremely expensive “stem cell” treatments. They were sued by many entities including several State Attorney generals and eventually closed down. They quickly re-opened with the same doctors and facilities this time offering just as ineffectual and just as expensive “platelet rich plasma” treatments.

      This company represents the worst of the con men taking advantage of sick scared patients as they fill their website with SO much information, some of it is very good and some of it is very misleading. They’re particularly dangerous because they appear so legitimate while offering worthless unproven treatments. Of course, the placebo effect provides a source of testimonials that are their biggest help in bilking others.

      • This reply was modified 8 months, 2 weeks ago by Mendo Bruce.
    • #29001
      carol keilty
      Participant

      Thank you so much for the information it is very helpful. I am right now trying to keep my levels up to at least 90 but they don’t seem to be staying there when I am walking or doing things like walking upstairs and bending over is really hard. I am just trying the oxygen out right now to see if it will help me. I guess everything we do is just trial and error with this condition. Doesn’t seem that there is one thing helps everyone. Thank you very much for your help. Carol

      • #29002
        Mendo Bruce
        Participant

        Many of us need one flow while sitting and another when walking or exerting ourselves. We want to use enough oxygen to PREVENT our saturation from dropping below 90 (remember most oximeters are only accurate +/- 2, so 90 could be 88) My doctor wants me to keep my saturation between 92-96 but I am not hypercapnic.

        As stated previously, oxygen is prescribed for desaturation which may have nothing to do with how you feel. It is common to be short of breath with good saturation or to not be short of breath with poor saturation depending on the patient and the situation.

        The reason we want to stay saturated is to prevent the changes to our heart and our brain that occurs over time if we desaturate. Desaturation is not good with pulmonary hypertension

        • This reply was modified 8 months, 2 weeks ago by Mendo Bruce.
        • This reply was modified 8 months, 2 weeks ago by Mendo Bruce.
Viewing 14 reply threads
  • You must be logged in to reply to this topic.

©2021 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending

Log in with your credentials

or    

Forgot your details?

Create Account