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    • #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
      Moderator

      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 3 weeks, 2 days 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 3 weeks, 2 days 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

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