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    • #25879
      Jen Cueva
      Keymaster

      Remember, our bodies are different, so we may exhibit a variety of signs when our oxygen drops. For me, the lightheadedness, dizziness, and a tightness in my chest. My hubby usually notices my struggling for air and my pale/greyish color to the face.

      I came across this older column written by our @brittany-foster. In her column, she offers tips and signs that she looks for when her oxygen is low. Do you know what to look for when your oxygen is low? If so, what are they? Do you use a pulse oximeter at home?

    • #25883
      Colleen Steele
      Keymaster

      @jenc yes, all the things you mentioned is what Cullen would experience when his O2 dropped. When he was a kid he also had a tell when he was trying to ignore the struggle – he would raise his arms, place his hands behind his head and take deep breaths. He started doing that before he was diagnosed and his doctor referred to it as self-advocating before he knew he had to.

    • #25891
      Cindy Moser
      Participant

      This topic is timely because I am struggling with this today. I know my oxygen is low because my lips and fingernails turn a lovely blue. I get a headache and it can be difficult to get a full breath. I also experience difficulty focusing and concentrating.

      I have a pulse oximeter that I was using almost obsessively especially when I exercise. I was surprised to find out that my resting saturation is around 90%. While I am exercising, my saturation goes up. It does take awhile for me to “warm up” and get my air going, and I have to put forth quite a bit of effort at first, but once I get going, my saturation gets up to the mid to high 90’s and I feel pretty darn good. When I stop whatever activity I am doing (usually roller skating), my saturation and energy stays up for hours. The fall seems to come the following day. I have been wondering if anyone else experiences this?

      I try to prevent the next day price that I pay to play by making sure that even though I may feel really good, I use my CPAP machine and oxygen when I go to bed in an attempt to keep my oxygen saturation up. Last night wasn’t so successful. Any suggestions?

    • #25892
      Randy
      Participant

      Cindy Moser,

      I too use a nighttime machine. I, however use a BiPAP machine and like it quite well over he CPAP. One thing I found with the BiPAP machine is that the port on my hose to plug the oxygen tube in to actually has a restriction in it. I found that if I merely put the mask on over the cannula, I get better oxygen delivery.

      While on that note, I have found that the cannula in my nostrils restricts my breathing (I’m primarily a nose breather because I don’t find it necessary to flap my lips unnecessarily), but if I place the outlets of the cannula just below my bottom lip with the outlets pointing towards my mouth, I get a better delivery of oxygen and I breath through my mouth and nose. It also works quite well with the mask on my face.

      • #28391
        Randy
        Participant

        I don’t know about your CPAP/BiPAP, but My BiPAP has a plug-in port for the oxygen tube on the big tube before the big tube connects to the mask. Using a 2litre setting, I couldn’t get my night-time O2 levels above 90 using this port I had to crank the O2 up to 6litre to get even 90% O2. So I abandoned the port and put my canula right inside the BiPAP mask. I would put the mask on over the canula, but that still didn’t work. I know that sounds strange, but I put the canula over my ears like usual, then let it hang to just below my bottom lip, then put the mask on over the canula. Now my night-time O2 runs about 95% on a 2litre setting.

        • #28396
          Colleen Steele
          Keymaster

          @ardyyurtyahoo-com hey, if it helps than nothing strange about it! Anyone else have some unique way they use any of their breathing equipment?

    • #25896
      Jen Cueva
      Keymaster

      Hi @colleensteele, so interesting that Cullen would do that as he was struggling. I often sit with pillows behind my back and hunched over. I always thought that helped, but I learned that that doesn’t allow for my lungs to expand. Now I try not to do that, so often.

      Did he hunch over when he was sitting at all?

    • #25897
      Jen Cueva
      Keymaster

      Hi @cindymoser, You are not alone in the blue fingernails and lips. That was the first sign that my family noticed before I was diagnosed. That is interesting that your O2 saturation goes up with exercise. I have heard from others that this happens. One PHriend says when she is walking if she slows down, that is it.

      I never thought this was true for me. But when I think about it, my hubby always says, I am a “go” or a “no go.” I also “pay to play” usually a day or two, depending on what I did to overexert. I would imagine after rollerskating; you would be down for a day or so. Have you noticed that this has changed for you?

    • #25898
      Jen Cueva
      Keymaster

      Hi @ardyyurtyahoo-com, I am happy to hear that you have found what works well for you. Did your respiratory therapist suggest this? Or, did you find this solution by trial and error?

    • #25932
      Dawn
      Participant

      @jenc, I definitely can tell when my oxygen level is low. I get lightheaded, dizzy, my balance is ‘off’, it feels near impossible to get enough air, and my lips & chin get a purple/blue color. My biggest difficulty is that my ph doctor found that when I stand up and start moving my oxygen level drops, but they don’t know why. He found that a little over a year ago, which is when I went on oxygen. I have a finger oximeter at home, and even when walking around inside my house (without oxygen) my levels drop to the mid/low 70s. When I’m sitting it’s in the 90s. I’ve been on oxygen with my cpap for a few years, and it actually gives me a sense of security. On ‘off’ days, when my breathing is bad, I use oxygen in the house too.

      I had a good check-up last October, but my ph dr was concerned with how long it took my heart rate to get back to normal after my walk test. He switched me from a portable oxygen concentrator to oxygen tanks at that point. It seems to help with activity, but for as good as my right side cath results were last October it’s disappointing how tired I get. As others have mentioned, if I over-do I pay for it the next day.

      • #28392
        Randy
        Participant

        Nope, I just experimented.

    • #25933
      Dawn
      Participant

      Correction: I switched from a portable oxygen concentrator to tanks just this March.

    • #27720
      Jen Cueva
      Keymaster

      This is such an important topic, so I wanted to remind y’all about this. Those of us with PH need to know what signs to look for when our oxygen is low. We also need to remember that everyone’s “low” may not be the same. For me, 87-88 is low, others may be higher or lower, but you generally know.

      Our new members may find this helpful. Let us know if you have questions about low oxygen symptoms.

    • #27727
      anne
      Participant

      I cant get my O2 to stay up when I walk more than 20 steps. I go down below 70 and huff and puff and can’t talk. I feel like I’m taking my last breath. Once I sit for a few minutes, my O2 starts to climb back up and when I start feeling better, I’m up in the 80s and go on to the high 90s. I am on 5 continuous Ox.

      What is the name of the maker and the mask shown in the first blurb?

      I should be on a high # C-pap for my baby breaths, but the mask doesn’t hold still when I move my head during sleep. I haven’t been on the C-pap since I started on O2. How do you get the cannula to continue to work when the mask is squishing the tube?

      Anne

      PS I dont get dizzy, pale, but just cant breathe in enough air and must stop walking and sit ASAP

    • #27744
      Steve Sallee
      Participant

      My CPAP has a fitting (tee) that allows you to plug oxygen into the stream.

    • #27746
      anne
      Participant

      thanks Steve, I’ll check on getting another type of mask.

      Anne

    • #27747
      Steve Sallee
      Participant

      No problem. Its actually the output port at the rear of the machine where this fitting will go. You may even have it already. If so, it will have a cap on it. If this is the case, you can remove the cap, disconnect your cannula and plug the oxygen into it. Then it will add the oxygen to the flow from the machine.

    • #27750
      Jen Cueva
      Keymaster

      Thanks, @exjarhead57730, for sharing these tips with @annefox. I would suggest to her to ask her DME(medical equipment company) to bring her a few different types of CPAP masks to try that may work better for her. I think if she uses it at night, she may notice a difference in her daily shortness of breath. Like you mention, she already may have the fix.

      Did a respiratory therapist not come to your home @annefox to help fit you for a mask? Can you ask your case manager about this or the nurse? This should be something that they can send someone out with the supplies you need and a few different types to try. It sounds like you went into this blind without much direction, Anne. I am sorry that you are having such difficulties.

      How are things on your end this week, @exjarhead57730?

    • #27772
      anne
      Participant

      My Pulmonologist has a woman who brings masks into the office and leaves them for people to try. I haven’t been using one for the past 5 years and so I’d have to go have another sleep done done in order for medicare to pay for a new machine (I think a new mask shouldn’t be too expensive if I have to pay out of pocket).

      I’m seeing my new Pulmonologist in two weeks face to face. I’ll take my old mask and machine to ask about a new mask and to set the pressure for my old C-PAP machine hopefully using my old sleep study test. .Also, I can have him show how to attach and disconnect my O2.

      thank you for your thoughtfulness

      Anne

    • #27786
      Jen Cueva
      Keymaster

      That sounds like a great plan, @annefox. I guess this will depend on if your doctor will do that and how long it has been since the last sleep study. It sounds like it was 5 years ago, is that correct? A new sleep study is probably a great idea because things can change in many ways in that huge timespan. It would probably benefit you the most to do this.

      After you talk with your pulmonary doctor, let us know. This may be something that you can call and ask so you know ahead of time. If you are struggling so much with your breathing, it sounds like things have worsened since your last testing. Take care, Anne, and stay safe.

    • #28356
      Kelli Warden
      Participant

      I’ve never had anything like this & was outside with my husband playing ball with my dog when all of a sudden everything started spinning so quickly & I thought for sure I was gonna fall. I’m so grateful my husband was there, he basically held me up while taking me to a bench. I felt like I was drunk & couldn’t walk straight & my hands were shaking & I was sweating. It never crossed my mind it could be something to do with my PH. I googled dizziness and couldn’t find anything and then I searched for dizziness with PH. I had no idea about something like this & it scary me horribly. I came in & hooked myself up to oxygen ASAP because I was at 83 & my low is under 92. I started feeling better. This is a scary thing that happens & I still have no idea what triggered it.

      • #28357
        Colleen Steele
        Keymaster

        @kelli-paige it sounds like a PH episode and unfortunately, seemingly minor activity like playing with a dog can sometimes trigger an event. The sweating concerns me a little because that could be heart related too. For my son both his heart and lungs were always struggling. It’s a good sign that the O2 helped you.

        If you haven’t already, make sure you report this incident to your doctor. Keep a journal in case another episode happens. Write down the time it happened, what you were doing and the symptoms. This will help your doctor evaluate what is going on.

        I’m sorry you experienced this. I’m sure other members can chime in with similar experiences and how they deal with it. We are here for you. Keep us updated on how you are doing.

    • #28362
      Alfred Gronroos
      Participant

      Hi from sunny AZ. If my oxygen gets low my legs hurt bad, whole body tells me stop, and sit down. I am on 4 continuous on concentrator. I use a cpap at night with 4 from concentrator. I can only walk a small distance before I go low, can not talk which wife has a problem with. She does enough for both of us. My low is 85 good is 90. I haven’t tried what I would need while sitting in my easy to get into chair. It turns into hard to get out of chair. Al

      • #28364
        Colleen Steele
        Keymaster

        @alfredjohn my son use to get a lot of leg pain too and we always thought it was a side-effect from one of his medications. But now that you mention it, low sats might have been contributing to the problem too. My heart goes out to you and your wife. I know how hard dealing with the limitations caused by PH can be. I’m sure you both feel frustrated at times. As hard as it might be, continue listening to your body and rest when you need to. Doing that is as important as the medicine you take.

    • #28372
      Kelli Warden
      Participant

      Thanks @colleensteele, I appreciate the feedback so quickly, it helped me at least calm down. 💜

      • #28376
        Colleen Steele
        Keymaster

        @kelli-paige a big thing that many of our members will agree with is that having support from other PHers helps you feel less alone and stressed. It often feels good to just vent and share with others going through the same thing. Never hesitate to share what you are going through.

    • #28373
      anne
      Participant

      I saw my new/old pulmonologist and he moved me from 5 continuous O2 to 8. I have found out that I still cant walk from my family room to the toilet and not be huffing and puffing. I’m scheduled for more breathing tests to find out WHY I breath fine 95 to 98 with continuous 5(+) and drop down so quickly when walking or standing. 10+ steps, I was down to 69 and dropping using the 8 contiuous flow walking 20+ steps.

      So, @dawnt, if you find out why your Ox stats drop while you stand or walk, let me know. If they figure out mine, I’ll let you know.

      I’ll let everyone know what my breathing tests and heart tests show.

      • #28375
        Colleen Steele
        Keymaster

        @annefox I am so sorry to hear that you are still struggling with your O2 levels with activity. I know this is one of the reasons they do the 6 minute walk test, to monitor this type of problem. I’ll be anxious to hear the results of the heart test. Part of me is wondering if it is your heart and if a pacemaker might help. Either way, I hope you get answers and that your team comes up with a good plan for you. Update us when you are able to.

    • #28380
      anne
      Participant

      Colleen, You give us all good advice and in such a sweet gentle manor. Thank you

    • #28393
      Randy
      Participant

      I have had my O2 get as low as 70 without any signs, to me that’s kinda scary.

      • #28394
        Colleen Steele
        Keymaster

        In the 70’s would be scary to me too @ardyyurtyahoo-com. Has your doctor given you any instruction on what to do when it gets that low? If you reach a certain low does your doctor want you to go to the ER? I hope this doesn’t happen to you too often.

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