This topic contains 24 replies, has 6 voices, and was last updated by  Jen Cueva 1 month ago.

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  • #20645
     Jen Cueva 
    Participant

    I am not sure about y’all, but the “regular” nasal cannula at the hospitals and usually given to adults is too big for me. I have found that Salter Labs makes a micro-cannula that is much smaller and shorter. It fits much better in my nose and on my face. I get mine from Apri( My O2 supplier), they are a special request item, but they will get you them if you ask by number, etc..

    For me, I was not wearing my oxygen as often because it was so dang uncomfortable for my smaller nose. Do you have these issues? If so, have you found other cannulas that work well? If not, I hope that you can find the micro-cannula. I often switch to mine when at the hospital and then just leave it and replace it when I get back home. They always seem bothered and I found it a hassle to ask them to find one. Just a tip that I have learned.

  • #20654
     Brittany Foster 
    Keymaster

    Jen,
    Honestly I really like the cannulas that are provided to me at the hospital. They are soft and cushiony and not that hard plastic kind with the piece that sticks out! I’m sure you know the ones that I am talking about. I actually take a bunch (like a handful) from the hospitals when I am there because they are super comfy. They have a green part of the cord that plugs into the oxygen and the part that goes into your nose is clear but soft and flexible. I don’t like the cannulas that are too stiff, it bothers my nose a lot and if that was my only option I probably wouldn’t be compliant with wearing it either!

    • #20668
       Jen Cueva 
      Participant

      Thanks for your feedback, Brittany. Do you happen to have a package from the hospital to see who makes them and the model? It sounds like they are a great fit and comfy for you. That certainly makes a difference, and I know I wear mine more as I should if it is comfortable.

      • #20672
         Brittany Foster 
        Keymaster

        I will have to find the ones that are still in the packaging and I will definitely let you know!

    • #20778
       Robin Webster 
      Participant

      Exactly this!!! Of course the size of it is an issue (I do prefer the smaller size) but for me, the material it’s made of is of supreme importance. No matter how I ask my medical supplier for it, they always agree to send me the ones like I have had in the hospital (very soft and pliable) and then they just send me the same stupid hard ones they have always sent. UGH! Finally this month I just broke down and got on amazon and sprung for the $40 out of pocket and bought myself a case of the ones I want. I know it seems like a waste of money when my insurance pays for the medical supplier to send them, but I think since I’m the one “suffering” all the crap, I ought to get to ask for what I want/need within reason. At least with the really soft kind, I don’t find myself dreading going to sleep and having to put it on. I can’t imagine how anyone who is on oxygen 24/7 could wear those horrid stiff and hard ones all the time. And those ones even irritate the tops of my ears, dang it! I just love the soft ones. I can post the link of what I ordered if anyone is interested.

      • #20784
         Brittany Foster 
        Keymaster

        Robin,
        Feel free to post the link! That would be great. I know a lot of people look to get those softer ones. I had some trouble with my oxygen company saying they were going to send them to me and them being the ones that were only soft at the cannula piece and the rest was that hard stiff plastic. You are 100% right that it does hurt your ears and is just uncomfortable to wear. If we are going to rock the oxygen then we might as well have every right to make it at least feel good for us and not disturb us or add to our discomfort through the day. Seems like a logical request!

      • #20786
         Colleen Steele 
        Keymaster

        Robin, I think that is why my son ended up preferring the mask to the cannulas. He just never found one he felt comfortable with. He was just a kid at the time too and with all he was going through, we all decided to not battle him on this and let him use what was most comfortable, as long as it was providing enough assistance.

        @jenc I asked Cullen and he said he felt the mask was less restricting. The air bothering his nose too much with the cannula. The other thing he likes about the mask was he could push in it to force the air into his nose and mouth better when he really needed it. He recommends keeping both on hand, mask and nose cannula.

      • #20790
         Brittany Foster 
        Keymaster

        Colleen,
        both would be a good choice to have, especially if you are bothered by the cannula or need the extra boosts of oxygen that the mask can probably give better. I remember having to use the masks when I had colds or couldn’t breathe through my nose well. It helped to deliver the oxygen better, especially if my sinuses were blocked from infection, allergies, med side effects etc.

      • #20802
         Jen Cueva 
        Participant

        @robin-webster, so true, comfort is where it is at. Yes, please share more information on the ones that you get on Amazon. I have another PH friend who orders hers by the case on Amazon as well.

        @colleensteele, Cullen certainly makes sense about that mask offering more air., almost like a boost. I think that having both on hand is a great idea. I think I will ask and see if I can get a few of both. Do you know which masks he used? I know there are so many different ones.

      • #20807
         Robin Webster 
        Participant
      • #20855
         Jen Cueva 
        Participant

        Thanks for sharing that link for the cannulas, Robin. I’ll see about getting some as my hubby is the King Of Amazon, lol

        He orders everything on there, I just make my list to add to his, hehe

        I hope that you’re getting some cooler weather. Our cool front came in yesterday.

    • #20914
       Margie Novak 
      Participant

      Jen, thanks for giving the name of the company for your oxygen tubing. I went on their website and ordered one. I especially liked that you do not have to pay for shipping (that is what you get charged for the most). I ordered one just to see how it works for me. Since I am on high-flow I need order high flow cannulas. The thing I hate most is they get twisted and I can hear the oxygen. Can be annoying… will let you know how it works out!!! Again thanks.. that is why it is good to be part of this forum… you lern so much!!!! take care

      • #20919
         Brittany Foster 
        Keymaster

        Margie,
        So true! You really do learn so much from forums like this and it’s great that many of us are also on different time zones because messages and words of advice seem to be happening so frequently through the day. I’m glad that Jen’s link can help you. Be sure to keep us updated on how that cannula is working out for you. I hope that there’s some more comfort with the high flow rate one thay you ordered
        I know those aren’t ever that comfy.

      • #20953
         Jen Cueva 
        Participant

        My pleasure, Margie. I hope that they work well for you. Please keep us posted.

        This is a great place where we can learn from one another. I learn new things constantly.

  • #20682
     Colleen Steele 
    Keymaster

    Jen and Brittany,

    My son refused the wear the nasal cannula’s. He always wore the mask instead. The concern with the mask is you tend to lose a lot of the oxygen. His doctor recommended a certain type that we got through ACCREDO. I’m sorry, I can’t remember what it was not, but we brought it with us every time he was admitted to the hospital. Surprisingly it was never an issue, the hospital allowed him to wear his mask from home.

    A few weeks prior to transplant he was starting to use the cannula’s more because his breathing was worsening. His doctors always managed to convince him of what he needed to do but when it came to this, he wouldn’t budge. It’s funny because I’ve known people who hate the masks but that is what he preferred.

    • #20701
       Brittany Foster 
      Keymaster

      Colleen,
      I don’t think I have ever worn the mask but I bet I wouldn’t wear it out in public so the oxygen cannula would be better for that. I probably would have a hard time with the mask because of my ptsd with masks and anesthesia and associating them with surgeries and being put to sleep. I have a hard time wearing the bipap mask for that reason and can get pretty claustrophobic when I wake up with it on. It has been awhile since I actually wore it though because of how bad my reflux is.

    • #20735
       Jen Cueva 
      Participant

      So crazy, that your son prefers the mask over the cannulas. Like Brittany, every time that I have needed to use a mask, I toss it off. I feel like I am suffocating even more.

      I think that as long as we all find what works best for us, is important. I know if we are not comfortable, there is a lesser chance that we will use it.

  • #20704
     Shannon 
    Participant

    I always get the soft cannulas. The hard ones hurt my nose so much. I have to wear my oxygen constantly at this point. I can’t be without it not even for a few minutes. I also like the ones at the hospital and try to get as many as I can during all my stays. I actually have a box of them at this point. I have tried the mask and it makes me sweaty and my chin break out. And who wants pimples? I don’t need that in my life. Lol I have also tried using Pediatric cannulas, they are small but I felt like I wasn’t getting enough air. At this point the problem I have is my nose on the inside has huge holes , the force of the air over time has left me with not much of a nose left! Good thing I like makeup and can make it look a little better because my nose is starting to collapse.

    • #20723
       Brittany Foster 
      Keymaster

      Oh wow I have never heard if that happening to someone’s nose. Do you have any connective tissue conditions? I know someone on the forum talked about their connective tissue disease but not sure if it was you or not. How do you deal with the discomfort on your nose ? Is it something that they can help you manage? I know what you mean by the smaller cannulas and feeling like you aren’t getting enough oxygen in. Definitely take all the supplied that you can get when you are at the hospital! I always ask my nurses too that I end up getting close to and they hook me up with some good ones and usually a good amount too! I get my money’s worth haha!

    • #20745
       Jen Cueva 
      Participant

      OMG Shannon, I have never heard of this from oxygen usuage! I cannot imagine how this must make you feel. I hope that your medical team may have more about why this may be happening? Are there other diagnoses that may be contributing to this? Although, I hate this is happening. I am hoping this can be a learning experience for everyone.

      How are you doing , otherwise?

      Like Brittany and Colleen have mentioned, I am curious if others have had this issue. I thank you for sharing and hoping you can find out the why and hopefully stop this from happening.

  • #20719
     Colleen Steele 
    Keymaster

    Shannon, I never heard of the holes developing in the noise as you described. This has developed due to long use of supplemental oxygen? I can imagine the complications it must cause not to mention upsetting to deal with.

    Have any of our other members experienced this?

  • #20755
     Shannon 
    Participant

    I thought this was common in people that use high oxygen? ( holes in the nose?) I did see a ENT doctor and he burnt the holes closed but they opened back up shortly after and caused non stop bleeding and clots. They can also take cartilage from my ears and fill in the holes. But I can’t be put to sleep anymore. So I just have to live with it. It actually doesn’t hurt. It aches sometimes. And feels really weird. It’s just starting to affect the tip of my nose causing it to collapse. I do have overlapping autoimmune diseases and yes Secladerma which does affect tissue, muscle and other health problems. Not sure if that’s why I have the holes or not? I have so many things going on with my body that the holes are the least of problems. Lol Like I always tell my kids “ I have bigger fish to fry”. So I just deal with it!

    • #20760
       Brittany Foster 
      Keymaster

      Shannon,
      It’s interesting to me because that’t the first time I’ve ever heard of someone mentioning this. I am sorry that it had to be YOU that brought it up as one of your symptoms you are managing on top of everything else. I know that in the grand scheme of things it must be such a “small thing”. Isn’t it funny the way disease shapes our minds to decide what is a “small problem” vs a larger problem. I always joke to my doctors and say “ehh it’s all relative”. Like the 7 out of 10 pain in my stomach isn’t AS bad as it could be so I guess I’m doing pretty okay. If someone else stepped in my shoes for a day they would immediately take them off! LOL

  • #20763
     Shannon 
    Participant

    Yes it’s true I do think I down play my illness sometimes. I think for me it’s because I always put a brave face on for my kids. I hate scaring them. And yes I wish people could live for just a little while in our shoes! Lol I have a few people that I would like to be me! Even a few doctors! Hahaha

    • #20771
       Brittany Foster 
      Keymaster

      Oh there are definitely some medical professionals that I wish I could go back to and be like, “oh does my oxygen level of 80 that you never checked look like a ‘mental illness’ to you? Ughhhh the ones I would just want to step in my body and feel what I’m feeling. Then maybe their bedside manners and care for patients would improve dramatically.

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