Life With PH

Hot Pink Oxygen

I AM EXHAUSTED. And there are no other words for my mood right now other than I hope yáll are having a better day than I am.

So, while in Houston I had to do my 6 minute walking test (which every PH patient does) and of course my oxygen saturation dropped to 80 which isnt so great, because the normal saturation level for people my age is 95 and up. My walking tests are always like that even though I feel absoloutely fine and not short of breathe at all! So its very frustrating trying to understand why my body says I’m not getting enough oxygen, yet I feel like I am. Following these bad results I always get a speech about how I need to start wearing my portable oxygen for heavy duty walking or even out to the mall and things like so. This is just so irratating, mainly because we all know what portable oxygen looks like. We see it jammed up the noses of the eldderly, the extremly sick or the hospitalized. The only time I’ve ever been in public with my oxygen was at walmart and of course people were staring. Its just a very difficult image to deal with and to present to people. So I guess I’m just gonna have to get back into the swing of it! I’m trying just mainly wear it at home so I wont have to deal with it when it comes to the public. Its amazing how much oxygen does help though! I put it on and its amazing to feel the difference, and how much more oxygen I’m getting. For people who have to wear their oxygen in public, I applaud you! I am glad you are able to do that, because for me Its still a mental battle. I feel fine, therefore I want to look fine and don’t want to portray this image of a “sick” person when I don’t even feel it. Its a very frustrating mental block for me to get past, but something I will to have to work on.

In the meantime, I’m all about changing the medical world look and making it a little more fun. For instance, I HATE surgery socks. We all know that the operating room is extremely cold and part of the surgical teams job is to keep the patient warm! Being on blood thinners, I am ALWAYS cold, so for my last heart cath they steamed my blankets. Oh yes, I was a happy little patient. But also with every patient, they slip these ridiculous looking surgery socks on you’re feet. I hated them, because yes, I am that crazy girl who wants to look good before, during and after my surgery! So to counteract those terrible things, I bought some leopard print Betsey Johnson fleece socks. They are amazing and so freaking comfy, and not to mention CUTE! So anything I can find to make PH look a little better, I take it and run with it. For all you people on Oxygen, I found COLORED CANNULAS! I know that these have been around probably a while, but I have never seen or even heard of them! I think these are great for spicing up your oxygen lifestyle and are great for kids too!! So far, they have been pretty cheap, so I might find myself breathing through a hot pink tube pretty soon!

Well I hope this somewhat helps what yáll are going through with being on O2 and maybe It’ll help me along the way! Its definitely hard to accept some facts and lifestyle changes with this disease, but that is all part of it. Have a lovely week!



6 thoughts on “Hot Pink Oxygen”

  1. WOW!! I am 44…(just a tad bit older than you) hehe!! This is so me…I cannot get “over” wearing the o2 in public. When I read your blog,,,it’s as though I could have wrote every word you said……:) Thanks for your blog…

  2. Haley, I seem to keep coming back to your blog. You write so well. =o) I worry about you feeling uncomfortable about wearing your oxygen in public. It’s so important that you use your oxygen even in public. It will help take the load off your heart from working so hard if you use oxygen and it will prolong your life. I had to start wearing my oxygen 24/7 because I just got so tired without it. It sucked not being able to do things that normally I would have been able to do before my health started to decline. My best “weapon” for those who stare (even though they are just curious) is my smile. Not just a little smile… a big smile that says “I’m awesome and thanks for noticing me!” lol! You’re so pretty… don’t let your hesitation to having to wear your oxygen outside the house, prevent you from living your life to the fullest. *hugs*


    1. Christine,
      I’m glad you’re enjoying it! Thank you so much. Yes, one day I might work up to being comfortable with it if I do ever need it, but with things going so great right now it isn’t necessary. I’m glad you are wearing yours though and are so confident! Thank you so much for reading and for the kind words. 🙂

  3. Haley,
    I may not know exactly how you feel, but I have am so sorry for you. I realize how having to where your oxygen tank in public can effect you, but you’ll find someone who appreciates you for who you are instead of who they want you to be.
    PS. My name is Haley Ann too! 🙂

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