Can’t breathe

It’s weird not being able to breathe. I mean, I CAN breathe, but if I have to move around move at all, then I can’t breathe. Like, going to the bathroom to go pee, which is a few feet from my bed, leaves me completely out of breath. It basically sucks. We’re working on getting what appears to be a shitty company called Quest to get me some oxygen at home but because they’re taking for-fucking-ever to get around to it, I’m borrowing a tank from #bestdocever’s office. Having an oxygen tank helps a TON.

On Monday, I had my HLA platelets. Over the weekend, they’d dropped to 20K. After the infusion, they’d gone up to the 40s. Whopdiedoo. Oh, and it turned out that my hematocrit was 19, which is also fucking low. So, I had a transfusion, 2 bags of blood. I haven’t seen the results after the transfusion, so I’m not sure how much the transfusion helped. Last time, it raised my hematocrit from 20 into the 30’s, so let’s hope we see a similar result.

This whole thing sucks. It just does. It sucks that I can’t breathe. It sucks that not being able to breathe keeps me in bed, It sucks that the progress that I’d made cognitively is now sliding backwards because I’m so tired, my brain isn’t functioning right. It sucks that I slept all day at the hospital during my transfusion. It sucks seeing the terror in J’s eyes every time I gasp for air. It just fucking sucks.

Today we’re hoping to have an answer about what to do about my goddamn lung—maybe a stent in there to open up my lung a bit, so I can breathe more? Maybe something else?

This disease fucking sucks. 

UPDATE: As of 12:30PM today, I have an oxygen compressor, as well as some portable bottles to take to doctor appointments. Yay!!! Holy cow, does oxygen make me feel better. More human, my brain actually functioning, not coughing so much…it’s seriously the bomb. O2, I love you.

9 thoughts on “Can’t breathe

  1. After reading this post, I went and donated blood on Sunday so that someone else can feel a little bit better. Each unit of blood raises your Hct about 4 points and once you are below 20 you feel like crap.

    It only takes about 10 – 20 minutes in the chair and 30 minutes total (paperwork and cookies) and when you are trying to think, what can I do to help, consider giving the living gift of life to help other people in similiar situations to Beths.

  2. It does. It totally sucks.
    My girlfriend in CA with stage 4 colon cancer had a drain tube put in her left lung as it keeps filling up with fluid. She too is unable to breath when moving. The tube helped. Oxygen showed up at her home helping a ton more. Then the right lung filled up. Got that side fixed too and now she can move around with her oxygen tank.

    Praying that company gets their act together and brings you your oxygen today.

    1. I’m thinking about your friend right now—tell her I’m so glad the drain tubes are helping and she can move around right now!

  3. Beth, thank you for still sharing your experience and yourself with all of us. Even when it is this difficult to expend energy. Thank you for letting us take on some of this frustration and pain with you. We all love you so much. You are my hero.

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