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journal writings and incomplete thoughts

I was sitting in the hospital trying to think of how to write about the experience that changed my life three years ago. However, I think I have decided I should write about how my life has changed recently.

Currently, I sit in my ICU bed, looking out at all the doctors who are talking about me during their rounding this morning. I’m not sure I can see all of them, but there are at least 10-12 medical professionals. At least they offered to do it with the door open so I could listen in, a luxury they allow me at times. Often they do the discussion about you behind closed doors. I enjoy knowing what’s going on with me medically, so then I can try to come up with creative ways to help myself. I’m pretty much willing to do whatever it takes to feel better. And when I say whatever, I mean whatever embarrassing thing I have to do right now, I will do.

Thursday afternoon I was napping. I was so physically and mentally exhausted because I had been unable to get into a very deep sleep for several days. I felt like a walking zombie, well… a walking zombie who couldn’t walk very far due to shortness of breath. The day before I had asked for a commode next to my bed because my bathroom, that was only 10-12 feet away, was too far for me to go. Not to mention the constant coughing was making me pee myself every so often - even if I had just gone to the bathroom. My cough is so intense and comes without warning. Kegels are my new best friend I guess.

I should probably move on from my leaky bladder issues, but everyone knows I can’t help but to make everyone feel really awkward when I’m embarrassed. I just think it helps to get over it if you tell the world. Kind of like that shart-video I made a few years back. Yes, I’m sick. Yes, I’m gross. Yes, I’m human. I wouldn’t wish this deterioration on anyone. First you lose your pride, then you lose your dignity, then you lose your self-worth, and then you start to lose your sense of self all together.

I digress. Coughing woke me up from my nap, which is pretty common recently. I sat up to spit out what I coughed up and it was blood. Not such an unusual thing for me, it had been happening for days. The doctors and nurses tend to get a little riled up when you tell them - so I didn’t. Not right away anyways. I was tired, it was a tiny bit of blood. I couldn’t feel my lung bleeding anymore, so I laid back down. Then I coughed up some more blood. At that point I knew I had two options, get rid of the evidence or call my nurse. The me from five or ten years ago would have hid the evidence and done so with a smile. I’m not that person anymore, so I called my nurse.

My nurse and my nurse practitioner came in. They asked all the usual questions, looked at the blood, took my blood pressure and temp. My NP informed me that the lung CT from that morning showed a small pneumothorax and tons of mucus plugging. Basically what that means is my lungs are retaining co2 and part of my lung was collapsed. The mucus plugging is basically the little air pockets in your lungs that are supposed to move air through them, are filled with thick, dry, mucus that doesn’t want to come out. If you’ve ever had pneumonia - bad pneumonia - that’s what my lungs feel like most of the time. However, these last two weeks… they’ve been even worse.

None of the things my NP told me were particularly surprising or scary to me, I’ve heard similar things before. I’ve gotten better, even when I have been much worse off. I asked her how we could re-inflate the lung and she said chest physical therapy, nebs, and moving around a bit. They had held off on a lot of my meds while I was coughing up blood as not to irritate the lung further. They had also stopped CPT. Chest PT is where someone claps on your back and sides to help move secretions in your lungs that are too stuck to move on their own. The only problem with that is, it can cause more bleeding. I need all of these therapies to keep my lungs free of mucus and working to my maximum capacity (which is basically shit anyway). So we were stealing from Piper to pay Paul, or whatever that saying is. We held off on therapies to let my lung heal and while my lung was supposed to be healing it just got more and more filled with mucus…then decided to collapse.

After everyone left that was checking on me for the blood episode, I was sitting up in my bed. I really had to pee so I decided I would get up to go to the commode right beside my bed. Now, I used to think peeing beside my bed was highly embarrassing, but I’ve since been calling it my chamber pot and pretending I’m a Lady from Game of Thrones or something. It's the little things that amuse me. While sitting elevating myself, my oxygen dropped from 96 to 86 real quick. I hurriedly got off the pot before another gaggle of (I won’t say geese, but I want to) nurses ran in to check on me. It’s important to understand a hospital a little bit here to understand what happens next.

I had moved from the pot to the chair next to it. Feeling completely out of breath, I was sucking air like a wind turbine, but getting absolutely no relief from it at all. My nurse popped her head in, “everything ok in here?” Usually when you have a big drop in o2 there’s an error with your sat prob. It’s not picking up and usually if you wait a second or two, it will regulate. She stood there looking at my monitor, I sat there watching it, huffing breaths for all I was worth. “I’m really out of breath,” I managed to get out. “Jesus, she’s really 80!” she yelled heading to the hall to get gowned up and to tell the other nurses around.

I was sitting beside my bed in a chair. They had told me to move around. I wanted to move around. I want to cough this junk up out of my lungs as much as anyone else wants me to. The fact remains, it just did not want to come up. Seemingly, the nurses came in like a wave. I just concentrated on taking breaths as much as I could. They hustled around me plugging in tubes, turning on more oxygen, setting up nebs for me.

All I could hear was the muffled murmur of chaos. I tried to close my eyes and focus on breathing, but my body didn’t want to allow enough air in. My whole right lung felt like it didn’t work at all. My nurse practitioners and doctors were around me within moments. “I feel really tingly and dizzy,” I mentioned through all the hubbub. “Yeah, lets get you back in bed.” In true Whitney fashion, I tried to do it myself and I almost fell. My arms were grabbed and I was lowered gently into my bed as an inhaled nebulizer was passed to me. I did three consecutive albuterol nebulizer treatments, but the tightness I felt wasn’t eased at all.

It’s hard to explain what happens in the moments of chaos when people are trying to figure out what to do with you, trying to figure out what’s wrong. Normally I always say I’m doing fine, I feel ok. But this time, I knew something was wrong. A man came in to do an x-ray and I had to take off my shirt and try to sit up. At that moment, those were the most difficult things I had done in my life. I took my top off, surrounded by people, trying to cover myself as best I could with my sheet. Remember all those things I mentioned earlier that you lose while your body shuts down on you? Ya, well… modesty is one of them, but more about that later. I remember wondering why getting an x-ray machine into place beneath someone laying down was so difficult, I tried my best to twist and move but every movement took my breath away. Rolling from one side to the other, moving my arm, scooting down or up, everything had me gasping for breath.

#death #cysticfibrosis #lungtransplant #respiratoryfailure #invisibleillness

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