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Untethered

July 22 Update

Friday, July 22, 2022

11:15 AM

Last evening, I was untethered from IV drip. Now I am only hooked up to the IV four times a day for the antibiotics. The rest of the day, I am FREE! This meant I could sleep without having one arm tied to the IV rack (the staff call it an IV pole, but rack sounds better to me). And I did have a better sleep.

 

If you’ve never been in the situation of having to be on an IV and drag around this thing that looks something like a coat rack on wheels every time you need to move, then you have no real idea how restrictive it is. It’s only five feet (metric users convert that distance on your own) to the bathroom, but I have to unplug the little beeping machine on the IV rack so I can maneuver or rather drag this pole with hooks into the bathroom with me all the while making sure the oxygen hose doesn’t get caught in the door. Once my business is complete, then I drag it back to where I’m sitting or lying and plug the annoying beeping device back in because if I don’t, the battery dies and it beeps even louder. Complicating all this is moving the large eating tray around so the IV rack can be close to a plug, but still giving me room for the tray where my water glass is. All this to say, it’s been liberating to not be constantly hooked up. I can walk around the bed just dragging the oxygen hose. I was even able to do some basic tai chi warm-up exercises this morning albeit very, very slowly. I hope the photo gives you an idea of what I have had to manipulate.

 

I am really missing exercise. This morning, my lower back was threatening to spasm. Now that can move around a little more, I’m hoping to prevent that. It’s only 10 steps around the bed, but it’s more steps than I have taken in a few days.

 

Another bit of progress occurred last night when I was able to lower the oxygen flow from 4L to 3L while I slept. Once I was up and moving around this morning, I had to put it back up to 4L because I was getting a little breathless and the dry cough returned. The dry cough is connected to pulmonary fibrosis. All of us with PF have it. It continues to astound me that with all the remarkable scientific minds working on PF and its related symptoms, no one has come up with a way to help relieve this annoying cough. Fisherman’s Friend helps.

 

And another bit of good news; I can trust farts again.

 

With me being in isolation, every time a nurse or doctor has to come in to my cell, they have to put on protective clothing including gloves,  gown, mask, and visor. It is the same as COVID protocols. Every single person coming in complains about how hot the gown is. To prevent COVID spread, the gowns have been designed so that there is no air flow. Knowing what they have to go through with this costuming rigmarole to be able to enter this isolation room, I make as few requests as possible even though they’ve been so generous as to say to ask for whatever I need. The one request they can’t grant is to let me out.

 

Dr. Kate Ellis has been checking on me every day since checking into Hotel QEH. She says the next thing they need to determine is whether or not I’ll need to go on home oxygen. I suspect the PF has progressed to the point where I’ll need to, but we shall see.

 

My fantasies of escaping here have all but gone away with the heat warning and humidity out there. I know I’m better off in here, but I would sure love to be home.

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