CHAPTER 9. 02.Jan.2023
Hold My Hand: A Journey Back to Life
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The central heart monitoring team were still watching and tracking every heartbeat. At 05.33am (precisely) they noted that my heart spontaneously switched back to sinus rhythm – the normal rhythm that you expect from a healthy heart. For now, the messed up electrical messages that had created the jelly like wobbling of my heart muscle (AF) had gone away.
My hands were slowly coming back to life. The skin on my fingers had all dried and peeled away. My fingers were starting to work again. I could finally pick up my phone and make a call myself. It felt wonderful to be able to communicate with people outside my hospital room myself. What would take you one tap on your phone continued to take me at least three or four twitchy pokes to achieve. Fine motor skills were still very much a dream, but I was moving forwards.
It was ten days now since I’d been out of bed other than being manhandled on and off various operating tables or into scanners. Ten days since I’d been able to stand my own two feet. Ten days since I’d worn anything but hospital-issue white baggy tops with snazzy red stitching – just to remind you that they weren’t yours in case you loved them so much you wanted to take them home. Ten days since I’d been able to go to the bathroom. Ten days since I’d last been ‘me’.
The clock was ticking and there was just one day to go until my next operation.
A new nurse that I hadn’t met before, and would never see again, came into my room that morning. He was lively, positive, smiley, and engaging. He asked how long I’d been in bed – nobody else had asked that question. Then he looked me up and down and asked if I wanted to try getting up? “Wasn’t it about time?” he asked. “Errrrr, well maybe?” My head was spinning with anxiety and excitement.
It was a spur-of-the-moment thing. There was no plan for my rehab (and there never actually would be). He just decided to get on with it as the physiotherapist happened to be around on my ward that morning. He disappeared off to find her.
I didn’t know what to think. It sounded like a good idea. Scary, but good I thought.
Together they started to navigate the complicated process of getting me up. It wasn’t as simple as helping me to sit up, swing around my legs, and help me up to standing. First, the electric bed had to adjusted to the right position and right level. Then there was the heart monitoring – I was attached to what seemed like a million wires which had to be detached from the sticky pads placed around my torso.
And then there was my leg. The big wound on my leg was covered by what looked like a huge black sponge that was in turn then encased in a clear plastic that sealed the whole thing around my leg. From the middle of the sponge ran a tube that snaked off down the bed to a chunky box that was hung from the bars at the foot of my bed.
That box of tricks was probably about 30cm square and weighed a ton – I’d be guessing at easily five plus kilos so over ten pounds. It contained a pump and also a container into which fluid from the wound in my leg – underneath the sponge – was being sucked. It chuntered away to itself as it worked and couldn’t be stopped in its work or removed without surgery.
Authors Note. The box, tube, and sponge made up a system that is called negative pressure wound therapy (NPWT) or vacuum-assisted (VAC) therapy. It works by creating suction via the negative pressure (lower than the pressure around us) that then drains the fluid and bacteria out of a wound to help it heal faster and better. It protects the wound creating a clean, moist environment which encourages new healthy tissue to form and helps reduce any swelling.
This treatment is usually used for complex wounds that may be difficult to heal, like burns, skin grafts, various skin ulcers, or large-scale wounds like mine. It can be used on soft tissue wounds on many areas of your body. I would end up, weeks later, with a tiny version of this type of machine on my stomach when I had a problem with a small part of that wound not healing.
Oh, and of course don’t forget the catheter from my bladder, the bag of pee, and of course my bottom half was still encased in that ever so fetching adult diaper. It was a clean one thank goodness!
At least by this point I only had tubes connected to the lines in my neck for a shorter period every six hours when it they needed to pump in more antibiotics. So that was one thing that didn’t need to be detached.
After what seemed to be hours of preparations, they managed to get me sitting on the side of the bed. My feet touching the floor. Damn that was a good feeling. I was light-headed just from sitting up properly for the first time in so long. I sat there trying to orientate myself and letting the dizziness slowly subside.
They wheeled a big walking frame in-front of me. Not the waist-high version you see so frequently. This was the big brother. Made to come up to chest height and built so that you could rest your forearms on the sides. These frames weren’t new to me – I’d had the exact same ‘walker’ when they got me out of bed just minutes after my back operation.
From the walker they hung the heavy vacuum box and my very attractive (not) bag of pee.
It was time to try and stand. “Try to take your weight on your good right leg,” said the physio. She looked at me carefully as she tried to work out if I was up to this or not.
I tried to stand. I wobbled my way gradually up to a standing position. I leant on the walker. My legs felt like they were full of fluff. There didn’t seem to be an ounce of muscle left in them. I put my weight on my good right leg and tentatively touched my toes to the floor to try putting a little weight on my ravaged left leg.
So far so good.
I managed a laboriously slow shuffle around the end of my bed and over to my private bathroom. It wasn’t even five meters. I was dizzy again with the exertion. It felt like I’d run a marathon. And then I had to slowly swivel the wheels of the walker and hobble back.
I sat back down on the side of the bed. Elated and totally panicked all at once. So happy to be upright again and to do something under my own steam. While utterly freaked out at how much strength I’d lost in what seemed to be such a short space of time.
The rest of the day I drove the nurses mad. I knew if I wanted to get out of that place then I had to get up and walk. I had to start to build up my strength and stamina. But I couldn’t get up alone – all those wires had to be disconnected each time and the central heart monitoring team had to be informed of what we were up to so they didn’t think I’d snuffed it. The heavy box of the drain and the pee bag had to be hung on the walker. Only then could I try to stand and take a little walk.
I think I forced them to let me get up and shuffle to the bathroom and back a total of four times that day before the nurses cut me off insisting that I rest and stay in bed.
I was hoping to make it to the bathroom that night to brush my teeth at the sink with real running water. A luxury you’d never know you missed until it’s gone, and you must slurp water from a bottle and spit in a weird cardboard tray shoved under your chin in bed. But no, I had to brush my teeth in bed once more.
The following day was the next operation. I’d been told that if I was really lucky they might start to try and close the wound on my leg. But nothing was guaranteed…
02 JAN 2023 @ 18.37
Jacqui has been up and out of bed a couple of times today and is progressing. She’ll be operated on again tomorrow and we hope she’ll be moved back to our local hospital on Wednesday. There will be more operations to be able to close the wounds where they’ve taken away skin and tissue. We’re still positive but extremely tired.… I think Jacqui will not be working anymore, and I will take all the time off I want to spend with her… Kim
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If you missed any previous chapters from the book then you can find them easily on my website – click HERE and it will take you directly to the webpage dedicated to the book where you can read any previous chapters that you might have missed.
Every THURSDAY I’ll continue to share my ‘book in parts’ - Hold My Hand: A Journey Back to Life - chapter by chapter. I’m so excited to finally share it with all of you.
Next week I’ll be posting Chapter 10. 03.Jan.2023 - on to the next operation and Dr Doctor has a cunning plan!
Every stage such a marathon. Thank goodness for those people who helped you take those first (literal) steps to recovery.
So good to read of the progress - walking again at last. It must have felt amazing and positive