CHAPTER 8. New Year's Day 01.Jan.2023
Hold My Hand: A Journey Back to Life
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01 JAN 2023 @ 13.09
A new years update from me that things are moving forwards and she can now feed herself and talk to us. She has problems remembering the day before and the day after the 5 days she spent in the coma. I just want to start the year with a positive message that things are going the right direction. She will be operated on again on Tuesday and at least another twice over the next couple of weeks. Then she’ll be in rehabilitation for some months after that. Happy New Year to all of you and here’s hoping for a better 2023. Kim
My hands were still strange and felt alien, as if they’d been transplanted from someone else’s body and not reconnected properly. But at least now my brain could exert a little control over them. Even if it was a bit hit and miss.
I could open my phone and read messages that Kim sent me. Replying wasn’t so easy as typing was beyond hard. Even a few letters took me minutes instead of seconds to write as my fingers hit the wrong keys. I’d never been so enthusiastic about predictive text until then. Suddenly it was a life saver.
With a lot of concentration, I could finally pick up a plastic cup of water and wiggle the red stripey paper straw into my mouth. It felt like progress.
But with no warning the little normality I was hanging onto, and the feeling of these tiny steps towards progress, got yanked away. I drank some plain water and vomited a cup full all over the clean hospital issue top that a nurse had just put on me.
The vomiting was back – did it mean that I was getting sick again? At least I hadn’t eaten any breakfast yet – that would have made it a whole lot messier. It was just water.
I was (quietly) terrified. The last time I had a problem holding down water was when it started. Suddenly the simple act of being able to drink plain water was taken away. Even thinking about water made me want to vomit all over again.
Note. I’m not sure why I happened to vomit that particular morning. Perhaps it was a fever thing as my medical journal showed that my fever was bouncing around again.
My sense of taste had also gone awry. Things I normally liked tasted peculiar. In many cases distinctly unpleasant. Some tastes seemed so much stronger than I remembered. Tastes I’ve known and loved start me retching and at worst vomiting.
We tried to find alternatives before I started to panic about not drinking enough fluids. I asked one of the nurses if there was any chance of trying some sparkling water aka ‘Dansk vand’ which directly translates as Danish water! I had no idea whether it would have the same effect as plain water, but in my head it sounded better.
I hesitated to even ask. I was lying in a hospital bed without ever having left the room. I had no idea what was outside my door and whether a hospital would have something like that for patients. I had hope though as Kim had shown me pictures of the large glass fronted fridges in the kitchen that stored all kinds of food, snacks, protein shakes, protein yogurts, etc. for the patients.
‘Dansk vand’ turned out to be a life saver – somehow the slightly alkaline taste was tolerable. No more vomiting.
Even Coke Zero which I adored, and Kim was bringing in for me, tasted unpleasantly metallic. We’d bought ginger ale at home as Aunty Mary is a big fan of rum and ginger. I asked Kim to bring in some of that - without the rum obviously! It was wonderful and an immediate hit. Kim had to head to the grocery store to stock up.
It seems that changes to your sense of taste is a common problem that people experience after sepsis. I didn’t need to panic or worry. It was just normal. But nobody told me. Nobody warned me. Nobody bothered to ask.
It’s not clear exactly why these taste changes happen, but from what I’ve been able to find out it seems to be related somehow to the infection-induced inflammation in the body.
There are a whole bunch of common problems after you’ve had sepsis, but nobody sat us down to tell us all the things that I might experience in my recovery. Every time something happened, it was a new mystery to solve, and more anxiety that maybe I was getting sick again.
Doctors are wonderful when it comes to their commitment to saving our lives. However, sometimes things move at lightning speed and there’s no time to sit down and talk about what’s happening or what’s to come. They just need to get on with doing their best to save your life. And when they’ve done that you’re passed off to another team.
Your family aren’t always with you. While you’re sick doctors tell you things you don’t or simply can’t hope to remember. You often have a problem just keeping their name straight in your sick brain, let alone even remembering which medical specialty they come from, or what they’re trying to tell you.
Doctors also don’t tell you everything. They think someone else has told you or they assume you already know, or they don’t think you need to know, or they don’t even realize you need to know or they’re just too focused on their area to think of you as a whole person.
As I lay there more doctors came and went. Nurses rotated through their shifts. Their worlds kept turning. I couldn’t think. I couldn’t remember. I still couldn’t comprehend what had happened to me. I knew I’d had sepsis. I knew I’d had a big infection. But that was about it.
DEVIL JUICE AND DIAPERS
Antibiotics are well known for the effect they can have on your digestive system. I’d already nicknamed the bags they hung on my i.v. stand as ‘devil juice’ by this point.
When you have liters of the stuff flowing into your veins – day in and day out – you can just imagine the impact. Add to that I’d only been drinking protein shakes and eating protein yogurts which only served to compound the extreme liquidity of what was in my digestive system.
The adult diaper or nappy, whatever you’d prefer to call it, was no match for my guts. The diaper lost every time. So did the sheets on the bed. My thin duvet. The dressing on my abdominal wound. I’m surprised it didn’t paint the walls too.
Research and testing may have been extensive in the baby and toddler version. Think of all those adverts on TV with those little toddlers waddling about while the voiceover talks about their amazing design and that there’s never going to be any leaks. There’s definitely not been any similar road tests for the adult version.
And don’t tell me the market isn’t large enough in our aging population for someone to pull their finger out and make something better!
Add to that the complication that the diaper isn’t built to allow for the fact that you’ve got a catheter in there too or that you’ve got a great gash in your stomach for that matter.
The constant leaks created highly noxious disaster zones that required the bed sheets to be changed multiple times a day. For the nurses to clean me up. Only for it all to all be repeated 15 minutes later. The nurses hated it – especially with hangovers from celebrating New Year a little too enthusiastically!
There was at least one instance when a nurse turned an interesting shade of green and had to rush out of the room to either find reinforcements or do a bit of strategic delegation to someone more junior.
I loathed it, but there was nothing I could do. I tried to look for warning signs that an explosion was imminent. Tried to work out if a fart was going to be more than a fart! I failed miserably.
The only saving grace was that finally I could almost roll myself over in the bed – well maybe not quite but I could hang on to the bars on the side of the bed and make a little effort to raise the other side of my body enough for them to be able to do what they needed to do. It certainly beat having to call two assistants to roll me over every time as they had been doing.
That afternoon another doctor came to visit. He was a rarity. He didn’t sweep into the room, bark his name, poke and prod my body, and rush back out of the door. Instead, he talked to me like a real person.
He allowed time and space for my confusion to work itself out and my clogged brain to catch up with what he was telling me. He repeated things when I asked without showing any irritation.
Maybe because it was Sunday afternoon, he was less rushed than usual. He got to know me a little and treated me like a whole human being. It felt so good.
He talked about another operation in the next few days. He explained that my heart needed to be OK for them to be able to operate and mentioned the word ‘asystole’. I knew enough to work out that something bad had happened to me in the last operation. But what?
I was convinced for a while that he was from Cardiology because he talked about my heart so much – in fact I’d find out later that he was another orthopedic surgeon.
I pushed him about how long I could expect to be in hospital. Another couple of weeks he thought. But there were still too many unknowns to be sure. It depended on how my leg progressed.
I worked so hard to remember his name. But all that stuck was his first name and that word ‘asystole’. Somewhere in the back of my mind I knew that word was very important and when I could look it up it would tell me what had happened to my heart.
My toes still curl though when I think of that chat with him. It seems that I gave him a bit of a lecture on why people with doctorates, in my case a Doctor of Philosophy (aka a PhD), have the right to be referred to with the title ‘Doctor’ in the UK – yet not here in Denmark.
I worked hard to get that title and let go of the Miss, Ms, or Mrs. ‘Doctor’ was all mine. But I had to bid it goodbye when I moved country.
Whenever I saw him again he would always call me Dr Gatehouse, with this big grin on his face. It always made me laugh. So in my head I remember him as Dr Doctor.
DIGNITY
There’s no dignity as a patient. I know that’s probably challenging for some people to accept. I appreciate the doctors and nurses try to treat everyone in a dignified manner. But let’s be honest: you’re at everyone’s mercy. You have no choice but to put your trust in them.
You submit to being poked and prodded. While they try to work out what’s wrong and how to get you better. Whether it’s somebody forcing a tube up your nose and down your unwilling throat. Whether it’s a nurse leaving a pessary painkiller for you to just pop up your own butt hole. (My words, not hers.) Whether it’s the insertion of a catheter, so everybody that comes near your bed gets to look (or try not to look) at your bag of urine.
When you’re unconscious in the ICU all bets are off. Their singular mission is to keep you alive. But when your open wounds extend up your inner thigh, within millimeters of your crotch, and you have a big gash from your navel down to your pubic hair, it’s unavoidable that people are going to get an eyeful of adjacent territory.
When I was in the ICU Kim was shocked more than once that I was just lying there, thank goodness oblivious to the fact, that my private parts were on display to the world and anyone who happened to walk past.
Then as you recover, your wounds need to be checked and rechecked so after a couple of weeks in hospital you feel like the entire medical staff have seen what you have down there. I’m not a prude and living in Denmark has made me comfortable around naked bodies in various changing rooms – but still…
I’ve already covered the joy of adult diapers. But your path to graduation and leaving the diapers behind is to start using a bedpan. If you haven’t been unfortunate enough to experience one of these, it’s basically a big dish with a border (a little and I mean a little like a toilet seat) and a hole in the middle. From my own experience they’re generally metal and some can have a cardboard insert in the middle for easy cleaning.
So how patient-friendly are with these medieval delights of the modern age? The design certainly hasn’t changed or improved in decades. Lots of decades. There is nothing in their design that shows any consideration for the shape of the human body, let alone comfort.
You’re weak as hell, but you’re expected to sit up in bed and have one of these things manhandled by the nurse underneath your butt. You end up sat up in the air in the middle of your bed. Legs straight out in front of you. Barely able to sit up in my case. Oh, and if you’re lucky they do remember to close the door to your room on their way out.
And then you’re meant to be able to do whatever it is that you think you need to do. Even an entirely healthy person would find this an Olympic feat! Once done you have to ring that buzzer to get the nurse back in to deal with the aftermath.
If you’re lucky they’re back in seconds. If not, you’re sat there for a while until they have time to get back to you. And then you must go through the entire reverse repeat performance and enjoy the toxic waste dump aroma that now fills your room.
Surely someone must see the business potential of finding a better solution?
So, dignity? Tell me about it.
If this post made you feel something then I’d love it if you would click on the heart and add a comment about what resonated for you – it means a lot to me to hear from each of you.
If you would also be kind enough to share it that will help more people find Hold My Hand and learn more about these awful infections. Maybe one day that knowledge will save a life.
Thank you!
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 9. 02.Jan.2023 - the clock is ticking to my next operation and finally I get to stand on my own two feet again.
So nice you had Dr dr !!! You write so well Jacqui , I feel like I’m in the hospital with you !
If you can get through all that belittlement you can get through anything! Not being in control of anything from hands to bladder to bowels is a tough one. I would find all that very hard to deal with and plus not knowing the details of your illness doubly hard.
Perhaps the best person to come up with better equipment that might make it all easier to handle is someone who has been through it all! Perhaps in an advisory capacity with an inventive mind or two as well. Very brave of you to share all this Jacqui. I like the sound of Dr Doctor. Did you meet up with him again ?
Sue xx