CHAPTER 3. Christmas Day 25.Dec.2022

Hold My Hand: A Journey Back to Life

If you missed the previous chapters of Hold My Hand: A Journey Back to Life then you click on these links to quickly jump to the Prologue, Chapter 1, and Chapter 2 and catch up on any chapters that you haven’t read before continuing. Thanks for reading!

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07.00am

My memory may have been almost non-existent, yet even confused, I still managed to hang on to a few facts that the doctors were telling me for a few minutes. I messaged Kim…

25 DEC 2022 @ 07.11

so I have a skin infection in my leg but not the nasty one they think

Will show you later

25 DEC 2022 @ 07.22

Great. Just add to the list of unknown conditions

Kim

In my medical journal it says they thought the skin infection was phlebitis (an inflammation in the skin). I don’t think I even appreciated what the ‘nasty version’ was that they were referring to – I was just relieved they didn’t think it was that.

And yet they did.

Unbeknown to me the alarm bells were ringing. The critical treatment path for potential necrotizing fasciitis was triggered. Finally they thought it was potentially NF in my leg and peritonitis in my abdomen.

My CRP continued to climb.

The swelling and redness in my leg had accelerated – they weren’t even drawing around it anymore. It extended right around to the back of my thigh and now covered most of the skin. Surgeons from Orthopedics and Gynae were required. Dr Handsome and the specialist team were being called in from their Christmas break. Now the question was how fast they could operate to find out for certain what was wrong.

The i.v. antibiotics were changed to the ones recommended for NF. Efforts continued to try and reverse the septic shock.

Weeks later I found a Facebook message that I’d sent early that morning to a good friend. I sent her a long message to explain that I was in hospital and had been diagnosed with sepsis. She replied…

25 DEC 2022 @ 07.24

Oh dear J. So so sorry to hear that. That’s awful for you… …sending the biggest hug!

Take care. I am a bit shaken to read this.

Her shocked reaction should have told me this was serious. But it didn’t. I responded…

25 DEC 2022 @ 07.54

don’t worry my friend – I’ll be fine

Later she’d panic when I went silent and didn’t reply to her messages anymore. She’d reach out to Kim for reassurance that I was OK, but he couldn’t give it.

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09.30am

Kim arrived. I have a vague memory of him being there – standing over to the right side of my bed – but couldn’t tell you what day it was or what time. It’s just a static image in my mind.

Apparently by this point I was greeting every new doctor like a long-lost friend. I was being a loud, ebullient person instead of acting like someone who was critically ill. Throwing my arms wide in welcome every time a new doctor walked into the room.

You’d think that when you’re just hours from potentially dying you just lie there. Weak, quiet, and unmoving. But no, I was the absolute opposite.

I thought I was the funniest person in the room. If you didn’t know better you’d have thought there was gin in my i.v. bag and not medicine! The medical team didn’t know what to make of me. Kim was bewildered – I was acting utterly out of character. He knew things were bad.

The surgeons were talking about opening up my leg and also going into my abdomen. At first they said the abdomen would be keyhole – the type of surgery where they make a few small holes and poke a camera and instruments in through them. Ultimately, they wanted a ‘full’ look so they were going old school and opening me up with a big vertical incision. “Do whatever you need” I said. Apparently. Not even thinking about what they were about to cut open.

A flash in my memory – this time a little movie. An apologetic nurse coming into the room - she wanted to put in a nasogastric tube. That’s the kind of tube that that goes up your nose and then down your throat into your stomach. It can be used to remove anything in your stomach and also to feed you if you’re unconscious for an extended period.

I may have been confused. My memory may be a mess. But damn I’ll never forget the sensation of her pushing that tube up my nose and down my throat – asking me to swallow at the right time. Retching. It took her multiple attempts to get it in and then tape the tube where it came out of the right side of my nose.

Oh my god, I can never forget that sensation of the tube sliding in and the nasty plasticky smell. Horrific isn’t a strong enough word to describe any of it. I guarantee that I’ll politely, but forcefully, decline any future opportunity to repeat that experience.

Then yet another doctor. This time wanting to put an ‘internal’ blood pressure monitor into a vein in my right wrist. As they cut into the skin it hurt. It was nothing like just inserting a needle. It hurt so much. There was no anesthetic and nothing to take away the pain. And to cap it all they did it badly and it didn’t work properly. They tried bandaging my hand and wrist so I couldn’t move them. But still the monitor kept failing. “We’ll replace it in the operating theatre”, they decided.

Let me just put this all into perspective.

I’m medically savvy – I know enough to be dangerous. I have a degree in physiology so I know how the body works. Like many people I’ve had a fair number of major operations in my life. And I’d never been through any of these things before any other operation. Yet in my weird state I still didn’t think any of this was odd or different. I didn’t see this operation as special. They were just looking after me – right?

In my mind I was so trusting. Not asking questions. The doctors didn’t think it would be the ‘nasty version’. But they needed to open me up to be sure. Of course it wouldn’t be the ‘nasty version’. How could it be? I was fit and healthy. What even was the ‘nasty version’? I couldn’t think. I didn’t understand.

Another flash in my memory – a nurse advising Kim and I to give each other the right to access each other’s online medical records. I remember the rush to do that on our smart phones before they took me for surgery. My brain didn’t work. My fingers didn’t work. I literally couldn’t see straight to press the right buttons on the screen.

Somehow, I managed to complete the correct online approvals with Kim’s help and he was in. He could see my medical journal, imaging results, blood results, etc.

I don’t remember Kim leaving. But once they wheeled me off to surgery he was told to go home – there was no reason to hang around and wait.

This is the day they told Kim I was critically ill and might die – according to an entry in my medical journal. He doesn’t remember them telling him.

As they wheeled me away I didn’t know that they wouldn’t be waking me up after the operation. Nor did Kim. Nobody had told us that was even a possibility – as far as we remember…

In fact all of this – the line in my neck, the tube up my nose, the BP monitor in my wrist – was preparation for them to be able to put me in a coma and admit me to intensive care. So that they could then battle to reverse the effects of the infection and the creeping septic shock.

I had no idea that I wouldn’t even wake up in the same hospital. I had no idea my life was about to be turned on its head. I had no idea there was a major chance that I was going to die and never wake up.

I hope I told Kim I loved him.

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12.00noon OPERATION #1: SAVE ME

I have a final flash of me lying on the operating table. People rushing around me. Under my hospital issue gown, I still had the sports bra on that I’d been wearing when I came into the hospital. They seemed to be debating about how best to remove it. “Just cut it off,” I suggested. They seemed to hesitate. “Just do it,” I said. And no, it wasn’t from that brand!

That’s the last thing I remember.

Days later, when I was discharged from hospital, I’d find that cut up bra neatly packed in a small clear plastic bag amongst my things. As if they didn’t want to throw it away just in case I wanted to repair it or keep it as some sort of morbid souvenir!

NF is often only diagnosed definitively by surgery. That’s the ‘nasty’ version they had hoped it wouldn’t be. They’d hoped it would be cellulitis – an infection in the skin – that is earlier to treat and a less dangerous when it comes to the risk of dying.

But I wasn’t that lucky.

I’ve read about the foul-smelling “dishwater” pus and grey dead tissue that they must have found when they opened up my leg. Literally rotting flesh. The bacteria eating me away from the inside out.

I imagine that smell wafting up their noses ...

Finally though they knew the source of my illness.

That first operation was critical. They had to remove all the dead infected tissue – a technique called debriding. They had to keep cutting until I bled red blood. Dead tissue doesn’t bleed. They had to try and get every last bit. Anything left behind would let those remaining bacteria keep chomping through my body.

Then they’d have to do that debridement again, and again, and again, over the coming days to make sure they got it all.

The problem in my leg was obvious – they opened up the entire inside of my left thigh. An area that was 25cm by 15cm (about 10 inches by 6 inches). My abdomen, even with a 15cm incision, still proved more of a mystery when they fished around, finding nothing obvious. The incisions were small compared to what some other NF patients have gone through. But plenty big enough as far as I’m concerned.

Now that they knew what was wrong with me the next set of alarm bells were rung to alert the next medical team that would take over my care. As I lay unconscious (intubated with a tube and a machine helping me breathe), with my surgery wounds still open, I was rapidly transferred by ambulance from our local hospital to the large trauma hospital in the center of Copenhagen for specialist NF treatment that I couldn’t get anywhere else in Denmark.

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BLUE LIGHTS

I’ve always wanted to be in a police car or an ambulance with the blue lights on. I have no idea why. When I was in my late teens, and in the run up to leaving school, I seriously considered a career in the police force. My head had been turned as a little kid by a police officer who came and spoke at my school about Jack the Ripper.

In the end I was dissuaded by a policeman at a career fair who looked me up and down and politely told me to go to university first and then decide if joining the police was really for me. I was more than a bit of a weed physically. A late developer in terms of both height and strength. I guess this guy thought I just didn’t look like what he thought a police officer should look like back in the mid-1980s.

But my blue lights fascination didn’t go away. In 1991 I had a cycling accident just a few weeks after starting university. I was a mature student trying to save money by cycling to and from the college campus. One day, in thick East London traffic, a car turned right across in front of me. And yes, I mean right in front of me. I was no more than a couple of meters from his front wing as he turned. The impact was unavoidable.

I went sailing over the front of the car. I must have tried to save myself by stretching out my right arm. I found out later that my hand hit the ground so hard that the impact dislocated my collar bone up by my shoulder. A classic rugby injury apparently.

I sat on the curb trying to work out what had happened and attempting to see straight. I didn’t know that I’d given myself a concussion as I’d whacked my head on the road. My vision was like a child’s kaleidoscope. A kaleidoscope looks like a telescope – a tube that you hold up to your eye and in a kiddie version you can twist the tube and see amazing patterns that change as you twist. My vision was shattered into all those tiny squares offset from each other.

I remember sitting in the road and hearing the siren of the ambulance coming to get me. Kind passersby had stopped to help me and called 999.

The paramedic managed to get the details of the driver who was driving his girlfriend’s car while disqualified, i.e. he didn’t have a valid driving license, and had no insurance.

But I was so disappointed once they got me into that ambulance, there was no blue lights going back to the hospital. I did ask. I wasn’t an emergency so there was no rush to get there.

These days whenever I see an ambulance with blue lights I think of that transfer from our local hospital into the city. They were doing their best to save my life. I was literally lifted from one operating table to be laid on another elsewhere. A true emergency. Time critical. Unconscious. Life hanging in the balance.

And I damn well missed the chance to finally enjoy those blue lights!

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3.10pm

They moved fast. Very, very fast. At 2pm I was still on the operating table at our local hospital. By 3.10pm I was already being assessed in the trauma center at the hospital in central Copenhagen. It’s a 10km (around 6 miles) drive from one hospital to the other and an easy 25 mins even with no traffic.

Kim had no idea where I was – only later did they tell him that I’d been moved to the other hospital in Copenhagen ‘for treatment’, but they said that once I’d been treated there then I’d be moved back to our local hospital.

The medical team were still gathering more information – the microbiology results had now confirmed that I had a ‘Strep A’ bacterial infection in both my abdomen and in my leg.

By 6pm I was back on the operating table again (OPERATION #2) with four surgeons around me. Checking to see if the bacteria were still at work. Checking I was bleeding red in the right places. They added a special negative pressure drain over the wound on my leg.

And then off I went to my first session in the hyperbaric chamber for 90 minutes.

You may have heard of hyperbaric chambers. They’re the metal chambers that are used to treat divers who have decompression sickness – a result of coming up from deep water too fast and bubbles of gas being generated in their bloodstream – a phenomenon known as ‘the bends’. The chamber can be pressurized to mimic the pressure exerted on a diver in deep water and can then gradually be reduced to bring them ‘up’ safely.

This particular chamber is special – it’s the only chamber of its kind in Denmark that is adapted to be used for unconscious ICU patients on a ventilator like me. I was in there for 90 minutes each time at a pressure equivalent to being 18 meters (around 60 feet) below the surface of the water.

The treatment in the chamber involves breathing pure oxygen in a pressurized environment – usually two to three times the normal atmospheric pressure that surrounds us every day. Initially it was thought that the treatment effect in NF was primarily via its impact of the additional oxygen on the bacteria themselves, but it’s now known that the picture is far more complex. It also helps the antibiotics work more effectively and has a positive effect on how your immune system responds to the infection. (Read more later in the NECK-re-tie-sing FASH-e-i-tis chapter.)

I’d be in that chamber again the day after and the day after that.

But I was unconscious. Unaware of what was going on around me. I didn’t even have any idea that my body was fighting for my life…xxx

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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 my writing. Thank you!

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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.

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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 4. The Missing Days – unconscious in a drug-induced coma my body continued to fight to survive while my brain had no idea what was happening…