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00.30am
My last concrete memory is of sitting on a hard plastic chair in a corridor in the ER, Kim beside me. Feeling sick. Stomach rolling. There was a bathroom at the end of the corridor that I managed to walk to at least a couple of times. My body was still on a mission to get rid of everything it contained, in any way possible. How could there have been anything left in my body by this stage?
There was nobody to be seen. No patients in the waiting room outside and nobody where we were we sat on the ‘inside’. Not a surprise when it was just after midnight on the biggest festive day of the year here in Denmark. Christmas Eve is a big deal. A very big deal. Good company with family and friends, copious quantities of food, and of course gift giving.
The only activity was the odd doctor or nurse popping in and out of the various rooms along the corridor.
As we sat there, I realized that I hadn’t pee’d in hours. Not since before we left to go and see our own family doctor before noon. More than 12 hours ago.
I’m always the first to ask where the bathroom is wherever I go. Liquid tends to flow through my body at what sometimes seems like a startling speed. So, this was an unknown phenomenon – one Kim would have appreciated a few times in the past instead of being forced to hunt down a bathroom only an hour after we’d left home to go somewhere! It was a standing joke in our house. That night I just thought it was odd. I didn’t consider it a sign that my body was starting to struggle. It was.
The wait was only a matter of minutes. We already had their attention.
The doctors knew almost immediately that I wasn’t suffering the effects of kidney stones as the ‘phone doctor’ had surmised. You didn’t need to be a rocket scientist to work that one out. But they recognized that something was very wrong with me.
That still surprised me at the time. There was a piece of me that had expected them to dismiss me for being overly dramatic and tell us to go home. They’d tell us it was just some kind of bug that would pass. They didn’t.
Now the investigations started in earnest started to find out what was going on…
They took blood to run various tests. (Over the next 12 days they would take blood to test a wide range of parameters some 91 times.) They were also checking my pulse and my blood pressure – my vital signs. Trying to find hints of what could be wrong and which medical specialty they needed to call.
Their next idea echoed a possible cause raised by my own doctor and according to my medical journal it stuck around for a few hours – they suspected diverticulitis. They called in the gastrointestinal (GI) team. I didn’t have a fever, but my blood pressure (BP) was already lower than my norm at 101/73. The average healthy BP is around 120/80 and I know I’m normally right around that point or perhaps a touch higher.
Apparently, Kim left around 2am – his memory not mine. He headed home to get a few hours sleep – not easy when he was anxious about me, had a puppy who still wasn’t house-trained and liked to get up at 6am, and had Christmas dinner to cook for six guests.
The poking and prodding of my body continued, complemented by plenty of head scratching by the medics.
Over the next couple of hours, according to my medical journal not my failing memory, they continued doing blood tests almost every hour and checking my vital signs.
I have no clear memories of the rest of that night. I slept a bit (I guess). Not a lot going by my journal as they were monitoring me so closely. The one thing I remember is the pain. If it was even possible it was getting worse. And worse. They gave me morphine and more morphine and more ... Four doses. It didn’t touch it.
06:00am
My BP continued to sink – dropping to 85/74 during the night and by early morning it was down to 77/59. I’d started to run a fever (38.3oC). The concern about my state was mounting.
At 06.21am they did the first CT scan of my abdomen. To show how my memory was affected I do have flash of lying in the scanner, but would have told you that it was right after I arrived at the hospital and not some six hours later.
The pain was still in my groin so they assumed that scanning my abdomen would cover any problem areas. The scan did not include my thighs – something that would prove important later.
The report showed free fluid in my abdomen; fluid in my abdominal wall that shouldn’t be there. They suspected some sort of infection or inflammation. Perhaps peritonitis – an inflammation of the lining of the inner wall of the abdomen. They knew something was going on, but they still couldn’t work out what.
There was more head scratching, but things were getting more serious by the hour.
Gynecology (Gynae) were called in.
09:48am
My BP was still low: 77/53. Blood pressure is classified as low once you get below 90/60. Of course there can be individual variations, but the level I was now at was a major concern. My brain wasn’t getting enough oxygen as there was simply too little pressure in my system to keep my circulation working, and blood flowing, properly.
I was complaining I was dizzy – a classic symptom of a low BP. I wasn’t getting out of bed as I still didn’t need to pee. But I’m sure if I’d tried, I would have landed on the floor. I have a feeling that the nurses told me not to get out of bed unless I called them first. But perhaps that’s a figment of my imagination.
The multiple blood tests were starting to show more definitively that something was going on. My CRP had started to sail upwards.
CRP (aka the C-Reactive Protein test) measures the amount of this protein in your blood. CRP is normally made by the liver at low levels, but when you have infection in your body then the liver releases more CRP into your bloodstream. The more serious the infection the more CRP is released. The CRP test should normally be less than 10. Mine was already up to 163.
Progress of a kind – they made a diagnosis (of a sort). Putting together the high CRP and the low BP they suggested that I had something called ‘sepsis’, previously known as blood poisoning.
Sepsis is serious. It’s classified as a medical emergency. It happens when your immune system has a dangerous reaction to an infection and you end up with extensive inflammation throughout your body that can lead to tissue damage, organ failure and death.
They had to act quickly. I was on the road to nowhere.
Still, they had no idea where the infection was in my body. Nor why I had such a major infection.
It was another sliding doors moment, that turned out to be critical in my survival, when they decided to start pumping antibiotics straight into my veins. But they were working blind. They had to keep everything crossed and hope that they’d picked the right ones that would fight whatever was causing this unknown infection.
SEEING RED
Following the CT scan that morning they were about to send me sailing off around the hospital in my bed to see the Gynae team. Hoping that with their expertise they would be able to pinpoint the source of the infection.
At the last minute the GI doctor came to see me again. They were now thinking this was less likely to be diverticulitis and she wanted to tell me that I wasn’t going to come under their care.
I have a flash in my memory of her face. She was so kind. And seemed a little sad, even apologetic, to be sending me on to another medical specialty. Then again, reflecting on that image in my mind, perhaps the look on her face was more concern considering how sick I was at that point.
But maybe this is all in my head – part of the delusions I was starting to experience and another figment of my imagination and the impact of the sepsis on my brain, helped by the lack of oxygen.
It’s only in the past couple of weeks, after reading a bunch of scientific papers on sepsis and NF, that I’ve realized just how dire my prognosis was at that point. My chances of surviving, let alone recovering in any form, were getting slimmer by the minute.
She asked to see again where my pain was located – she wanted to take a look at the skin. The pain by this point was creeping downwards into my thigh and moving from my groin where it had started.
As we both looked at my skin we saw it had started to go red. It hadn’t been like that before.
And it was just starting to swell. She was totally calm but drew two lines on my skin – the first around the central swollen area and the second around the area to which the redness extended. It covered an area that was around 6cm by 6cm according to my medical journal. I didn’t think much of it. Another sign of just how dysfunctional my brain was at this stage.
11:00am
I was wheeled off to Gynae in my bed – they didn’t even bother to try and pour me into a wheelchair. At this particular hospital they have these cool little machines that look a bit like a sit-on garden mower. The person ‘driving’ attaches the machine to the head of your bed and then pushes you (at some speed) around the hospital corridors. No physical human effort required.
I’d describe it as flying around the hospital – in and out of corridors and crossing bridges spanning large atriums – but I guess my sense of space and speed may have been a little distorted given my condition. It was probably a much more sedate pace than the ‘Fast and Furious’ speed that I have in my mind!
I have a separate memory later of a nurse joining our little convoy. I’m not sure if it was the same day or another. Kim wasn’t there so he can’t confirm. The nurse had a little scooter and on the front was all the ‘crash’ equipment they needed to resuscitate me if something happened while we were in transit between hospital departments. It’s a fuzzy memory, but I have the feeling it happened more than once, and it does seem to make some sense that it could have happened.
Once we made it to the Gynae department I had to move to an examination table. “I can do it” I remember saying. “No, you can’t” they said. I tried to disagree. But they were so right. As soon as I tried to put my feet to the floor my legs buckled. They had turned to jelly. I had no strength whatsoever. Nothing. I couldn’t stand. They carried me over to the table.
From my medical journal I can see that by this time they suspected a ‘strep A’ infection in one of my fallopian tubes (the tubes that run from the ovaries to the uterus). Strep A is a common type of bacteria and most of the infections it causes are mild and easily treated, but some are life-threatening. More about the bacteria later.
The examination and tests were inconclusive. They still couldn’t be certain of the source of the infection.
The doctors continued to draw around the red and swollen areas on my leg … each using a different color pen and now writing the time on my skin by each ring they drew. In my journal it shows that in just over an hour the red area alone had expanded from 6cm to 10cm.
My BP also wasn’t improving.
They added Orthopedics to the list of specialties called to take a look at me.
12:00noon
Finally, I was formally admitted to the hospital. I remember the Gynae doctor calling someone on the phone and hearing them talking from where I was lying in the corridor. I have no idea who he was speaking to, but I know he was adamant that I needed to be admitted right now. It seemed as if nobody knew who should ‘own’ me as they still didn’t know the source of the infection. Thankfully the Gynae team stepped up and took me in.
1:30pm
By now I was parked in my bed in a proper room. It had beautiful curving walls as it was in a new circular building that had only recently opened at the hospital. It was more like a hotel room. A single room, with my own bathroom – not that I could get out of bed to use it. All white and wood – the ‘Scandi Chic’ style that everyone seems to go on about outside Denmark. This was the real deal.
The circular building had an ‘interesting’ method of numbering the entrances and rooms which created some major challenges for Kim when he came in to see me. His sense of direction isn’t the best at any time. Put him in a shopping mall and he can go in circles for hours never getting to either end. There was no chance that his patience would remain intact by the time he managed to find me.
He came in with a bag of clothes for me as I (we) still thought maybe I could go home later that day. That gives you a good sense of how little we understood about how sick I was by that stage and how delusional I was in thinking I could go home when I couldn’t even stand up!
The revolving door of various doctors didn’t stop as they continued to attempt to find out what was happening within my body.
The concern about my BP being so low wasn’t going away and they started treatment to try and actively raise it. This time I was visited by a doctor from the ICU (yet another specialty) to add calcium to my i.v. line as they suspected the low BP was due to dehydration.
It made no difference.
2.30pm
Kim had come and gone… But I draw a blank in my memory when I try to remember anything of his short visit.
As I said December 24th is the ‘big’ Christmas celebration in Denmark and the day of the festive meal – be it duck, pork, goose, or a combination of those according to your family traditions. Kim was home and busy cooking – trying hard to take his mind off what was happening to me in the hospital and failing miserably.
My heart rate started to rocket – hitting 200 at one stage… The nurses were totally confused and had no idea where this new symptom was coming from. This time Cardiology were called.
So far, I’d been assessed by Urology, GI, Gynae, ICU, and now Cardiology in the space of just over 12 hours in the hospital.
My kidneys were faltering, and I still was passing almost no urine even though I’d had bags and bags of fluids via the i.v. lines.
What did we know? I had sepsis.
What didn’t we know: Why?
Where was this infection?
The unknowns still very much outweighed the knowns.
3.30pm
Cardiology arrived. My heart was having its own version of a hard time, joining my kidneys. I had ‘AF’ (aka atrial fibrillation).
AF is an irregular heart rhythm that results from abnormal electrical activity in the heart’s upper chambers called the atria. It’s the most common type of irregular rhythm and I was well versed as to what it was as my Mum has had AF for a number of years now. Symptoms include fatigue, heart palpitations, trouble breathing, and dizziness.
AF is also the most common abnormal heart rhythm associated with infections as they cause inflammation in the body. This, in turn, can cause changes in the heart – the bigger the infection the greater the effect on the heart. For now, I had just the lowest level.
5.00pm
Whatever they tried to do my BP kept on dropping. By now it was down to 68/42 – dangerously low. They were sure it was sepsis. Yet my fever had receded for now.
As different doctors and nurses came and went, they kept drawing on my leg. The lines marking a bigger and bigger area. It was growing faster. And faster. And faster.
The red area on my leg kept growing and was now 15cm across and expanding in different directions. My leg was starting to look like the contours of a mountain on a map with all the pen marks.
Still the medical team were trying to convince themselves it wasn’t NF. It’s even mentioned specifically in my medical journal that ‘NF is not suspected’ and that I seemed ‘fine’.
I now know that is common when these infections hit younger more robust bodies or I guess in my case healthy, fit, somewhat older ones. Our bodies hold it together for longer and we seem ‘fine’ until we drop off a cliff.
They sent me off to a second CT scan – this time not just of my abdomen but including my thighs and that redness and swelling.
5.30pm
Another medical specialty was added to the mix and Orthopedics were called in. I was still conscious. However, by this time, nothing was being stored in my memory. It’s totally blank other than odd short flashes – images or a few words. But I found this WhatsApp message that I sent to a good friend who had been following my progress all day …
24 DEC 2022 @ 17.36
so add orthopedics to my list and apparently anesthetist coming to see me in case I clunk out due to the low blood pressure
Kim sent me pictures of the family all gathered at our house. His parents, my stepdaughter and her boyfriend, Mum, and Aunty Mary. Plus Evie of course. Trying to act normal with the black cloud of my absence hanging over their heads.
I sent Kim a picture of my Christmas dinner – an egg sandwich in a plastic packet. The picture was blurry. Out as character as I take a lot of pride in taking good photos and we have some beautiful ones, that have been made into canvas prints, hanging on the walls of our home. I only know that I sent it to him as I can see it in the WhatsApp messages we exchanged. Messages I have no memory of writing.
I have no idea if I actually ate the sandwich.
7.00pm
I wasn’t getting better. Things were getting worse. My CRP was soaring: 249. The concern was escalating from the medical team around me. But I was oblivious.
The Gynae team had recognized that I was too sick for them to continue looking after me through the night as they had too few staff.
The decision was made to move me – I sent another update to my friend ...
24 DEC 2022 @ 20.16
The tour continues – being moved to ICU as they have more nurses to look after my wonky BP
My only concern about the move was related to Mum – I sent Kim a message begging him not to tell her where I was going because I was worried about scaring her. I had absolutely no concern for myself. I have no memory of any fear. I was still just a ‘bit’ sick in my mind.
The sepsis and its effects on my body were getting worse. The medical team started ‘septic shock reversal’ to try and stop the rest of my organs from following my kidneys and shutting down. My body simply couldn’t cope with what was being thrown at it.
Septic shock is a life-threatening condition and can result from an infection that has taken over your whole body. It leads to dangerously low blood pressure which then impacts all the organs in your body, and they start gradually to stop working. The end result - death from organ failure.
The result of the second CT scan was in. It confirmed some kind of inflammation and infection in two separate unconnected areas of my abdomen and my left thigh. Something that Dr Handsome later referred to as ‘pathological’ (i.e. something that was involving or caused by a disease). That word didn’t sound good.
Slowly the medical team were following the breadcrumbs to find the answers.
9:50pm
Yet another doctor. I was now so confused and disorientated that I had no idea if it was night or day at this point. But the time stamp comes from my medical journal.
I think she was an anesthetist. I remember her being exceptionally kind and caring towards me. I didn’t have any real understanding of what was going on.
It was time to put a central line into the jugular vein in my neck. I didn’t blink. (Yep, go back and read that again.) They’re about to cut a hole in the biggest, most critical vein in my neck to put in a direct quick access point to my bloodstream. We’re not talking about one of those little cannulas (needles) that they often put in the back of your hand when you have an operation. This was serious stuff. There was a scalpel in her hand.
I thought nothing of it. It was just what they needed to do. I didn’t ask why. It didn’t worry me. I think I just said, “Go ahead”.
I have flashes of the horrible claustrophobic feeling from the plastic tent they had to put over my head. A necessity to keep everything sterile as they made the cut and put the line into my neck - with a stitch to keep it in place. I would have been hyperventilating under normal circumstances – I can’t stand very confined spaces. But I was still aware enough that I knew I just had to get through it.
I’ve had multiple major operations in my life to fix a dislocated collar bone, repair my spine, etc., etc. and never had something like this. Still the penny didn’t drop. They were already preparing me for something big.
At some point – I’m not sure exactly when – they started giving me norepinephrine, also known as noradrenaline. They’d brought out the big guns as nothing had worked thus far to bring my dangerously low BP up, and they couldn’t wait any longer.
Noradrenaline is a hormone and also a neurotransmitter (i.e. it also acts on relevant nerves). It’s important when it comes to preparing your body for action – fight or flight response. But as a medication it can be used (very carefully) to increase your BP. They sent it into my body via the new line in my neck.
Now I was on constant heart monitoring. The ECG machine beeping away beside me.
Did I eat anything that evening? Your guess is as good as mine. I don’t think it’s likely that I did.
Did I sleep that night? I have no idea.
Was I scared? I can’t be sure, but I don’t think so.
Did I have a feeling of impending doom? Not as far as I know.
Did I have any idea of what was coming the following morning? Definitely not.
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!
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 3. Christmas Day 25.Dec.2022 – I was rapidly succumbing to sepsis and septic shock, but still nobody could find the root cause…
This is a difficult read Jacqui - we were so reliant on Kim for everything - news, food….. Found the phone calls so difficult as he was speaking in Danish and we had to wait until he came off the phone and get an English version.
I’m so tense reading this. I can’t believe all the different departments you were sent to.