Another infection and a trip to the ICU again :(
With practically zero neutrophils, I was reminded again of the dangers of infection.
With practically zero neutrophils, I was reminded again of the dangers of infection.
It was Wed 27 July and I’d finished my last week of the intensive phase of my treatment. It was day 12 since my last dose of chemo, so my counts would’ve reached their lowest point but would soon start to recover. My family and friends had kindly given me cards and gifts to mark what had been an eventful and challenging journey through the intensive chemotherapy phase.
My HB count was low on the Monday, so I was going to have 2 units of blood today. It was a sunny day and Nathan was on his holidays from work (shipyard / factory fortnight) so he was accompanying me to the day ward, giving my mam a break from the hospital as she’d been my regular company this year.
I had a sore toe and what looked like an ingrown toenail from the effect of the chemotherapy on my nails. It wasn’t causing me any concern because it wasn’t open and it was dry, but to be on the safe side, I wanted the doctor to check it out. My temperature was 36.6℃ in the morning and I felt fine and was already starting to think about putting this phase to bed and start the next stage of my treatment.
It was the usual stuff at the hospital, the nurse accessed my Hickman line and took blood to get my counts. My Specialist nurse then came to review them with me. I had 0.2 neutrophils so I was neutropenic. I had an appointment on Friday where we expected to see those counts rising because it was day 12 and my platelets had already started to increase. We talked about mine and Nathan’s plan for an overnight stay in York on Sunday, as it’s only just over an hour away, we’d booked the hotel (with a 48 hour cancellation option - something I do all of the time nowadays!) and we said we’d make a decision on Friday about whether it was a good idea to go. The doctor came to see my toe and prescribed me some Penicillin but could see there was no signs of infection it was just a bit red.
The nurse came over to get the first unit of blood going, they did the usual check and confirmed my name, dob and blood type and got it going through Brian (the drip stand).
It was about 20-30 minutes into the transfusion when I started to get a headache at the back of my head. One of the things you must do is highlight any reactions or changes you notice when you have any kind of treatment, whether it’s chemotherapy or blood products, even if you’ve had them several times before, so I told my nurse about the headache. She stopped the blood transfusion straight away and did some observations, blood pressure, heart rate and temperature.
I don’t remember what my heart rate and blood pressure were at that time but my temperature was 37.7℃ so it was starting to rise. The procedure is to wait 15 minutes and take my observations again before deciding whether to proceed. I felt rotten and I started to get shivers and couldn’t stop them. One of the nurses who knows me well spotted me and suggested I take my wig off. We’d talked about this before and my temp is usually 0.5℃ lower without the wig, so off it came.
The wig didn’t help though, my temp was now over 38℃ and my shivers were so visible that it looked like I was having some sort of seizure! A lady sitting opposite, with her husband who was receiving treatment, kept giving me a sympathetic smile. One of the porters that I usually have a running joke with that I owe him rent for the time I spend at the hospital saw me shivering and brought over a blanket. I thanked him but explained that I wasn’t allowed one because I had a high temperature.
I was still attached to Brian with the blood - although he was switched off and my line clamped. I needed the loo, so I wheeled over to the nearest one. When I left the cubicle, my sight went blurry and I couldn’t see for a few seconds and when I got back to my seat, Nathan’s T-Shirt looked like it was covered in tiny pink dots. We shouted the nurse over to tell her what had happened.
I was moved to a bed in the day ward and the blood was discarded, I was given some fluid on one stand and a form of Penicillin on the other. My temperature was now 39.7℃, I’ve never known it to be this high. The doctor came to see me and explained that he wanted to admit me to an inpatient ward for a few days to continue the antibiotics and monitor me because of the reaction and I was given something to take to stop the shivering because I was still visibly shaking (this worked a treat by the way and I instantly stopped shaking).
I needed the loo and I now had two Brians, so Nathan said he would help me wheel them to the toilet. I got up and started to walk behind him. The next thing I remember is Nathan saying “what are you doing?” and at that point I blacked out and although I don't remember, I was told that Nathan had to catch me as I started stumbling. A few seconds later when I came to, I had nurses, the doctor, the Senior Sister and Nathan all standing at the bed looking at me with concerned eyes. How embarrassing!
Even after blacking out and my temperature hitting 39.7℃, I still didn’t feel too worried, perhaps because of the trust I had in the medical team at the Freeman, or because my brain wasn’t functioning quite the way it should’ve due to the infection my body was trying to fight. I had never experienced such a high temperature and I think I was actually a little bit naive as to the consequences if it kept rising.
I was transferred to the ward and all I remember about being there is being told my temperature was 41℃ and being sick. I hate being sick but lately I’ve just learned that I have to get over it. That’s lucky really because this time I had an audience. And during times like this, you don’t really care what it is you’re doing, you just do it and hope you’ll feel better for it.
I’ve had to rely on my mam and Nathan to fill in the gaps for the rest of that period. I had conversations with doctors, I had reassuring squeezes from some of the nurses I know well, but my brain doesn’t seem to have created those memories.
At this point my temperature was continuing to rise, my blood pressure dropped drastically and my organs were starting to fail so I had to be taken to the ICU immediately. I vaguely remember some of this, I remember the consultant in ICU, I'd never met him before and he was trying to help me to breath because my respiratory system was failing and I was in distress. They tried to get me to use some of the oxygen masks but I just couldn’t do it. At the time I remember feeling frustrated like I should be able to do it, but appreciate the difficulty I was in at the time now.
The doctors were trying to treat the infection, they weren’t getting any indication of what it was from the blood cultures. They asked my mam and Nathan questions about whether I’d had any contact with children or if I’d been unwell but couldn’t get any further forward. My line had been oozy a few weeks prior and I’d had a course of antibiotics for it, that with no indication from the blood cultures, it made sense to remove the line. Ironically all of the tests showed the line was clean with no infection. The consultants think that the infection / bacteria was deep in the Hickman line and when the blood had gone through it, it’s pushed it out into my bloodstream. Regardless of the type of bacteria or the source, it was now a case of neutropenic sepsis and the task was now to save my life.
The Consultant suggested the best option was to put me into an induced coma. At the time, I just remember thinking, do whatever you need to do to fix me.
Unbeknown to me, as my kidneys were failing I was attached to a kidney dialysis machine, I was also attached to an ECG machine and had tubes down my throat and my nose. I had an oxygen tube, a heart rate monitor, a line in my neck, a cannula in my hand and urinary catheter.
They tried to bring me round after 24 hours but I was struggling to breath on my own so they had to put me back under and it was 3 days later, they woke me up again. This was so difficult for my mam and Nathan as well as the rest of my family and friends. As it was a critical situation, they can’t provide any guarantees as to whether or not I would pull through or if I did whether there would be lasting damage. The doctor did warn my mam and Nathan that even if I did make it, I could be on kidney dialysis for a long time after the event.
When I came round, I was really confused and can’t remember much. As I found during my last time in ICU, it feels more like I was dreaming, although I don’t have any vivid images or recurring themes this time round.
One of the memories I do have is that a nurse had to tie my arms to the bed because I kept touching the line in my neck and trying to get up. I remember feeling that the nurse didn’t like me and when she asked why I was trying to get up, I simply didn’t have an answer. I didn’t understand at the time, but I’ve learned that this reaction is because you are uncomfortable and uneasy, you’re trying to change the way you’re feeling but don’t know how to. Your brain is also confused, it doesn’t know what time of day it is, whether you should be awake or asleep. It almost needs retraining.
Nathan and my mam found that I was quite sarcastic, intolerant and just not myself during those early days, it scares me to think about what I must’ve been like and I hate hearing those stories - It’s like when you’ve been really drunk and your friends tell you about all of the stupid things you said and did and you just want the floor to swallow you up.
It took a few days to get over the worst of the confused, disoriented feeling and I was transferred to my home Haematology ward on the 3 Aug, exactly a week since that awful episode. I think even when I was back in my home ward, I was still a bit spaced-out, although I was far better than I had been over the last week.
It felt good to go back to my home ward, where the familiar faces were there to welcome me with hugs and well wishes. Blood cancer is such a specialist area and the haematology medical team on the ward are second to none. Although ICU were brilliant when I needed them, they have to know a little bit about a lot of things and their key objective is just to keep you alive I felt much more comfortable knowing I would be continuing my recovery in the safe hands of my home ward.
It was now that I started to process my experience and I have to admit, it scared the life out of me (for want of a better phrase). I was told at the very start of my treatment that 1) Infections would be the biggest risk and could be life-threatening and 2) if you get a temperature, you must make contact with the hospital as soon as it happens because the difference between 2am and 9am could be fatal. I had watched this advice play out and it was frightening.
I think I was also affected by how much of a shock it was going from feeling well to being so poorly in less than 12 hours. It was also hard to come to terms with the fact that I was in the hospital when it happened. Whenever I’ve had any issues in the past, as soon as I got to the hospital they sorted me right out. It really opened my eyes to how dangerous neutropenic sepsis can be. Now that I’ve had time to process it all and I’m thinking more rationally, I’m so pleased that I was in the right place when this happened so I could get the right care as soon as possible. If I was at home, I would’ve lost valuable time getting to the hospital so it was lucky I was there already.
Even though the experience was traumatic, I was so grateful to the ICU and everyone involved for saving my life because without them I wouldn’t be here. I still don’t ever want to go back though :)
I was in hospital for a further 4 days where I was under strict instructions to drink 2 litres of water a day to help my kidneys recover. I had some time with the physio to make sure I could get around ok and the consultant on the ward paid me daily visits to check me over.
I didn’t feel like I had as much fight in me this time round coming out of ICU, I felt a bit more fragile (even though this experience was much shorter and didn’t involve surgery). I think this was because of all of the experiences I’d had in between the two. I was so close to the end of my intensive treatment when it happened that in my mind the worst was already over and my head was already on the next phase. For this to happen when it did, it knocked me for six I didn’t feel like I could even think about starting the next cycle of treatment.. Thinking about it rationally, I should’ve been grateful that I was now finished intensive so my neutrophils wouldn’t be as low again.
During those four days in hospital my kidney function improved significantly, I got all of the bits and pieces removed including the catheter and a tube that was attached to an artery near my groin where the dialysis machine had been attached. The line from my neck was removed as well as the stitches where my Hickman had been. It felt so good to get them all out and be able to walk around myself and behave normally.
I’m now lineless so no doubt, I’ll be one of those difficult patients that has such bad veins the nurses can’t get a cannula in. Hopefully a break and lots of water will help them to recover. I’ll worry about that another day.
I made my first trip to the day ward a few days after I was discharged, I was nervous because I hadn’t been there since that fateful day. I took them some choccies for looking after me and everyone I saw asked how I was and were pleased to see me. It was over the next couple of days that I started to feel myself again and I’d managed to reflect on the experience and the fear slowly subsided. I knew that maintenance was not going to be so tough and I just wanted to get cracking. It was a couple of weeks later that my counts had recovered and I got the go ahead to start the next phase of treatment.
Intensive Chemotherapy was officially completed and good riddance.