That Time My Kidney Broke
A while back I wrote a post about My Neurological Fight & ever since I’ve been meaning to write about what happened to me a week after my syringomyelia diagnosis; as my exams are now over & I appear to be on a bit of a writing roll, I think it’s time I did just that… this post will be all about when my right kidney developed an abscess, started to shut down & I developed septicemia. This post is going to be very difficult for me to write & I’m going to have to rely on my mum for a lot of the details.
My last post about my illnesses finished with me finally being diagnosed with syringomyelia; for those of you that don’t remember what that is or haven’t read my other post (which is linked above) syringomyelia means that I have a (CSF) fluid filled cavity called a syrinx, or cyst, in my spinal cord; mine specifically goes from T5-T10 & causes me a whole bunch of issues. When I was diagnosed I was really relieved; I had been sick for 18 months before my diagnosis & being told what was wrong with me after so long felt like a miracle… but that joy didn’t stick around for long – less than a week after being discharged from hospital I was back, but this time it was for something very different.
I had been having pains my sides for a few days, but at the time didn’t think much of it – I spoke to a GP on the phone who suggested it was probably constipation & was prescribed some serious laxatives. But, a few days later (I believe it was on a Sunday afternoon) I buckled over in agony & started to scream because of the pain. My mum rushed us straight back to A&E; by the time we arrived I wasn’t able to walk & my mum had to take me in in a wheelchair. We checked into A&E & were told it would be a while before we were seen – at this point I was crying uncontrollably & trying my hardest not to scream out in pain, but after being sat in A&E for a while I couldn’t hold it in anymore… anyone who was in A&E that day probably won’t ever forget the screams I made that afternoon, some of them were even complaining that I wasn’t being treated; to this day I still cannot compare the pain I was in to anything else. I felt like I had been stabbed, was being repeatedly stabbed, & I was so, so scared.
Eventually, the staff had enough of my screaming & took me through to the A&E ward, buuuut I wasn’t actually treated. Instead they stuffed me & my mum into a small side room, laid me on a bed & pumped me full of morphine. After being given the morphine my memory goes a little hazy, but I distinctly remember two things;
1. I was still in agony, and
2. A nurse asked me to be quiet because I was scaring the other patients.
Yes folks, you read that right! A nurse asked me to be quiet because I was scaring the other patients… well, Miss Nurse Lady (whose face I still remember to this day) – how about you treat me & try to find out what’s wrong then?! But alas, that wouldn’t be done for another few days yet.
I was in that small room for hours, but eventually I was moved onto a ward with a bunch of sweet old ladies (yes, again – I even recognised a couple of them, & they recognised me!!). The doctors seemed to have decided that it wasn’t my appendix bursting, we had quite blatantly demonstrated that I was not constipated & so it was decided that the pain I was in was due to my back (even though it was in my right side…) & that I would be stuck on another random ward (at this point no one had taken any blood samples, no scans had been done & no urine had been sent to the lab) so I could be pumped full of morphine until the pain passed.
The Pain Did Not Pass
I was on that ward for three days before any doctor took me seriously; one night, the only night my mum had decided to go home & get some rest, I started to vomit. A lot. But this wasn’t your average vomiting. At first I was projectile vomiting the small amount of food I had managed to eat; then came the stomach acid. I don’t remember a lot of the time I was in the first hospital because of the medication, but I do remember how much my throat & mouth burnt when the acid came pushing it’s way up & out of my mouth. The nurses contacted my mum & got her to come back – they were really worried but there weren’t any doctors that could see me until the morning; that night was truly horrific.
The next morning came & I was knackered. I had been up most of the night being sick & my throat was so, so sore. Next came the hallucinations. I started to see things & my vision went a bit strange; my mum could be 5 foot away from my bed but I would start to panic & scream at her to get out of my face. I wouldn’t let the nurses near me & I couldn’t stop crying. This is the main part where my memory is empty – I remember thinking my mum’s hand was right in front of my face & I remember screaming at her to get out of my face; but I don’t remember anything else – everything else I’ve mentioned is from what my mum told me afterwards. Seeing me like this terrified my mum & pushed her to her limit, she started to tell them that I was getting worse not better, that they were covering the symptoms with the meds & that I was having new symptoms every day. Something was really wrong, & it was at this point when the doctor on my ward gave in & called one of the high-up doctors to come & see me. My mum has told me since that the doctor on my ward still didn’t believe there was anything wrong with me – as with my back I was being treated like I was making everything up & my mum still believes that he only called that doctor down to see me so that my mum would stop complaining.
My mum did stop complaining, but not because nothing was wrong. I remember a very tall man in an expensive suit coming to my bedside. He shook my mother’s hand & introduced himself to her – I think he then tried to interact with me but I wasn’t really there anymore so it was quite pointless. He asked my mum & I where my pain was & I managed to communicate that it was my right side that was the main problem – by this time my back & legs were aching a lot, but that was from the stress, tension & lack of sleep. Mr High-Up Doctor then pressed down on my side – and this is something I do remember, because boy did I scream. The doctor continued to examine me & then asked to see the results from my blood tests & urine tests. There were no results. Despite the nurses & my mum asking the doctors to send off some of samples it just never happened – so basically, I had been in hospital for three days, in absolute agony, vomiting acid, & none of the doctors had decided to do any of the basic tests on me. Mr High-Up Doctor called for some emergency blood tests to be done & they came back from the lab incredibly quickly.
When the results came back we weren’t told what they said but they did tell us that I was being transferred to another hospital. The results must have shown that my kidney function wasn’t what it should be as Mr High-Up doctor said I needed an CT scan immediately & that I was going to have to be moved to another hospital because they didn’t have the facilities to treat me. I was also taken off of the morphine (or given a lower dose) after the doctors had realised part of what was going on, so I have better memory of this bit of the ordeal; my mum went home to get some more of my things for the new hospital whilst I was in CT, & this is super sad because my mum missed the seeing eye dog that was in the CT waiting room 😦 It seems like such a ridiculous detail to include but it’s one of the only clear memories I have from being in the first hospital. There was a blind woman in the CT waiting room waiting to have a CT done & she had her guide dog with her – I was so, so excited & they let the dog come & lick my hand. I haven’t mentioned this yet, but I was only 18 at the time & because I’ve never looked my age the porters & other patients probably thought I was a lot younger so no one questioned why I was so excited about the DOG. But come on, after the last few days I’d had seeing a dog was bound to cheer me up!
After the CT scan I was taken to another ward so that I could be moved out the hospital easily & that’s when my mum returned – she wasn’t nearly as excited about the guide dog as I was! She was more concerned about the fact that my scan showed that I had a kidney abscess – parents aye! At this point I had absolutely no idea how serious my condition was; the description I’ve included states that kidney abscesses can be fatal, but I was absolutely ignorant of this. My mum says that the doctors did tell me that the operation I needed was an emergency but it didn’t trigger in my mind how much of an emergency it was. I was transferred to another hospital early evening & I was as high as a kite; I was so happy to feel more like myself again because they had changed the medication I was on that I was laughing & giggling like a toddler the whole journey (according to my mother anyway, I’m convinced I wasn’t acting nearly as ridiculously as she says). We arrived at the new hospital very quickly & just before saying goodbye to the paramedics who had driven me there, they put the sirens on for me; this of course made me laugh even more!
I was put onto a new ward (yep, another old lady ward) & was told I had to be nil-by-mouth (I couldn’t have any food or drink) for 12 hours before my operation – being nil-by-mouth is not easy!!! I did get some decent sleep that night though, which wasn’t induced by too much medication & because I was still oblivious to how serious my condition was I wasn’t really worried – my mum on the other hand was terrified & was awake most of the night. The next morning surgeons & an anaesthetist were asked to come into work early as my operation couldn’t be put on hold for any longer; & so I was put to sleep.
The operation I had involved having the abscess in my kidney drained, but because of the size of the abscess & how far the infection had gone I had to have a kidney drain inserted. The only knowledge I had of medical draining at this point came from my ex-boyfriend – he had issues with his lungs & often had to have a lung drain inserted; but I didn’t know what it meant to have one in your kidney. As the image I’ve included (from Google) shows, the kidney drain is inserted into the kidney, comes out of your side & the gross stuff is drained out into a bag; I had the drain in for just under a month, & yes it is as uncomfortable & inconvenient as it sounds. The tube came out of the side of my body, but it was more to the back of me than the front so it interfered with sitting & lying down quite a lot. The bag could only be removed when it was being replaced with a new one, which meant I had to carry it everywhere with me & the doctors were so worried about me getting another infection that I wasn’t allowed to properly shower until after the drain had been removed – dry shampoo became my life.
When the doctors came to see me post-surgery I asked when I would be allowed to go home – this is when I finally started to understand how sick I really was. The doctors told me that I had developed septicaemia (or sepsis) & that if I had been left for another 24 hours then I probably would have ended up in a coma & may not have survived (apparently if it had happened 5 years earlier they wouldn’t have known how to treat me). I was then told that I would be there for up to a month longer & would possibly have to have a nurse come & see me at home once I was released. I asked the doctors why I had got sick, & although nothing can be confirmed we think that the infection developed from a UTI; I had had a couple over the past few months but we think that it was actually only one big infection that was never killed off by the antibiotics. Instead the symptoms were covered for a short period of time & the infection was able to get stronger & spread into my other organs. The UTI, we think, was caused by having too much sex so basically, sex nearly killed me.
The next few weeks were pretty strange – when I came back from my operation I felt great, my mum insists it was the medication but only I know how good it felt to finally be rid of the headache that seemed to have become permanent – & the wee I had post-surgery would have put anyone in a good mood (they had filled me full of liquid during the operation to get the drain going so I woke up with a completely full bladder but no pain; weeing felt incredible)! For the first couple of days I couldn’t walk very well so I had to use a commode & the nurses & my mum took it in turns to help get me to & from it. I was only allowed to drink water at first but eventually I ended up having my own collection of food & drink; my table was full of bread, jam, Ribena, biscuits & sweets & when my mum was able to pop back home for a few hours she brought my Harry Potter books in with her.
This is where my love of reading was birthed – if you haven’t spent a long period of time in hospital then you do not know boredom, & because of how bored I was I spent every waking minute reading. It was the first time I had properly used books to escape from the real world & every morning for a week the nurses would laugh at the fact that I was on the next book in the series. Next I asked my mum to bring in some of the other books I had at home (mainly The House of Night books) & I spent my month in hospital eating jam sandwiches & reading. Two of the highlights of my stay include when my cousins brought me McDonalds & when my mum convinced me to venture out to the hospital canteen to have some proper food – this was my first taste of mac & cheese!
The recovery & the rest of my stay didn’t go smoothly though, & that is for three reasons. The first reason is because of one particular nurse – this woman was part of the night staff & I promise you she was evil. She had absolutely no sympathy for me & spoke down to all of the patients & the other nurses (apparently she was only a temp as well so she wasn’t even head nurse or anything!) One night, whilst giving me some meds, she flushed out my cannula a lot faster & more aggressively than she should’ve – I have very thin veins which means that sticking needles in me isn’t easy & that when I’m having IV antibiotics & having my cannula flushed, the nurses have to be gentle with me. This particular nurse’s actions resulted in one of my veins swelling up to the point where it really obviously stuck out of my arm, & yes, that is as painful as it sounds. The nurse was also really rude to both me & my mum so we ended up putting a complaint in about her – it turned out none of the other nurses liked her either.
The second reason was that, despite how careful everyone was, I did actually develop another infection. I can’t remember the name of the infection, but my mum’s cousin Googled it at the time & Google told us that it basically comes from hospitals that have unclean toilet facilities – yes, I know, it’s a lovely thought. This meant that I was in hospital for just under a month rather than for just over two weeks; it also meant I was moved into isolation – this involved me being moved from the ward into a small room where I was able to stare at a wall all day. Any medical professional that came in to see me had to wear disposable aprons & I was basically treated like I had the plague – it was such a glorious experience. Apparently this treatment was for my own safety & the safety of the other patients – the ward I was on had some very sick patients on it, including some who were dying, & if any of them had caught the infection from me it could have caused them some real issues. Having my own room meant I was really lonely because I obviously didn’t get to see the other patients, but I also didn’t get to see any of the nurses unless they came down to do my meds or take my obs (blood pressure, temperature, etc.). There was one particular nurse that I really liked, her name was Bex & she always laughed at how fast I read; she took a real interest in me & my story & she made the first part of that hospital stay a lot easier. There was two good things about being moved though – my mum was no longer moaned at for being on the ward 24/7 (as I was 18 & not a child she was supposed to only be there during visiting hours but she refused to leave my side apart from for two nights when she went home to rest & shower); having my own room also meant that I could sleep when I wanted & have the curtains closed when I wanted, so I did manage to get more sleep when I was separated from the main ward.
The third reason why the rest of my stay didn’t go as smoothly as it should have done is because of something that happened during the middle of the night. One night, toward the end of my stay I developed a really awful migraine; the migraine turned out to be nothing serious but because of how sick I had been they rushed me for a CT scan just after midnight. When we returned from CT my room had been emptied of all of my stuff & a cleaner was cleaning the room – all of my things were in bin bags & we had absolutely no idea why. The nurses went crazy, as did my mum; the cleaner didn’t speak English very well & so didn’t offer much of an explanation – in the end we figured out that he had apparently been told to clean out another room in the next ward but had got the rooms mixed up. He was made to retrieve all of my things from rubbish sacks, but he’d thrown all of my food away & had poured my Ribena down the sink (I was fuming), our phones were missing & some money from my table had disappeared. The phones magically reappeared but it was another hour before the cleaner came back with the money. A complaint was put in about him, & his bosses couldn’t work out why he was anywhere near that part of the hospital because none of the wards needed a room emptying – to this day we still don’t really understand what happened.
Things got even worse when, the next day he let himself into my room; my mum didn’t recognise him at first, but I did & I started to freak out – my mum was telling him to leave but he started shouting at us about how our fake complaint was putting his job at risk & that had children to feed & blah blah blah (suddenly his English was a lot better). I pressed my nurse button but no one responded so my mum went to get some nurses & when Bex & a few other arrived he was made to leave – a nurse kept an eye on my room door for the rest of the day. The bosses of the man came to see us to apologise & told us that he would be dealt with – we were told that if we wanted to put a formal complaint in we were more than welcome to, but to be honest, we really couldn’t be bothered.
I had my kidney drain removed a few days later – and I was awake during the process; which made me feel ridiculously sick. I was sent home a few hours later but the recovery process was far from over; I was housebound for weeks & it took me ages to get back to normal. My kidney still doesn’t work properly & I’m vulnerable to infections, I get pains in my side & I’ve been told to expect more kidney issues in the future. Part of the abscess is still in my kidney but it’s a bit like a deflated balloon; I also have extensive internal scarring which causes me a fair amount of pain at random intervals. I was only 18 when this happened to me but this is something that’s only supposed to happen to older people, & is almost unheard of in people that young – basically I’m just really unlucky.
If you’re still reading then well done! I hope you’ve learnt something about me & about your kidneys – please do what you can to look after them!