Where I’ve Been

It’s been so long since I posted on here that I almost forgot how the whole thing works. Mind you, my body has been through so much I have forgotten an awful lot.

When I last posted on here, I had just got a puppy. I had torn a couple of tendons in my pacemaker shoulder, the discovery of which made me stop trying to get someone to listen to my fears that my pacemaker was infected. I’d been told it would be dealt with, told they were on it, and neither of these things were true. Until my puppy was home, and I became critically ill. 5 paramedics, a blue light ride, a swift transfer to the heart centre… where I was left in a bed for 4 days with sepsis. I was left until my kidneys were giving up, I was in acute respiratory failure with ARDS, couldn’t even talk or maintain anywhere near a normal oxygen saturation, and was mostly unconscious. They told me something would be done early the next week, and I accepted that I was going to die that weekend. I didn’t, because one doctor freaked out at my condition, and I was put in a medically induced coma, the pacemaker causing the sepsis and endocarditis was removed, and I woke up 12kg heavier (retained A LOT of fluid), intubated, and lucky to be alive. I woke up just before Christmas, and was moved back to the CCU where I knew everyone.

I lost a lot of muscle mass in the ICU, and the sepsis hit me hard (I have been left with lasting and significant effects). I couldn’t hold my head up, couldn’t even lift my limbs. I had to learn to walk again, which took months. One physio would have to take each leg, because if I tried to hold myself up my legs would buckle. I had lost all muscle memory. I still can’t do stairs. I still can’t walk far at all, and I still don’t walk normally. I will be in a wheelchair for many months more.

The infection hung around for a very long time, so long that they gave up trying to clear it and decided to do the open heart surgery I was waiting for whilst I still had the infection, so that they could remove the also infected temporary pacemaker that was taped to the outside of my chest. I had a thoracotomy on Valentine’s Day, and they inserted an epicardial pacemaker so I also had a wound in my stomach. I have a ridiculous pain threshold – I’ve walked around with broken bones for weeks, I have constant nerve pain, it takes a lot to make me flinch… for the first time I recall, I cried in pain. I writhed in the bed. I was told it was THE most painful surgical procedure, and all I’d been prescribed were lower doses of morphine than those my body was used to, and IV paracetamol. I also couldn’t stop vomiting, which really really hurts when you’ve just had someone slice your side and stomach.

On the 4th of March I was sat there talking to my nurse, she left the room and I just felt like death. I pressed the buzzer and she hadn’t even got far away so she came back. I couldn’t move. I was stuck sitting on the edge of the bed. I was sweating profusely all over, I felt so so weak, I felt like I had sepsis again in terms of how unwell I was. I thought I was dying. Overnight, breathing got more and more difficult, and my breaths became shallow and laboured. I had pain above my abdominal wound, and I couldn’t talk. The consultant came to see me before ward round. Doctors were constantly in and out of my room. I couldn’t move. I couldn’t talk. My arms and legs were YELLOW – I had no capillary refill at all, my limbs looked like those of the cadavers I’ve worked with in anatomy sessions before. But my temperature was fine, despite my icy limbs. I went for an ultrasound of my abdomen which showed nothing. I was about to leave, and the scanner dude had put everything away, but I knew something wasn’t right. When I asked him to scan again, and this time higher, crept just above my diaphragm with the prove and asked me if my pleural effusion had always been infected (I’d had a large collection of CLEAR fluid around my left lung since my surgery). I said it hadn’t. So he added that into his report and the doctors ordered a chest x-ray. I had no left lung. My trachea was bent and being pushed over towards the right side of my chest. The entire of my left thoracic cavity was white.

They took a sample to culture whatever bacteria had colonised the fluid. And when the doctor drew back everyone stopped talking. It was blood. I was too unwell to take for surgery – the thoracic surgeon wanted to but anaesthetics wouldn’t put me to sleep with a deviated trachea and only one lung. So they put in a chest drain. In 5 minutes, 1 litre filled the drain, so they shut it off. In total we drained off 3.5 litres of blood. There are around 4.5 litres of blood in someone my size. My limbs were yellowish white (rather than purple) because they didn’t contain poorly oxygenated blood, they contained virtually NO blood. I was given some blood transfusions (and obviously a lot of oxygen), and immediately became a better colour. On my birthday, my little CCU family celebrated with me. The doctors put their money together and got me a really fancy cake, and the entire ward piled around my bedside to sing happy birthday to me and my chest drain. I had a CT scan. It showed a HUGE clot left in my chest, taking up around 1/3 of the space where my lung should be. I was finally stable enough for surgery, so that happened.

A week after that, I had another surgery at a different hospital. I was transferred back to the heart centre to be discharged, and got frustrated at waiting. I hadn’t let myself look forward to the date of discharge until it came around, and I was so eager to get out. I couldn’t believe my moment was there.

The consultant on the ward that week (now my consultant managing my care at my request) came and sat on my bed. She told me there was bad news. I thought she was going to say that my infection markers hadn’t dropped any more since the surgery, and that I needed more antibiotics. Instead she told me I needed another open heart surgery thanks to a very rare complication, one I had actually felt occur the day before – I’d told them something felt different, and they had done the necessary tests but not told me the results until they knew how to find the words and had some sort of plan. I just kept saying “I don’t know what to do” because I didn’t – I had no idea what to say, what to feel, what to do. And then I told her I was smiling because if I didn’t smile I would cry, swiftly followed by “oh wait I might be about to do both” and then the inevitable tears. She cried with me. That validated my emotions – if it was bad enough for someone who sees serious illness and heart stuff every day to cry in front of me, I felt less bad about being pathetic.

A week later, on the 29th of March, a really really lovely cardiac surgeon sawed through my sternum (different route in this time, seeing as the previous way clearly hadn’t worked and we were going for a different approach). The anaesthetic team knew me by name even though they had never met me, which was alarming because that’s not the kind of situation where you want people to be like “omg YOU’RE (me)!” The cardiac physiologist I have seen since I was in secondary school was in the anaesthetic room with me, and he was going to be in charge of my pacemaker. I woke up in the ICU. The sternotomy was the least painful of the three major thoracic surgeries I had.

After 110 days in hospital I went home. After 145 days away from my puppy, we were reunited. I am not whole. I am traumatised. I am broken. I feel like I have a very bad flu because of post-sepsis syndrome (also have significantly reduced cognition, debilitating fatigue, weakness…). I am still very unwell, and my left lung doesn’t seem to have any breath sounds, which might explain why I am always so breathless. I apologised for my consultant for not pushing myself hard enough, and she broke down everything that has happened to my body in those 110 days (systemic inflammatory response, ARDS [acute respiratory failure], lung injury, musculoskeletal injury of being in bed for 4 months, orthopaedic and musculoskeletal injury of sternotomy, abdominal surgery, pneumonia, lung injury, a 3.5 litre bleed that almost killed me, the infection my body fought for around 12 weeks, damage to my stomach/the nerves supplying it that has led to gastroparesis, nausea, vomiting… the list went on and on and on). She told me I’m not pathetic. I have survived an ordeal not many could.

Except, I did not survive.

I will never be who I was again. I cannot live alone. I have to be carried upstairs by my little brother. I cannot cook for myself. I can’t study. I have had to leave my flat and my masters degree course. I don’t know if that will ever change, neither does my consultant. But we hope I’ll get better than I am now. I’ve already improved so much in the weeks I have been home – I have built up to being able to wash and dress myself without help, only napping for a few hours in the day, standing up without any help, walking (well, my version of walking) to the kitchen and the bathroom instead of using the wheelchair, I can sit up unassisted… I just… I don’t feel like me. I don’t feel like I came home. And the PTSD… well, I’m having panic attacks for the first time in my life, and my mental health is more… mental rot.

All because I was left to get far, far sicker than I ever needed to (which numerous doctors have admitted, so much so that they asked if I could be mentioned at their morbidity and mortality meeting).

 

I just downloaded The Sims 4 for free, and I plan to just… try and create a version of me that is a little more capable, and live in an alternate world for a little bit. I don’t know what else to do.

 

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Trying to Catch a Break

I’ve been missing from this blog for months, I know. My heart (Skippy) seriously deteriorated, and he took me down with him. 4 months ago, I couldn’t lift my head off of the pillow. Skippy simply wouldn’t let me. I spent 2 days in February drifting in and out of consciousness alone in my room before finally managing to stay “with it” for long enough to reach my phone. I ended up in hospital, and I don’t remember the days that followed, mostly because I couldn’t stay awake, and when I could, I was very dizzy and spaced out. I wasn’t really with it enough to be scared. Retrospectively the whole thing is terrifying (it was also a very bad time to have PTSD due to events in hospital so horrific several people could lose their jobs if I spoke out about them).

Nobody knew what to do to help. There were ambulance rides between hospitals, and there was, it felt, a loss of hope. We took drastic measures, and we didn’t take them lightly. Because of delays through the NHS, we were forced to use the facilities of a private hospital. My family and I couldn’t afford that, but an incredible person I met through this blog started a fundraiser that covered 1/3 of the surgery costs. On 29th of March, I was put to sleep. I woke with a new pacemaker (Pablo). My heart now won’t beat for itself again. We’ve destroyed almost everything that could tell it to, and each chamber is now paced individually. I still struggle with this – I don’t feel I was worth the effort, let alone the cost. I have to pay my parents back, and the savings I had spent so long gathering to be able to fund a service dog are now nowhere near enough.

Three months after that surgery, I can walk again (not far, and my legs and heart protest with each step, but it’s still incredible). I am currently in Sheffield staying with a friend who remembers watching me have a cardiac arrest the second time we met. Prior to that, I finally met the incredible blogger who helped to fundraise my surgery, and she was so much lovelier than I could even have hoped for. Three weeks after the surgery, I got to see Bastille in concert. I sat with their friends and family, and got to meet the guys themselves.

On Thursday (12th July) I confirmed my place to study a masters in cardiovascular science at prestigious university in London. Research that has taken place over the past few years has given me the life I have now, offered solutions where there were none, and developed the techniques that played a part in that. But there’s still so much more to do in terms of research. I want to help make sure that other people’s futures differ from my past. If I can spare just one person from just one element, that’s enough.

I will be graduating on the 26th of July with a 2:1 (the lecturers who have contacted me, and medical professionals, and even my family, are impressed with that, but to me it is a bittersweet moment – I look at that grade and see a reflection of my health, not my brain). I had a mini stroke in May halfway through exams (as if there wasn’t enough stress already). But my health never has been, and never will be, and excuse to me. It isn’t me. It isn’t who I am. It will never define my capability. I’ve written thank you letters to the people who have played a part in getting me to where I am now – from police officers who found me on a train station floor 3 years ago, to lecturers, to cardiologists, to friends, and to paramedics who have carried me down flights of stairs but stayed in touch. My degree felt, and feels, as much theirs as mine. Some of them cried when I told them my news because they were so pleased. Most were stunned. We all celebrated.

I even celebrated as I was taken down to theatre. On the 12th of July I not only accepted my masters place, but that night I ended up in hospital. I had emergency surgery on Friday 13th, and there’s now an open hole in my abdominal wall that will take a couple of months to heal. My immune system bailed on me and let an abscess develop at my infusion site, and some surgeons had to step in because antibiotics aren’t very effective when your immune system is bailing. So I’m 140 miles from home, in a lot of pain, and being in hospital was very, very traumatic (was given none of my regular medications, including heart meds and pain meds, for the entire admission. Was given no antibiotics until the morning of the day I was discharged, they seemed to forget I have type 1 diabetes, had no idea how to use a portacath so pressured me into letting them stab me unsuccessfully…). But I am out of hospital. I am alive. I can walk. I feel beyond lucky.

While I was high on morphine post-surgery, and between the flashbacks and nightmares that left me sobbing and shaking, I decided I wanted a hamster. I found an 8 week old hamster that the lady hadn’t touched for 2 weeks and didn’t want. He didn’t have enough bedding and the cage floor was almost bare. Whilst high, I named him Dash Stille, and yesterday my friend took me to collect him/her.

I can’t afford a service dog, which would genuinely change my life so much. But now I also can’t afford a place to live, and my overdraft is currently paying for my food. My parents refuse to subsidise me until I at the very least have a job, but even lecturers at university appreciate that my health is nowhere near good enough to sustain any form of employment right now, and discouraged me from even thinking about employment (my lecturers also call me “Superhuman” and one has bought me a cape for when I graduate). I want to be financially independent. I really want more than anything else to have a job. I want my own flat, and to get a puppy and train him up as a medical and mental health service dog so that I can be more independent and my health will be more stable. I have to somehow pay my tuition fees but am hoping I can get a loan for that. I refuse to live off of the state, and I have no credit history so can’t take out a loan. There’s currently an open hole in my side that HURTS more than the nerve pain I have left over from so many heart surgeries, yet my financial situation is stressing me out more. Money shouldn’t make the world go round, but it does. I have been too unwell to attend a single lecture in my final year of university, I know that attending labs and lectures for my masters will wipe me out and a job on top of that will break me.

But I’ve got a little hamster guy (so I have a focus and a distraction and something dependent on me which means I have to stay on the planet no matter how awful the PTSD gets) and I am out of hospital and alive. No idea how to keep doing this. Left a lot of awfulness out of this post. Sure a lot more will follow it.

No way but through. Somehow.

Not What We Expected

“But if you close your eyes

Does it almost feel like nothing changed at all?

And if you close your eyes

Does it almost feel like you’ve been here before?

How am I gonna be an optimist about this?”

Bastille, Pompeii 

“There’s a pain in my heart and a pain in my chest

I wanna feel human again

There’s a pain in my head and I’m losing my breath 

I wanna feel human again

Human again”

Kodaline, Human Again 

As I laid in the CCU after 6.5 hours in theatres and just as many after that trying to shake off the anaesthetic enough to remain awake, these are the songs I played. I had prepared myself for outcomes at either end of the spectrum: new me or no me (fixed or dead, basically. Improved or killed). I hadn’t been prepared for the in-between. I hadn’t been prepared to wake up in recovery to the nurses discussing my tachycardia, and manage to hold on to enough waking moments to look up at my ECG trace and find my heart was just as grumpy as before. Before the anaesthetic snatched me back to (a far less deep) sleep for a few hours, I thought just long enough for my heart to sink. My consultant bumped into my mum on her way to the CCU as he was leaving the staff changing rooms, having swapped his surgical scrubs for his suit again. He told her some of it was guesswork, and that the last resort part/ all of it may need to be repeated. The next morning a doctor I hadn’t met before looked at the 10 lead ECG I was hooked up to and told me the surgery hadn’t worked. I’d need it again. Just like that, like it was nothing. I already knew. To them it’s just everyday, they get to walk away from it, they get to switch off from it, shut the door on it, walk away from the consequences. But to me… this is a disproportionately. Big. Deal.

(Oh, in case you haven’t noticed yet, Skippy – my heart – has totally stollen this post… apologies for the boring medical nature of this post but… this is life, and unfortunately I couldn’t choose to live a different one so I could blog about something worth reading about. I hate this part of me, this side of my life, but it’s a huge part of my life and if you choose to read on then… thank you)

In 24 hours my body went through it all: the terror of being in a hospital (as the surgical team all lined up in front of me and introduced themselves one by one in theatre, I trembled with fear and told them I was simply cold. The consultant anaesthetist held my hand. One of the theatre nurses that wheeled me to theatre had PTSD and was awesomely understanding), an anaesthetic, keyhole heart surgery (including a new-ish procedure to try to modify/remodel part – or as they discovered, two parts – of my heart), acidosis on top of already low blood pressure post-surgically (yes, I went in for heart stuff and could have died of a different thing), bleeding from one of the four puncture sites they went in through that resulted in a lump the size of my hand forming under my skin, two raw and bleeding cuts at the back of my throat from the endotracheal tube (which hurt to an impressive yet unexpected degree and left me unable to talk for a while but now just hurts like someone has taken a cheese grater to the back of my throat) oh, and rather a lot of PVCs (extra heartbeats).

I made one nurse cry that night by telling her I’d planned to join a gym when I woke up, and that I’d bought myself running shoes for my 21st birthday that I promised myself I wouldn’t wear until it was safe to try and run in them. I almost cried as I told her I felt like I’d never get to wear them. We talked about me – about the past few weeks, about all my time in hospital, about how people walk away from that because they don’t know how to deal with it. She told me I was incredible and that she wanted to clone me. I pointed out that probably wouldn’t be the best idea, given y’know… me. She spent about ten minutes trying to get me to say I would use my buzzer if I needed anything and there was nobody about, because I felt bad asking for anything at all. So naturally I just… didn’t tell anyone. The pain was bearable so I wasn’t going to bother anyone for pain relief, and I could hold my pee for over an hour before I would guiltily murmur between profuse apologies that the dam was about to be breached. I’m terrified of medical people. These doctors and nurses were so nice though, they spent ages just talking to me, trying to relax me, telling me they were paid to be there for me and it wouldn’t annoy them at Allan’s could I please stop thinking of myself as a bother and let them be there.

Emotionally I was done as soon as I fully came round that evening. Even as they discovered I was in acidosis in the early morning, I still told them I was going home. I’d had a sleepless night of crying and flashbacks and fear. I felt disempowered and afraid and I was intimidated to the point I was almost too scared to speak to anyone medical. They didn’t really know how to manage acidosis (seriously, I had to tell them until the appropriate consultant appeared) so it was pretty easy to persuade them all was well a few hours later with no further blood tests.

After the surgery I got breathless standing up. I got breathless walking to the bathroom. My chest HURT even though they hadn’t had to go in through my chest (I was warned that if the whole keyhole thing didn’t work, they’d take the more direct route instead). Not too unfamiliar. Only, I hadn’t done anything. And I hadn’t gone in there like that, and this pain was in new places. I wasn’t worried by it, just annoyed at my heart. The doctor was all “well you did have heart surgery less than 24 hours ago… it’s going to be a little upset and sore while it heals itself.” Upset and sore it is indeed.

I’m home now, and I feel worse than when I went to the hospital, which I wasn’t prepared for at all. It’s nothing disastrous, just breathlessness even when I’m laying down (except I currently can’t lay flat, so it’s sort of… laying back against 5,000,000 pillows). My lungs feel heavy, but no amount of air can satisfy them. If I stand I get so dizzy that I become spaced out and stupid. Walking makes me pant like I’m sprinting. My abdomen has slowly increased in girth to the point that my tops are so stretched they get pushed up and off of it. My ankles overflow from my socks. My legs are ice cold from about halfway down my shins, my hands are so cold the “capillary refill” is more like a “capillary NOPE” etc. etc. I’m exhausted, and pretty surprised about that to be honest. Even though none of this is new, just… worse than before.

I’m disappointed with how things are right now because my expectations were miles off of this either way. I wasn’t prepared with even the thought of more of this, especially not to this degree. My Brian (ok autocorrect missed up but I rather love this typo. I refer to my brain as Brian anyway) hadn’t even thought of that as a possible thing. I knew it might not work, but I didn’t quite manage to carry that though on to the “I will still feel like poop” part of that realisation. The success rates of the new and more complex one of the procedures (the last resort we were trying to avoid) weren’t that reassuring on paper but people kept telling me I was going to wake up a new person with their hope and optimism. But hope and optimism give you further to fall in order to reach reality. And so I’m disappointed, but… I don’t feel it yet.

To start with in the hospital I was deflated. There were tears (partly due to the drugs, which made me very weepy, partly to do with the fact it was a hospital so my PTSD had a field day, and partly because it hadn’t worked). I just didn’t know what to do, how to be, where to go next in my life, what the point in anything was. That’s a difficult place to be and my body was too exhausted to let my mind stay there. The staff said they were sorry, as if it was there fault my heart is a rebellious idiot. I just laid there and had a brain-to-heart conversation in which I told it exactly what I thought of it. It had even played up during the surgery so that they couldn’t get access to a particular part of it; additionally, my heart taunted them, behaving beautifully until they went to do the second procedure, and then taunting them by being a little poop and immediately refusing to behave in the way they wanted it to. When they tried to remodel one region of my heart (part of the third, new procedure that we hoped we wouldn’t have to do but then decided we kinda had no choice) my heart decided to play a trump card and reveal another anomaly, but when they tried to get near it they realised that they were so close to my phrenic nerve that if they slipped and damaged the nerve I wouldn’t have been able to breathe again, and by that route they kind of had less control of what they were doing, so they had to stop.

So right now I’ve no idea what I’m doing. No idea how to be. Plenty of thought but no emotional response to those thoughts. No idea what to do from this point onwards. Can’t even comprehend the current situation because my brain hasn’t accepted it yet. Don’t know how or where to go from here. My mum keeps telling me to revise and care about the exams I have in two weeks, but I don’t even know where my brain is at, and when it comes back down to earth and the hopelessness I felt when I first realised the surgery hadn’t worked returns… it’s going to be hard to find the motivation to get out of bed. So now, while it’s all surreal and I’m stuck in an emotional void full of thought with no feeling (which really was a smart place for my brain to stick itself – dissociation is a great temporary coping mechanism, and I do it a lot) I am trying to get a life. By that, I mean I am sleeping a lot, trying to beat my body into submission by pushing it to do as much as it can until it rebels to the point that I give in, cuddling a Labrador a lot, sometimes making lecture notes, and eating ice cream (in the words of one person who saw it, my throat has been “cut to ribbons”)

But see, I will get my head around this. At some point the dust will settle. Kicking and screaming, time will drag me through and then back into the boxing ring for the next round. Everything ends – the good, the bad, the amazing and the hopeless. No way but through all of it, even when you want to stay forever, even when you see no way out or never want to go there at all. And that perspective, that important, grounding reality, will return to my brain. So I will leave you with the lyrics from another band whose songs have got me through a lot, whose lyrics I cried to on repeat in a coronary care unit until finally I stopped feeling (many of their songs spring to mind, but this one was written about having hope when there isn’t any so…)

“Falling in this great divide 

The earth it splits, and my feet on both sides

Though my faith is shaky


I keep on hoping (keep on hoping)

Keep on hoping (keep on hoping)

When it all feels broken 

Got to keep your hope alive
Falling in this great divide

The earth it shifts, and I’m on the other side 

And I swear the world is going crazy


But I keep on hoping (keep on hoping)

Keep on hoping (keep on hoping)

When it all feels broken 

Got to keep your hope alive”

X ambassadors, Hoping

And that was the song, right there. That was the song that got me through that night, that initial realisation, the fear (along with Bastille and some Imagine Dragons and other artists whose lyrical art has become an emotional lifeline for me through the hardest things my body and the universe have thrown at me).

Maybe I will start saving for a games console, and I can live as a healthy normal human in a video game.

In order to keep on hoping, I’m going to have to start. That’s something scary and difficult for me to do, because it opens you up to a whole world of let downs and hurting (mostly because reality is a complete boob).

Even if we tried and failed, we can try again. Another anaesthetic. Another gamble. Another chance. And if that doesn’t work, then I’m in a bit of a situation. But maybe at some point before then my brain might decide all is not lost. I just know that in the next couple of days I’m going to feel like the world ended, because it carried on exactly the same as it was. I just don’t understand. I’m right back in the situation I was so desperate to escape from, the situation I’d gladly have died on an operating table just to leave behind.

This is all far tougher emotionally than it is physically. Forget the health hiccups. It’s the emotion they kick up that is killing me.