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.