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.

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Miraculous (part 2) My Unexpalinable Avoidance Of The Grim Reaper

“What’s the situation in resus? Do they have a bed?”

After sitting almost passed out in a chair but wondering if I should actually even bothered anyone, I lay on a bed in majors with the nurse wanting to move me to resus before she had even checked anything. She could tell from looking that I was in acidosis or some other sort of horrific mess, but neither of us had any idea that I should have been dead.

Really? Being taken straight to this area instead if the waiting room felt like an overreaction. I was embarassed and FREAKING OUT

They took my round to the resuscitation unit. The registrar used an ultrasound to try and find a vein. That failed. They called an ICU/A&E consultant to me – a guy who people treated like a king and they all looked to for guidance. There were five people around the bed I was on. They tried to put in a central line – got all scrubbed up in surgical scrubs and placed sterile drapes over me. They tried few times in my neck but there was so much scarring. They hit nerves resulting in pure pain. They at one point thought they’d punctured my lung. There was a large clot in the main vein feeding back to my heart that pushed the guide wire into my arm instead of my heart. That vein had looked bigger because it was congested due to the partial blockage downstream. The vein in the other side was tiny. A final year medical student from my university chatted to me through the whole thing. She winced with me. 

They got a blood gas from their failed attempt. I said I felt better, but I wasn’t sure if that meant I was about to get worse. I said I might not even be in acidosis, afraid that I was wasting their time, and the top dog ICU/ emergency medicine guy looked down at me and told me he knew I was without even seeing any blood results. Over and over I apologised for bothering them and they told me not to apologise even more times. Every member of staff was so kind and reassuring. By the time they came back with the blood gas my body was no longer able to compensate. My vision went, I couldn’t move, I couldn’t respond, but I could hear. 6.9. My blood pH was 6.9. And all these doctors stood around the bed seriously impressed that I’d sat an exam in that state, and alarmed that the paramedics hadn’t brought me straight into resus. I hadn’t wanted to bother any paramedics, and when I told them there were none and that is caught the bus and lost the ability to human upon my arrival they were pretty stunned. They couldn’t believe I was still conscious and had accomplished what I had (at that stage I was rapidly losing consciousness however). There was a collective panic. I didn’t have time. None at all. 

We had a problem. Everywhere you look in medical textbooks it tells you that a pH of 6.9 is fatal. 

A few of the Google search resukts that popped up when I Googled “blood pH 6.9”

The ICU/ critical care team were called by panicked A&E doctors, but the ICU/A&E consultant (who I shall call Dr M) stood by my bedside and refused to let them get involved when they showed up. He said I was far too sick to transfer my care and he wouldn’t even talk about it yet because he needed to focus on getting in a line to begin treatment and he hadn’t even been able to start trying to stabilise me yet. He later said that the guy wanted to try putting in a line but that it then becomes a challenge and I become nothing more than a pin cushion, and he wouldn’t have that. He said “she’s been through enough. I promised her I’d put in a line myself and I will.” Over and over he kept saying bed promised me but I didn’t remember. His promise seemed to mean a lot to him. Dr M doesn’t normally out in lines, but my access was so poor he wouldn’t let his registrars attempt it again, or anyone else who wanted to take a stab at the challenge for that matter. I laid there, fading fast, the kind and incredible Dr M talking away to me, calling me darling and actually saying my name. I felt safe in his care. In a hospital, I felt safe. I also knew I was in serious trouble.

They were so desperate they were in the end going to put in an IO needle (a needle drilled into your shin bone) but somehow Dr M got a small cannula in, and gave me treatment for an hour in hope of raising my fluid volume enough that he could find a vessel filled enough to get in a central line.

An hour later, with a doctor stood watching over me because Dr M deemed me too unwell to be left without the supervision of a doctor while he ran about chasing my blood results and calling ICU about me, my body stunned everyone again. My pH was 7.23. Dr M was delighted (you know you’ve been seriously unwell when the doctors smile and celebrate at the sight of a pH of 7.23, which would make them rush any other person into resus and commence emergency treatment). There was a collective sigh of relief and bewilderment. For hours all people kept saying was that they couldn’t believe how quickly my body recovered. An hour after that I was at 7.31, where the improvement stopped. It usually takes two days to pull me back from a pH of 7.1. A normal pH is 7.4-ish. A medical emergency occurs with a drop to 7.35. So 6.9 is… Significant.

Nobody could understand it (the unbelievable improvement in such a short space of time). But they were still scared – wary, unnerved. My brain has a nasty habit of swelling up in such situations and almost killing me, and Dr M was very wary because it was written all over my medical notes. He said my case was complex and that I was a high risk admission. He wasn’t comfortable for me to go anywhere other than intensive care and he also wasn’t comfortable for me to be moved until he was sure I was stable. I laid there with a hr of 140 and a dropping blood pressure. For a couple of hours those doctors did not leave my side. Dr M saved my life. And the entire time, he talked to me (even when I couldn’t talk back), and told me he lectures at the medical school that teaches half of my degree. He said he’ll probably lecture me at some point, and over and over told me to stop apologising and thanking him. He said I’d been remarkably patient and apologised for putting me through so much with all the cutting and stabbing around my neck and groin (where they eventually got a central line in). He defensively stopped anyone else doing anything to me, saying I’d been through enough. And again and again he spoke about how confused he was at the increase in my pH.

But my body had been through something it shouldn’t have survived (I’d been in acidosis for days). It was knocked for six. I couldn’t stay awake. My speech was slurred. Dr M started to worry that my brain was swelling, and so did the ICU team he was speaking to (they were called about me many, many times). They tilted the bed upwards to try and relieve any pressure that may be on my brain. More doctors were called. They panicked when I got sort of delirious and apparently complained of a headache as blood poured from my nose, and at this stage they immediately booked me for a CT. At 9pm the took barely conscious me in for a brain scan. I was like a vegetable. I had no energy to move and my breathing was shallow. 

Dr M stood at the end of the bed and told me it “doesn’t look too bad actually”. There was some artefact from the scanner machine, slight swelling on one side of my brain, and something that didn’t worry him because it only went through one layer. 

He relaxed a little then, but was still baffled by my miraculous improvement (both gases were checked, and run in the same machine). Although my pH improved stupidly fast, other results got worse before they started to get better. He sort of pleaded with me to stay awake, as they were all concerned with how drowsy I was. I still couldn’t move. I could finally manage to roll my head from side to side, but when they asked me to squeeze there hands I could only twitch my fingers. Dr M told me I had been very, very sick. He still couldn’t believe my miraculous recovery. The ICU team came down, and Uni Pal had joined WR Uni Friend (for a few hours they weren’t allowed back to sit with me because I was so unwell). The ICU team came down to see me again, a different shift this time. They decided I may get away with being on a higher dependency ward with a monitored bed. Dr M still wanted me in ICU, as he works there and kept saying my case was complex and they’d pretty much had to abandon protocols for my fickle body and I was an extremely high risk case likely to deteriorate rapidly, with potential for my brain to swell under the massive fluid shifts (I already puffed up everywhere else) . The medical team were reluctant to have anything to do with managing me but eventually I was moved to a ward. On the 11th floor, next door to the one on which I’ve almost died so many times. I am looking out on the view I looked out on almost exactly a year ago. This time I have my friends instead of my ex-Uni-Parents (but I wish I was on the ward next door with all the staff who know me and the nurse who calls me her daughter and the awesome HCAs).

WR Unj Friend stayed for the entire 10 and a half hours I was in resus (they usually only keep you in the department for a Mac of for hours because of stupid NHS targets made by people who clearly don’t appreciate that quality of care is more important than the speed of it). Uni Babr panic called my Accomodation and they said I wasn’t there (must have checked my room) so she called the hospital and was told that I was in the resuscitation unit. HK Uni Friend, who had, while I sat in the library (with uni pal and WR uni friend) messaging her the words I AM LITERALLY DYING with no idea how close I actually was to death, been mainly focussed on her coursework, how much it was stressing me out, and kept asking me to send her pictures of mine and explain stuff etc (which majorly annoyed the other two I was with, and baffled me a little at how my situation was seemingly overlooked).

WR Uni friend was astonished when I told her that throughout last year at university I’d been that unwell multiple times. She’s had no idea how bad it was until she sat and watched it (she didn’t see the bad part. They asked her to leave and for ages she sat waiting to be allowed to see me again). She sat reading her book while I drifted in and out of consciousness (remaining mostly unconscious) for hours afterwards, with the constant presence of a at least one doctor and six blankets (because my body was like an ice block to touch due to the fact that it didn’t seem to have the energy to regulate its own temperature temporarily)

“For me this is what I call life” Bastille, What Would You Do (this is a cover but I can’t remember who the original is by).

After 10 1/2 hours drifting in and out of the world in a resuscitation unit I’ve almost died in so many times… I finally had the energy to move my arms. so here is a picture of my kegs buried under a bajillion blankets.

I escaped ICU somehow.

I cheated death somehow. 

I very, very nearly met the end. None of us were expecting that pH. 6.90… Damn. I cannot thank the A&E staff here enough. They saved my life. They were so kind and friendly and they all told me I was very nice and tried to stop me feeling guilty for bothering them, saying that they didn’t have better things to be doing (as per my explanation as to my guilt) and that I was indeed worth all the effort and they were sorry that they weren’t fixing it. 

6.9 though. And I wondered if I was unwell enough to justify bothering them. If I’d have left it an extra hour… I’d have gone. 

I’d have gone.

This time there shouldn’t have been a way through. My body is superhuman. 

The things currentky keeping me alive. only three IVs. That is not a lot for me!

Sitting an MCQ test and getting the bus to Whitechapel all with a blood pH of 6.9, a miraculously rapid improvement after what I can only describe as mass panic amidst medical staff, swelling on one side of my brain… Pretty impressive for a Tuesday. It’s was a very long day. 

I’m too scared to sleep. The nightmares I have in hospital are all about hospitals and then I wake up in one. I still can’t move. I’m laying here like a rag doll and people have to move me and use a pat slide to get me from one bed to another. But I have my next bit of coursework with me and I hope to submit it on time. The world won’t stop just because mine is paused.

No way but through