It's always interesting being on the other side of care. Infinitely more interesting when it's not happening to you, but your sociological drive kicks in despite you being unwell. Because you're unwell as it turns out as I wouldn't have had to be in hospital if it weren't for my Graves Disease. The Graves Disease that I haven't thought about too much for 10 years when I last saw my Endocrinologist. The Graves Disease that I had euphemistically renamed "bouncy bouncy disease" with the fabulous HA all those years ago when I was bouncing off the walls with startling intensity. The Graves Disease that had seen me on the floor several times in my work environments times over the now distant years. This time was no different. "Consistent at least …" I mused to myself " … if not a little sparodic".
Not three days before what I'll call "the episode" I'd seen the GP because of a persistent but increasingly noticeable tremor and had had the bloods done (again) to check that there wasn't thyroid involvement. It wasn't the first, second or even third time that I'd seen the "pathology vampires" to discount Graves. It was just lucky that on this occasion we caught the dysfunction that had been raging in my thyroid for some time. My GP was quite concerned. My thyroid function was well out of whack. TSH non-existent. T4 off the scale. He wanted to see me again and for me to re-establish contact with my Endocrinologist – reasonably urgently.
I rang Kath and we actually cheered knowing what was causing the tremor. It wasn't a mystery or for real investigation. It was known and manageable and I'd get this sorted so that it could settle down and I could get on with the world. I pulled into the work car park. Pulled up the handbrake. Pulled my things toward me and set out to begin the day. I felt the familiar vibration of my roller bag rattling across the bitumen. Wait. That wasn't my bag rattling. It was me. My hand, arm and whole chest was shaking. My chest thumped, my head hurt, my breath was increasingly short.
"I'll get into my office, settle myself down and carry on from there".
Good thought, hey? Shame my body and mind were just about to embark on a stand off of epic proportions. You know the ones in comic books where the forces of good and evil are pitted against each other, horns locked, the earth trembling around it, the air shimmering with electricity? It was one of those battles and that no matter how much I wanted my body to stop shaking, it wasn't going to. I looked at my wobbling hand and called my dear friend DR into the office.
"This isn't me. I can't control this and it's been going on too long today" I said quite distraught. "And now I can't stop crying".
Sobs engulfed me and I called a MET on myself. In very short order people swarmed around me. Managers, doctors, colleagues, staff. People shouting questions, asking about blood pressures (140/103 if I recall correctly. I've just learnt that it was in fact 157/104), wheelchairs, beta blockers, histories. "Has someone called Kath?", "Get a line into her". Phrases like "obvious distress", "chest pain", "thyroid crisis" and "ambulance with lights and sirens" tumbled about me and stuff was done to manage my immediate and barefaced wretchedness.
At one stage an older, wiser NUM locked eyes with me and said "I need you to focus on me. You're OK. You're in good company. I need you to take a slow deep breath and to remember that you've got people here who'll look after you". I concentrated hard on what she was asking me to do and as she held my hand a surge of tremors belched out of me again. "I've got you" she said firmly. And I knew she was right. I had to let these guys do their jobs and I was immediately grateful that I had. I wasn't an Education Manager or a staff member or anything titled in my workplace at that point. I was a patient.
It always interests me that the ambulance bay and the loading dock are one and the same place. Of course it makes sense practically speaking. "Things" need to be loaded into and out of hospitals be that stock or patients. We were waiting for the lights and sirens to arrive and the sliding doors to the dock, well, slid open and Kath appeared. Her eyes quickly snapped to mine. First, with her clinical hat, she assessed the situation and saw lines being put in, metoprolol being administered, pain being managed. She nodded and moved quickly to me to make sure that I was OK. She didn't leave my side for a week. It occurred to me that we were the "things"of the moment. I needed management. Surveillance. Medications. I needed to consume people's time. Space. Attention. I was one of the things that had to be done that day. I was using community resources in a loading dock built for it's very purpose. I was being offloaded to another facility where I'd consume some more resources as these palpitations and tremors settled. We exited the building unceremoniously on a stretcher and moved efficiently onto our next destination.
Hormones are variable beasts at the best of times. When working well they signal efficiently to distant organs to regulate physiology and behaviour. They rule through very cool negative feedback loops and processes and I've often thought of them as the grand master of the body. Because they operate 0bliquely although powerfully, we needed to get my symptoms – high heart rate, palpitations, chest pain, tremors – under control and to work more medium term to manage the thyroid itself. The atenolol went some way to settling things down although the chest pain was persistent. Blood results showed higher than normal troponin levels and indicated some degree of cardiac damage. The ensuing cardiac investigations were … intense to say the least and I winced through the rapid blood pressure changes and associated headaches that come with such interventions. The neomercazole would work subtly in the background to destroy my thyroid function and to dampen its havoc causing effects on my system until I could seen my Endocrinologist in 2 weeks. It was a solid plan to get me out of the the acute phase of this episode and back onto the righteous path of boring, uneventful living. I didn't want to be interesting or surveilled or be cause for concern or the centre of anyone's medical attention. I just wanted to be well again and without feeling so dreadful and erratic.
After a week's stay I was cleared to leave the bricks and mortar of the local public hospital and the diagnosis was settled. It was a thyroid storm causing all of this … ahem … excitement. A fact that we strongly suspected right from the beginning but because hearts are at the metaphoric and physical centre of care pathways, that was the focus of the admission. The week lying in a bed was sociologically fascinating and my observations were many and varied.
The nice nurse vs. the good nurse
Without a doubt if you're sick you need to be in a public hospital. Staff and resources abound even in this post pandemic period. Nurses of all descriptions checked in on me, watched my behaviour and did their best to provide "excellent patient care". They were indeed very kind. Much smiling, concerned looks, questions about my wellbeing, "Can I get you anything?" – no I'm fine thanks. Until the times where I really did need something, like some intervention because I was experiencing active chest pain, had turned ashen and was struggling for breath. The smiling, concerned looks and "Can I get you anything" questions continued and when I said yes, they promised to get someone for me. Not check my symptoms. Not grab an ECG machine and start murmurings about the need for a medico. Not listening to the patient who was clearly describing and displaying distress. When Kath went to the nurses' station to chase these actions up, the grad who was looking after me was sitting at the desk laughing and giggling with the "gang". She was an insider of an elite nurse group and the intrusion of a patients' relative disturbed her cool status. I heard Kath's tone change and the demand for assistance was out there. Duly chastised I had ECG leads on me faster than our young nurse had thought she was capable of given how busy (or otherwise) she thought she was. The obs were incidentally fine although this was the start of excluding cardiac involvement with this admission. What was most distressing was that if people with some health knowledge hadn't insisted on some action, my chest pain would have continued unnoticed, unchecked and unrelieved. She was a nice nurse but not a terribly good one.
Doctor knows best
I was increasingly interested by the assumption that what the medicos told you was gospel. I took very little notice of the posturing that most of them led with and cut quickly to questions about my care. What would the impact of this treatment be? What drug should act when? What test am I booked for and why? I did note the entourage that came with each team that saw me. The stand in medical professor (and I use the word loosely there) who busily gave decrees to his underlings while making pithy statements over the top of me. "She's experiencing X when Y should be happening. Isn't that right?". He didn't say "dear", but the phrase sat hiding behind his teeth when his mercurial tongue flickered. When I wasn't feeling irritated by him I acknowledge that he was a reasonable clinician but with an arrogance that I hoped had been stamped out as we had matured as a society. Maybe more as I have changed my view about the world than in society's maturation.
I knew I was ready for departure when after listening to the very many reasons that my scan couldn't be reviewed before Saturday, I spoke of discharging myself and following up with an external team. You're pretty sure it wasn't cardiac? The interim radiography report indicates no structural or flow issues? Then why are you proposing that I wait for 2 days to rule this out? Funnily enough when you start talking in the medical language that they didn't realise you could speak, the cardiology team comes around pretty quickly. Just as well doctor knows best.
A place for everything
Well, a job for everyone anyway. I've clearly got a private hospital lens over my care provision now and where we work our staff close to death by virtue of a "cost benefit analysis". Why pay two people when you could certainly have one do two, three, four people's jobs. Not at the same time mind you. Just over the course of time. They can be called on when needed and really, it's just a little bit extra isn't it?
The food service system was most fascinating. You order your meals via the new CBORD app and your food arrives on demand. Whenever you want it. And with whatever conditions your nurse has set up in the system.
The lovely man from the kitchen delivers your lunch directly to your bed. He smiles, checks your name and allergies, makes sure that your lasagne isn't touching your yoghurt. He wishes you a happy day and hopes that you get home soon. You speak to him about a couple of items left from breakfast and he tells you firmly but kindly that the delivery service and the collection service operate out of two different teams. He is unable to take that away for you, because of … mysterious reasons that I'm not sure even he can articulate. It's very clear though that it's not his job and he won't be doing it for you today. The breakfast items will remain until tomorrow morning when the breakfast removal team come by again.
It was mechanical and segmented, very rule driven and designed to segregate people from each other and the lines of role demarcation are laser sharp. And to be fair, no-one thinks to operate outside of their tightly prescribed rules. Food services people deal with food, nurses deal with nursing tasks, doctors deal with diagnosing and managing care. Rules which play a significant part in defining you as the patient in the bed. Staff weren't conscious of how strictly they stayed in their lanes, but as an outsider of that world, a patient, the laws of the jungle were clearly laid out for all to see.
You'll be happy to know that my Endocrinologist was surprised but happy to see me after a ten year gap. She was as delightful as I remember her to be. Thoughtful, welcoming and with a clear plan of action for this thyroid of mine. She spoke of her preference for medicating it first and then considering it's actions over time. She wasn't against any of my suggestions including that of surgery. Rather she worked seamlessly with both Kath and I as we settled on a titrating, decreased neomercazole dose and for review either whenever I needed it or in 12-18 months time. We spoke about possible causes for this flare up and the real but insidious impact that COVID-19 and stress has played on all health care practitioners' lives.
Currently, I'm willing my thyroid to behave and am hoping that everyone stays out of hospitals for so many and varied reasons.
Sending my thyrotoxic love to you xx
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