Waking up in the ICU – I cried. I was alive. I couldn’t fucking believe it. I was so happy – I cried. Then I tested my newly positioned windpipe with a massive intake of breath and laughed because it never felt so good… I moved my hand to my chest to feel my heart beating and laughed again as I felt it beating in its right position – not wandered off over by my right armpit area as it had been the last 5 years! A lot of bed baths, pain and mobilisation later… Five days later I was discharged home
Then I woke up into my second week post surgery unable to turn my head to the left. I attended the local hospital where they diagnosed an ear infection and sent me home with antibiotics. On the second day of antibiotics – I found myself ringing my mother to whisk me to the emergency room because I was convinced I was on the verge of a heart attack
A lot of prodding and an admission later – I was sitting in the hospital room – post surgery – thrilled that I had survived the repositioning of my organs – yet terrified because I was now readmitted to a different hospital and feeling quite unwell… I tried to reassure myself it was a simple infection and the antibiotics would sort it out…
Only I couldn’t help but notice that I could no longer walk to the toilet without feeling like I was suffocating. I couldn’t help but notice my pulse staying in the steady 120’s every hour they would check it. I couldn’t help but notice – I was changing my clothes several times a day because the fever was drenching everything I touched. I also couldn’t help but notice that I couldn’t get a straight answer – anytime I asked a question.
Stuck in the isolation room as the days dwindled on – regular checks and refills of meds. I knew that my body wasn’t repairing. If anything I felt desperately ill in the 3 days I had been an inpatient by day 4 – I couldn’t stop vomiting. The pain was immeasurable – the fever was overwhelming. More frightening than any of that – was the feeling that I just couldn’t take a breath… gasping – I rang the bell. Counting the minutes of no response until i started screaming for the nurse as my heart hammered in my chest and the sweat dripped from my face
In she runs – overworked – exhausted – overwhelmed and under-equipped to deal with the situation. She checks the vitals – everything has skyrocketed, she doesn’t’ know why.
“How do you feel?” she asked
“Like the bottom of my lung has fucked off and I can’t breathe” I replied in one worded bursts – gulping air in between each word
“Ok” and with that she left – I assumed to inform the doctor
Terrified that I was going to be left in this room and be found in a heap on the floor – I text a friend and asked them to contact the hospital that had performed the surgery and to give them all info
A transfer was requested from the local hospital to the surgical hospital 2 hours away. But the ambulance wasn’t free to pick me up until the next day… a tad more forcefulness from my friend and another elevation in heart rate later the ambulance was called again – this time we were told two hours.
Two hours later I was being brought off in the ambulance while my friend followed by car. Less than 20 minutes into the journey my heart rate elevated again and I felt as if I were being roasted alive.
“Do you’ve the heating on?” I banged out in one worded gasps
“No love, it’s cold in here” replied the paramedic
“Can I strip?”
“Whatever helps”
“Do you’ve a fan?”
“Only air conditioning”
“Can you turn it on?”
Up he stands to turn on the air con and wrap himself in fleece and blankets – him rattling with the cold and checking my vitals every few minutes and me feeling like I was baking under the heat of the sun – despite the freezer like conditions
My breathing rapidly became worse and by the time we reached Dublin – my blood pressure was extremely low. I kept zoning in and out. It was on that journey that I truly thought – this is it. I’m going to die
Rushed in to the hospital for transfer – there’s an immediate flush of medicines being pushed into the cannula in my hand to try and regulate my heart rate and push out some of the fluids built up around my heart and remaining lung that were preventing me from breathing
The next 4 weeks was a journey of excruciating pain as procedure after procedure was carried out to remove the fluid that couldn’t be removed any other way other than to pierce through into the lung and heart to add drains.
My body ached in a way that its never hurt before. The exhaustion was phenomenal. The weakness was debilitating. But more than all of that – the most difficult thing to contend with was and still is – my mind.
As we had episodes of my heart racing, chest hurting – staff running in laying me flat on the bed – telling me to deep breathe – telling me to “bear down like you’re having a bowel movement to try slow the heart” – feeling it thundering in it’s now correct position as if it were ready to burst free of it’s captor… alarms ringing – people filling the room – the sound of machinery being wheeled in.
“Am I having a heart attack?”
“We’re just going to do a quick trace just to see what’s happening – just try to relax…”
Gown being lifted up – stickers being slapped on – cables being attached – reading done – blood pressure done – doctors confirm it’s not a heart attack – but it’s something – we just need to run a few more tests…
Every time – as I sat in that room on my own – wiling away the days between devouring Netflix and the odd brief conversation with the nurses as the popped in for more checks and the odd fleeting visitors. I found myself slipping into a place of loneliness – of fear – of overthinking.
Each new episode of chest pain and racing heart and alarms sounding, people rushing, machinery being wheeled in – I became fearful that any time this happens could be the very last time it happens…
I began to wonder did I just come this far – to just die?
I watched women double my age walk past my door in their dressing gowns and I felt angry that I was confined to the bed for what was the third week in a row.
I had reached a point where I had built up in my mind a constant fear – that at any point – my body could decide to just stop working. I didn’t know how to overcome the thoughts. IT was a constant racing of my mind 24/7.
The decision was made to allow me to walk – to try and monitor how well the heart and lung were coping under duress. The heart wasn’t compliant!
It was decided due to the fluid being drained – and the influenza outbreak becoming an issue – that I should be discharged home to see how I get on. The goal being the more physio I do – the stronger I will become. To begin with it was 3 walks per day for 5 minutes each. I haven’t gotten far beyond that because we’re still having trouble with the racing heart and waiting on a review to decide how best to handle it going forward.
On discharge day – the drain was to be removed. My lovely nurse came in – told me to lie on my side – and she went to remove the drain tube from my back with the assistance of another nurse. This tube that had caused so much pain – just to take a simple breath.
“Oh no – that’s a big deal” she said
Immediately I tense on the bed – anxiety taking hold. “Will it be ok?” I query
“Oh I don’t know we’ll have to get X to look at it – I’m not sure” she replied
“Can I have a Xanax?” I ask – dizzy with anxiety that this drain removal is going to cause all sorts of complications
“An Oxynorm might be wise too” she says
“I don’t want morphine” I reply
“Ok Claire we’ll get your Xanax sweetheart”
Off her assistant goes and comes back with a Xanax and another nurse
“Oh I haven’t removed one of these in a loooong time – that’s a pigs tail drain” says new nurse
“So what do we do?” says first nurse
“I think get X to have a look” says new nurse – off she goes and in returns herself and two other nurses
Two new accomplices agree they aren’t comfortable touching it – all the while I’m lying on the bed – wishing that this conversation wasn’t happening in earshot – my whole body is rigid with tension
“I think we’ll have to call X in” suggests first nurse
As I lay there she goes off and returns with the surgeon – who asks if I’ve taken the Oxynorm. I say I haven’t. He recommends that I do because this is going to hurt “like a motherfucker” as he so quaintly put it. I remind him the Oxy interferes with my heart rate – to which he replies pant breath like you’re in the middle of contractions – and half the crowd behind me begin to pant breathe to show me what he means – I join the choir of “panters” and together we pant while he cuts the tubing lose – I feel something ungodly move right inside me next to my lung that sends a shooting pain toward my chest and then it recoils – my choir of panters keep panting while I add a “FFFFFFUUUUUCCCK” to the mix…
IT’s not out yet that’s just cutting the pigs tail loose – he says
I join back in with the panting choir as one moves to the front and bravely offers a hand for me to crush. I grip it and I can tell he’s bracing himself as much as I am as his hand tightens around mine…
READY? HERE WE GO! And with an almighty tug and a pain that brought me to the point of passing out he pulled the pigs tail from my lung cavity and I crushed my nurses hand – followed by rounds of ” Now Claire – all done – are you feeling ok?”
Followed by – “What time is your lift home arriving?” As I lay there hardly able to take a breath with the pain rippling through me; “Soon” I replied…
I’ve been home a little over a week – I’ve had a couple of episodes of heart racing since returning home – each a little more terrifying. The place you really want to be when this stuff is going down is the hospital.
I’m a decent patient. But I am a diabolical person during recovery. It can never happen fast enough. I always want to achieve more… The last couple of days have been particularly frustrating. MY energy levels are creeping back but I still cannot move around as I want to. I know these things take time. But. I never learned to cope while sitting still…
For every outlandish, outrageous barrier that I’ve encountered in my adult life – my default is to always keep busy. Throw myself into work, into activism, into my volunteer work, into anything at all that means I don’t have to take the time to sit down and reminisce and dwell – allowing the things to tear me down, because so much has happened in my lifetime – that to have the time to sit and think and let it wash over me – to work through the emotions – could quite possible destroy me. I don’t know how one “deals” with the magnitude of things that have happened in my life – so I keep busy. IT worked – I experienced zero depression – anxiety over things that one should and would be generally anxious about.
But this… new sitting and feeling guilty for not being able to be a proper parent yet – having my own parents do what should be my job. Having people I love, run around after me, shopping, changing dressings, helping me dress, helping me shower, the simple things that one takes for granted. It is excruciating – for me. It hurts me to the very core of my being that I am putting this pressure onto others.
The loneliness of the anxiety swallows me up as I sit at home day after day – trying to build up my strength enough so I can do something as simple as cook a meal for myself. while trying to battle the fear and find new ways to navigate the stress while I cannot be physically busy…
I have reached out to a number of friends whom I know battle with mental health issues – and have asked for their advice – asked them how they manage their anxiety – how do they cope?
I appreciate the honesty, the suggestions and opening up to me in the ways that you have – it has helped me more than you know. It is becoming less as the days go by…
Then I remembered what I always did when I was overwhelmed. I wrote. Didn’t have to make sense. It could just be a ramble – like this. In ways – weaving words from my mind to form some semblance of sentences on a page – has always been a therapeutic experience for me.
When I started out on this journey – with the ultimate goal of life saving surgery to avoid the necessity for a heart and lung transplant – my biggest fear was being put asleep and not waking up. I hadn’t thought beyond that. The mental preparation I had to do to get that far – was phenomenal – with the help of people who are now very dear to me and always will be. I didn’t think that less than a couple of weeks after surgery that I would be fighting to live again…
When I sit back and analyse it – I rationalise by telling myself – why the fuck wouldn’t you be anxious? That’s a lot for a mind and body to cope with in such a short space of time.
I remind myself that I need to be kinder to myself.
I remind myself that we need to be kinder to each other.
As a very close friend said to me a few days ago – “you can keep looking at your heart beat or you can get up and enjoy lunch with friends – you can keep worrying that your body is going to have an episode any minute or you could spend your time watching a decent movie…” so on and so forth until I found myself thinking – actually – yes. Every minute I’m worrying about dying – is every minute I’m wasting time that I could be living
While I try to remind myself of that as each new day arrives and I find myself alone with my thoughts for prolonged periods of time. I realise that these things take time.
Until I reach my goal of full physical independence again – I’m just going to have to tend to my “mind garden” and find a way to cope, while sitting still…