It starts much like it has on many other occasions. A dry throat, a sniff of things to come. Then comes the deluge. Handkerchief after handkerchief consigned to the whites wash, saturated with the runnings of what feels like two hundred nostrils rather than the traditional two. The sneezing, hawking, burbling, coughing. The thickening. It’s just a cold.
The timing isn’t ideal. It’s Saturday and my wife and kids are leaving on Monday morning for a well earned week in Majorca. This is the third year we’ve done this; my living in a wheelchair makes holidays abroad difficult in the extreme, and we’ve agreed not to let that stop them from enjoying time in the sun. The partings for these occasions are always tough, and the weeks hard going mentally. But I am in safe hands; for the third year in a row my parents are bunking with me for the week. And at the end of it, there’s always the joy of surprising them by picking them up at the airport. The kids in particular always find this a novelty despite the fact I’ve done it every year.
There will be no pickup this time.
On Monday, having slept poorly through constant coughing, I wake to find my family on Flight Tracker, the carers arrive to help me out of bed, and a fairly normal day ensues. A low burble still rumbles in my chest but I assume it’ll work its way up enough for me to expel it, as had happened the previous year. I sleep fitfully that night, and on Tuesday have next to no puff for anything. I observe a distinct lack of muscle tone when the carers dress me, looking at my chest and abdomen with an impression of looseness and rubber movement. I eat a decent lunch but immediately after feel faint and breathless. I return to bed at 2pm, switch on the ventilator which I use normally only during sleep, and wait for the expected coughing fit which doesn’t arrive. Tuesday night is even worse; zero sleep and on Wednesday my parents phone the GP for a home visit.
My GP arrives within two hours and after a discussion and examination, states she’s referring me to the Acute Receiving Unit at the Queen Elizabeth University Hospital for immediate assessment. The journey there and the next 24 hours are jumbled in my mind, but as it turns out there is a good reason for that. A chest X- ray shows my lower left lung has collapsed as a result of mucus filled blocked airways. It’s shrivelled like a puckered, punctured balloon; for an unknown amount of time I have been living on one lung. One of the long term complications with motor neurone disease is weakness of the respiratory muscles – indeed, this is in most cases how people with the disease lose their lives. There is an added problem however which I haven’t fully appreciated till now. Respiratory muscle weakness also reduces the effective strength of coughing. And this inability to clear my chest has compromised my left lung.
In the ARU, things are initially positive. My parents leave and return home. But as the night wears on, it’s clear things are going to be touch and go. The ARU doctor explains the therapy – saline nebuliser to break up the mucus plugs, followed by the use of a cough assist machine and aggressive physiotherapy to try and begin clearing the blocked airways. The first five attempts at this don’t achieve anything, despite the feeling of thick gloop moving around in my chest. At this point the ARU doctor explains they are considering a move to intensive care and ventilating me via tracheostomy. Various options are explained, all of which involve risk and potentially huge changes to the level of care needed post-op, including losing my voice and my life at home. I can’t process this. With the alarm monitors for heart rate, blood oxygen saturation and respiration rate chiming away at various levels of urgency beside me, the clock is ticking. I resolve to continue with the therapy, seeing no other choice before a decision is made for me. On the seventh attempt, I cough up a gobbet of thick, evil looking green sputum about two inches long. I flob it out onto a tissue, make a lame Blackadder joke about a nugget of purest green, and burst into tears. Behind me, the blood oxygen saturation alarm stops.
After the tenth attempt, the physio decides to call a halt. To continue would be to exhaust my already overworked respiratory muscles, and potentially make things worse. So I’m made comfortable and settled for the night. But again, sleep doesn’t come. My mind is overcome with fear that I might not see my wife and children again, who are three days into their holiday and oblivious. I’m still determined to be home before they return without disrupting them; after their return I can discuss with my wife what’s happened and how we can mitigate it in future. This is all addled wishful thinking. The proximity to intensive care though has lit a flare in my brain which won’t be easily put out.
Thursday begins with a visit from my respiratory consultant to the ARU. Initially he’s pleased enough with my progress to move me from ARU to a respiratory ward. The physios are draining more plugs of sputum from my chest and my vital signs are improving. All good news – which is blown away in a single conversation seven hours later. One thing I haven’t picked up on is the way in which the respiratory team observe you while interacting with you. And they’ve all seen that the left side of my chest is flat and devoid of movement. My left lung keeps plugging up. The consultant details the options, ranging from transfer to the high dependency unit, to preparing for the reality that death is possibly not far away, and what can be done to ease my passing if so. My parents and sister are in the room for this conversation. It is all shockingly abrupt and surreal. Yet again my ability to think clearly is stymied, normal thought processes derailed by a storm of adrenaline and the suffocating cloud of oxygen deprivation. “I’m not ready to go yet.” It feels very cliched, with a whiff of bravado about it. What else can I say? I simply don’t.
A few things are decided. I will be transferred to the high dependency unit and all agree it’s time to call my family. It is time for them to come home. I am wracked with guilt at this, and also terrified at the thought that I might not survive until I see them. The thought of not being able to say goodbye is horrible, unmanning. At the same time I don’t want them to see me like this, an almost ruined thing stranded in bed masked and cabled to monitors as if there’s something seriously wrong with me. Only when I am wheeled past the sign directing us to the Critical Care Unit do I finally start to give in to the fact that there is.
My family return the next day and the reunion is a release of emotion. My eleven year old daughter is raw in the eyes, overpowering hugs fused with tears; my eight year old son a confused and concerned face, uncertain but looking to help. My wife and I get our time later behind the thin comfort of the curtains, keeping our counsel for each other as we always have. Reality is here and now, life or death.
A week passes. Seven days of nebulising, coughing, machine assisted expectoration. A blur of faces in physiotherapist tunics. Long hours spent looking around the high dependency unit, at the lone tree outside the only window I can see. Living by the rhythm of others, be it the other patients, the staff handovers, the nurses. Unable to move because MND has decided I shouldn’t. Unable to breathe unassisted, because MND has weakened me to the point where my lungs can fill with fluid and I can’t empty them. Maybe it’s inevitable, maybe this is it. Have I had enough of living like this? I’ve seen my family. Can I let go now?
I can’t. My family are there every day. My parents. Friends, old and new. No more motivation is needed. I’m not ready to go yet. A transfer back to the respiratory ward is the first positive affirmation that my body is in tune with my mind – for now, at least. My lungs are clearing, sucked clean of sputum by the NIPPY Clearway machine. This assists my cough by fully inflating the lungs then exerting a powerful pressure pull to help shift stubborn mucus. The process of weaning from the ventilator, which has been clamped to my face for nearly two weeks like Giger’s facehugger, begins. It’s tough going, lungs aching for air but being sold short by the diaphragm which, already weakened by MND, has gotten used to being propped up by the ventilator. Never before have I been so aware of my breathing and everything the body does to facilitate it, from trunk to shoulders. At times I look at the plastic mask with real hatred and at other times with fearful longing. Ventilation is life. I just want to do it on my own for a little longer.
A diary of ventilator use shows my level of daily dependence is dropping off. Another week passes and the conversations turn towards discharge. I’ve crawled through the tunnel dragging my useless legs behind me and made it to the sunlight at the other end before somehow standing up. But it does feel like I’ve only taken a couple of steps before an express train has roared past and into the darkness, rocking me with the turbulence of its passing. I missed it but not by much. And in the distance I can see another tunnel; I don’t know how long I’ll get to walk in the sunshine. The trains on this track are regular and they don’t stop.
Leaving the ward is strangely emotional. A couple of the nurses embrace me and I’m surprisingly close to being overcome. A 6ft 3 (when fully stretched out anyway, I haven’t stood up for over 6 years) grizzled bruiser with a peppering of grey in the beard and hair reduced to fighting back the tears. They are genuinely happy to see me going home. I feel like I’ve gone to war with them and only made it out of the trenches by standing on their shoulders. That’s the NHS for you.
Being mobile in the wheelchair is almost a pleasant novelty; I can see everything behind my bed on the wall for the first time including my “What’s important to me” whiteboard. There are three sketches of a dog (Dexter, my god, how will you react when I return?) and three names: Kim, Kate, and Rory.
For now the sun shines. I’ll walk awhile and enjoy what can be enjoyed.
chockeyboy 