A favourite quote and a way by which to approach life.

Today is the tomorrow that you worried about yesterday.

Sunday, 28 July 2013

Heart of the matter

I'd dozed. It hadn't felt like long, but on waking I couldn't breathe. My lungs had clamped shut. I rang the nurse call bell, she came, I gasped my need for a nebuliser, she said okay, and she left the room. I waited. I gasped. I waited. I rang the bell again. Still nothing. I could feel myself suffocating, and I knew that the staff here didn't know quite how quickly and dramatically my lungs could seize up. The bell rang on, and the nurses passed by the room busily trying to see to each of their patients, not deliberately ignoring me, but not having time to see that i was getting into trouble. I banged something on the table. I can't remember what, perhaps it was a spoon or a cup. It didn't matter, I just needed to make a noise, attract their attention, be given a nebuliser. She came again, surprised that I was gasping so hard after seemingly such a short period of time. I had a nebuliser, and then another, and I felt whoozy, and drifty, and drunk, and unwell.

Another nurse, concern splashed all over her face, trotting this way and that to get meds, get masks, get medics.

Time didn't exist. I have no idea how long this was happening, and I hardly felt like I existed, let alone the abstract of time.

Then doctors, several doctors, and a Sister from the ITU Outreach Team.
'Am I really that ill already?' I think, and close my eyes for a rest. I'd like them all to go away, let me sleep, nestle into the fog in my brain. The doctor wanted to do my blood gasses, and the Sister kept telling me to open my eyes, so I handed over my wrist and let myself be stabbed, too tired to feel any pain.

'She's well known to ITU,' says the Outreach Sister.  'Very severe and often brittle asthma.'

Please, just let me rest. You're all very noisy, I hurt, and I'm sick of being prodded and poked. But as I turn to my right to try to ease some of the pain in my tummy, the doctor leans over from my left and tells me my blood gasses are back and they're not good.

'What are they?' I gasp,
'No, my pCO2,' I correct,  thinking that he's telling me an alkaline pH.
'Yes, your pCO2 is 7.5. Your pH is 7.2.' Worry hangs around his words.
The information seeps in, nuzzling it's way through the brain fog, until it bumps into a small area of consciousness. 'Oh...' Oh, indeed. They are not good numbers. 7.5? My pCO2 is 7.5?! That's a bit of a worry. But I think it rather too rationally, and it's almost as though it's happening to a different me, a not-me.

And we're off! Someone is worried that I'm going to die. Suddenly I am too. I watch the corridors skid around me, hear voices running behind, and feet tapping quickly on the lino beside me. Places I recognise slip by and beyond, we take the lift to level three, they roll me through the empty third floor corridors in haste, following signs for 'Burns Unit','Theatres', 'Intensive Care Units.' A scoot to the left, through the controlled double doors with the swipe of a card, twisted around the bends in the vestibule, arriving in the unit, lain flat, slid on to the most comfortable bed in the world that moves underneath me and massages my tired and pained body. I cry. I am afraid. I don't want this, didn't expect this. I came here with a sore tummy, not my asthma. I should be able to breathe. What's happening?

The mask is strapped to my face, forever blowing air into me, keeping me breathing, bursting the bridge of my nose because it's a little too tight. The doctor takes my left wrist, tapes my hand to the bed frame with it resting over a bag of 0.9% saline, and guides a long wire into and up the artery in my wrist. It is secured in place, bloods are taken from the line, and my hand is released from the captivity of the bed frame, but the wire is left inside to perpetually measure my blood pressure. My readings blink in red and green and yellow on the screen above my bed.

At the same time, someone else has been fumbling with my other hand,  and arm, and foot, and at last they've managed to get another needle into a vein. I am hooked up to fluids and antibiotics, and my portacath is recharged with another infusion of aminophylline. I ask if I'm turning into a machine, which is how it feels with all these wires and lines and lights and bleeps. Someone chuckles a soft no, and a reminder that I'm ITU. Oh yes, I remember now.

Prods and pokes, and, 'Does this still hurt?' I scream out, 'Yes!' and try to move his hand away from my tummy, but he presses again just to make sure. I yelp, he stops, he apologises, and all too soon he and others will be back to do the same again. Appendicitis, that's what they say. They can't operate because 'she won't survive the anaesthetic with lungs like this.' The surgeons insist, the medical doctors deny them access. The surgeons tell me there's no research for survival of appendicitis treated solely with antibiotics - surgery always follows. The medical doctors tell me they have prescribed multiple antibiotics and hope. I pray.

And then I begin to quiver. A kind of shiver, but I'm not cold. I shake as if in fear, and I am afraid, but it doesn't account for this movement. It gets worse. It takes over my body. I squirm, and wriggle, and shake, and I can see, but I  can't make sense of what I can see. My arms wave, my legs jump, my torso twists and writhes, and I cannot stop. The world is static, two dimensional, like a drawing on cardboard. I move my eyes and the image swivels, but it doesn't really change until I blink,  and then I get the next two-dimensional cardboard drawing that doesn't really look like the world. I feel myself being held on the bed, writhing under the grip of multiple hands and bodies. Alarms chime, voices utter words that make no sense, my eyes find those of the consultant in front of me. He speaks clearly, I see his words leave his mouth, and I see his compassion when I tell him I'm scared.
'What's happening? Make it stop,' I plead.
'We will,' he reassures me, then turns to his junior and asks, 'What do we know?'
He perches on the end of the long bench at the nurses' station, which suddenly feels to me like it's in the wrong place. My world is spinning, and twisting, and jerking, and disorienting me while my uncontrollable body tries to fling itself from the bed.

They look to me, study my scans, read my notes, check my blood results, over and over. The consultant has become a detective sifting through evidence, piecing together tge crime that he is witnessing my body inflict on itself.

'Calcium! Her calcium is low, too low. Her potassium and sodium too. This is heart failure with tetany.'

The juniors look unsure, the nurse I think is afraid, and I am filled with terror, not because of the words that are being spoken, but purely because of the physical experience. I am hot, exhausted, can't breathe, desperate to rest, unable really to comprehend the sight of the world around me, and I have no control over my body at all. It insists on flailing around the bed, like someone with a severe brain injury. 'Make it stop. Help me, please! I'm scared.'

The consultant stands at the end of the bed, his junior comes to be by my side. One of the hands that is holding me in place shifts their grasp to take my hand, and keeps it as steady as possible while the junior doctor injects calcium into the needle in my knuckle. My hand stings, my thumb goes warm, and a great heat swells in the middle of my body. It spreads like liquid fire through my insides, up into my chest, across my ribs, and fills me up. The twisting, jerking, writhing spasms ease to become twitches and flutters. The world starts to redevelop it's third dimension, and those around me look more human. I know now what I am seeing, where I am, and feel released from the grip of a deep and physical fear. A few final flicks and I'm free. My calcium stores have been replenished, whilst my potassium and sodium levels are being restored with intravenous infusions. My heart is still failing, and it will for a while, but they are already hopeful that it can be reversed.

I am exhausted. My body has assaulted itself, beaten itself to a pulp, and my mind is battered. I'm in shock. I cannot take in all that has happened since I went to my GP with a pain in my tummy. But I don't have time to rest and consider because I still cannot breathe, I am still in pain, and I still need to concentrate to stay alive. And as I lie in the bed gasping for breath, with the BiPAP mask permanently strapped tight to my face, my body begins to swell with fluid that my heart is unable to pump around my body. I grow. I almost feel myself expand day by day, and as I grow my skin stretches, tightens, prepares to split open with the tension, and it hurts. The weight of the fluid building up around my waist, my hips, my tummy, my chest is heavy and makes breathing even more difficult. I am drowning in myself, I think I will probably die, I hate that I am alone amongst a crowd of strangers, and I shuffle myself away to a corner of my mind that thinks about tummies and asthma and breathing, but doesn't think too much about dying in isolation.

I close my eyes, and try to comprehend all that has happened. I think of the cat and wish he were curled up on the bed with me here. Behind the confines of the BiPAP mask, I clear a space in my head and create an open, green space of calm in which to be alone - an escape from the strangers around me, the machines punctiring the air with perpetual alarms, and the extreme presence of Death lurking in the folds of my bed sheets.


Zim said...

What will not kill me, it will give me more power - it is old proverb. I wish You good day - greetings from hot Poland.

Dawn said...

Becky, I so want to be able to say something profound in response to your post.
I know I've said it before, but you have such a talent.... The way you're able to put into words how terrifying these horrendous experiences are.....

I'm so sorry that you've been so very poorly, yet again :( How are you now? Starting to feel better I hope?
I wish I lived closer to you. I'd like to come and sit with you, just to keep you company and be there whilst you're going through all this. Please know that you're in my thoughts, and if you ever need someone to chat/vent/talk to, then I'm here anytime (and I genuinely mean that, I've messaged you on facebook before so you can get hold of me that way or I'm more than happy to swap mobile numbers)
Huge hugs
Dawn xx

Teresa said...

Dear Becky
You write with such amazing clarity about the situations you find yourself in, I feel I am with you, and I wish I was, even if it was just to sit with you so you were not alone through all this.
I was the 'loiterer' on the EA300 Sirvivors who sent you a card when you were in hospital a couple of years ago. I
I hope you are starting to feel better.
Sending love, hugs, prayers and positive vibes your way.
Teresa x

Zim said...

Becky, I nominated Your blog to Liebster Blog Award: http://zycie-i-droga.blogspot.com/2013/08/liebster-blog-award.html

Don't worry Polish language on my blog, I have translator :)

tracy.rose@healthline.com said...

Hi Becky,

Healthline editors recently published their final list of the top asthma blogs on the web for 2013 and The Antics of a Brittle Asthmatic made the list. You can find the complete list at http://www.healthline.com/health-slideshow/best-asthma-blogs (in no particular order). We encourage you to share your newfound status as one of the best blogs on the web with your friends, family, & followers.

We also created a set of badges you can easily embed on your site & anywhere else you see fit:


Please let me know if you have any questions.


Warm Regards,

tracy.rose@healthline.com said...

Hi Becky,

Healthline has just released their list of Best Quit Smoking Apps for this year: http://www.healthline.com/health-slideshow/top-iphone-android-apps-quit-smoking. Much like your blog, these apps were thoughtfully chosen by our editorial team. They were also medically reviewed by our in-house team. As a winner of our Best Blogs this year, we thought that you might be interested in sharing this list with your audience in hopes that they will find some of these apps useful. Thanks again for creating a wonderful resource for the Asthma community!


Alex Sten
Healthline Team