Wednesday, May 09, 2007

Bit of a long entry here, sorry about that...but it is the end of my Harefield journey! Clearly not the end of the story though, as a whole new chapter in my life has now started, one I could only dream of being lucky enough to have.

Life on the ward was vastly different from the Intensive Care Unit. The atmosphere there was one I was much more accustomed to, of a more general ward with constant comings and goings of staff, but essentially a lot more privacy and also responsibility for me as a patient. I was still attached to the bi-pap via my trachi, but was able to spend increasingly longer periods on just oxygen, which was given via a high flow mask directly into the trachi. After a few days on the ward, I tried nasal specs for a short time, which was another huge step for me, as I was accustomed to wearing them and had been for the previous to years, so this felt to me like a move towards normality. My family were able to all come into the room (it’s two at a time in ICU) and we were together the five of us for the first time in months.

I would still await eagerly for the physio to come and take me out, and as I was spending more and more time off the machine, I was pushed to walk increasingly further along the corridor, with two physios in tow, one supporting my arm (I was still incredibly unsteady on my feet) and the other pushing a wheelchair so that when I became too exhausted they could push me back to the room. There was a white circle on the floor of the corridor, and I was informed that this is where people aimed to get to, and would then be made to do a little dance of celebration once they had achieved this distance. Having been told this I instantly decided I would reach it by the end of the week, and did so, triumphantly, my wobbly legs only allowing a short wiggle of a dance before I sat hurridly down in the wheelchair with a bump.

By now I was eating fairly normal foods, although everything still had to be soft and moist, as the trachi meant swallowing was still difficult. My family began to bring in bits and pieces of food for me – my grandma made a vegetable soup and drove it up, the cook at A’s work would prepare me little lunchboxes with a variety of salads and fresh foods – the home cooked taste was indescribably luxurious and helped increase my appetite and eagerness to eat.

My confidence increased with my progress, and I would try and stretch myself a little, by getting out of bed myself (a long and laborious procedure but I learned little tricks like rolling onto my side first before attempting to move to an upright position) and brushing my own hair. I was attempting to move back to the bed, a nurse next to me to ensure I didn’t slip, when I began to feel funny. Assuming it was a panic attack (which I hadn’t had for a while now) I told the nurse I needed something to calm me down and that I was struggling to breathe. Before I knew it another nurse was in the room, he’d been watching the monitors outside and my heart rate had spun out of control. As the two of them moved me back to the bed, I lost consciousness. I came round to find about 7 people in the room, attacking me from all sides, and the bagging mask on my face. Apparently I had passed out and my CO2 and jumped through the roof. Whilst they attempted to get an arterial line back in the doctor had bagged me, and as soon as she did I began to regain consciousness. I lay there, my eyes refocusing slowly and heard the doctor say “sorry I called you back, I thought we were going to have to shock her”. I glanced sideways to see the crash trolley primed next to me.

My mum had been called and arrived about 20 minutes later. Weirdly, in spite of what I (and everyone else) feared, this episode didn’t knock my confidence as much as it should have. The team investigated everything they possibly could, and several different specialists came to see me, but it was decided that this was probably (and hopefully) a one off weird reaction, and that it wouldn’t happen again. With this evaluation of events, I narrowly escaped returning to ICU for closer monitoring, and decided to try and continue moving forward as quickly as possible, to prove to them all that this was a mere blip in my recovery and I was actually still progressing nicely.

In spite of early hopes that I would be well enough to attend Laughter for Life, March 4th loomed and it became obvious I would not be up to it. As upset as I was (we had worked long and hard on this and I wanted to see the fruits of my labour, let alone meet Bill Bailey and Dara O’Briain!) I knew how lucky I was because at least the reason I was missing it was due to my newly instated working lungs. Adam’s sister came and sat with me for the whole evening, we watched Will and Grace and munched on a takeaway and had really quite a pleasant evening. After the show was over, Bill Bailey phoned me to let me know it had gone fantastically well and that it was one of the best charity gigs he had ever been involved in (due to still only being in the early stages of relearning to speak I managed not to squeal down the phone at him).

On the 5th March, it was decided that I had managed to spend enough time on oxygen alone to warrant a sleep study minus the bi-pap. I was slightly nervous but by now was enjoying the feeling of breathing unaided, even though it was still slightly hard work, and was much more confident in my new lung’s abilities. The following morning, the team strode into the room. “Well your numbers look fine, let’s get that trachi out shall we?” the doctor said, rolling up his sleeves. I immediately panicked at the idea of this new change in the amount of support I was receiving¸ but the SHO reminded me gently that they wouldn’t do anything they weren’t convinced I was ready for. So the neck collar and the fastenings were loosened, I was instructed “big cough”…and out it came. As I breathed in I could feel the air whistling through the hole in my neck (not particularly pleasant but not painful at all) but they stuck a plaster on, informing me that the hole would heal itself within a week or so. As we sat waiting for me to become accustomed to the lack of tube protruding from my throat, the doctor glanced at the monitor. “Your sats are good, 98%...ok let’s loose that oxygen shall we? And the NG tube whilst we’re at it.” The NG tube was removed, making me cough a little, and then my nasal specs were taken away from me.

I felt almost naked, that there was something essential missing, I suspect you would feel something similar if you went out without shoes on or something. I had been wearing oxygen full time for 2 years by then, and over night since 2003, so suddenly having no tubes at all felt incredibly weird. After about 5 minutes I tried to suggest that perhaps I did need it for a little longer and would they please give it back, but the doctor merely laughed and replied that I no longer needed it…my lungs were working. Once the team had left, I got off the bed and wandered slowly round the room. No tubing to hold onto and to watch that I wasn’t pulling too far or to tangle round the bed, just freedom to move. That evening my sisters arrived and saw me tubless for the first time in years. They instantly clambered on the bed with me, able to get close to me without wires and oxygen getting in the way.

The following Thursday marked the birthday of a rather special mummy, and all she wanted was for the whole family to be together. We discussed the idea of all getting a takeaway and squeezing into my room, but it was clear this would be a)near impossible and b)require great skill as people would have to stand up balancing their plate and another dish as there was virtually no surface space either. As we talked through the options, I toyed with the idea of leaving the hospital. I was terrified at the thought, I hadn’t yet left the hospital grounds, and the idea of being further than arms reach from a nurse was not a comfortable thought. However my mummy’s special day overrode my fears, and I cautiously agreed to accompany them all to a restaurant. We took two cars, incase I needed to return quickly, and sped off to a small Indian restaurant in the village. As we drove out of the gates my stomach flipped over. I was setting off with no oxygen, away from medical intervention, to have my very first independent experience with my new lungs. I was still lying down for the majority of the time so sitting up in the restaurant was hard work. The meal was lovely, my mother was beaming from ear to ear, and we all toasted to my first attempt at freedom.

The next week, the team strode in as usual to ask their usual questions and perform their usual tests. A and I sat there half listening, half continuing to chat when the main consultant said “well things are looking really good. Best possible outcome judging on today; discharge next week.” Stunned I muttered something along the lines of thank you, and they swept out the room closing the door behind them and leaving A and I to say in unison “oh my GOD!”. I phoned my mother immediately who became somewhat hysterical and even louder than usual. It had gone from looking like I would be in for months and months to suddenly talking about me being at home, full time, with my new lungs.

On Friday 16th March, my mother arrived at Harefield and entered my room for the last time. Two HCA’s had been in all morning, painstakingly removing my cards one by one from the walls, and helping me gather my mess into relatively organized piles to transport back home. We attempted to act as though this were a normal visit, both of us secretly afraid to say anything about home incase someone came in and suddenly told us there had been a change of plans. As my mother took the final bags to the car, I began my final slow amble down the corridor, hugging various nurses and promising to take good care of myself. I pushed the door open and the cool breeze hit me hard as I stepped outside. The car pulled up and I slowly eased myself in and fastened my belt. As we started moving forward my mum looked at me, grinning manically. We drove through the gates, shrieking, a cross between laughter and tears; the initial part of this journey was over, and life with my new lungs and a wealth of opportunities, experiences, triumphs and challenges was about to begin.


Anonymous said...

Oh Emily, I am both laughing and crying as I read the latest and last hospital episode. I can really FEEL THE EXCITEMENT that you must all have gone through. Thanks for such a succinct description of everything. The feeling of stepping out of the hospital unaided and unattached must have been incredible.
Keep it up girl..........

Lorraine said...

OMG - pass the tissues! A whole new beginning - don't waste a single precious second of it - EVER. Much love, xx

Sarah Milne said...

Fantastic story Em, you really should write this into a biography. I am so so happy for you and am telline everyone I know, and loads more I don't know on forums, to read your blog. You have inspired SO many people and will keep on doing so with those new blowers.
loads of love
Sarah x x x

Anonymous said...

Wonderful, wonderful, wonderful!

Anonymous said...

All I will say is...WOOOOOHOOOOO! :D


Mad Asthmatic said...

It really has been awe inspiring reading the story so far. I have cried and laughed along the way and I so hope that you keep us updated as you move forward with those new lungs facing new challenges and overcoming them with your normal zeal and zest for life.

Sarah Milne said...

I'm sitting here in floods of tears after seeing you on Watchdog!!! How fantastic :-) :-)You look great. Can't wait to see you at the Hydro Active, if now before.
Sarah x x x

Mad Asthmatic said...

just seen you on watchdog - you looked fab!!!!

Sarah Milne said...

If now before should, obviously, be if not before! x x x

Anonymous said...

Just saw you on Watchdog, looking fabulously healthy and smiley! :D xxx

Anonymous said...


I'm one of the people told to read your blog after I watched Watchdog. You're an inspiration to so many. The very best wishes to you ...go get your future.Stano

Emmie said...

Very emotional! Off to watch the recording of you on the telly now! xxxx

Anonymous said...

Emily I can hardly see what I'm typing for tears but not sad ones there happy tears for how brave you've been and for your new life .I have only one thing left to say ...When's the book out !!!!! can't wait to read it !!!!love and good wishes Annexxx

Anonymous said...

Emily this is so moving, so wonderful, you've done so well, (if you ever write a book remind me to stock up on tissues). Go you. Here's to your new begining. Lots of love xx

Anonymous said...

Sooo brilliant. Such a rollarcoaster but now you are free. Enjoy every moment!
Lizzie xxxx

Anonymous said...

That was such a great entry. I can only bigin to understand what u must have gone through, but by the sounds of it it must have all been worth it, just to be able to have no tubes coming out of u.
Keep going nd live life to the full - now that you really can. You have gone through an amazing journey - now just enjoy it!
Jennie Higgins

Fi said...

Crikey Em, what a rollercoaster ride... Glad you're riding high at the moment, what a great feeling!

Anonymous said...

Emily, Thank You so much for the story. It has inspired me to no end.

Thanks again, Love, Randall

Anonymous said...

Aw Emily... you never fail to bring a tear to my eye! Wishing you the very best of everything you've ever wanted - you deserve it. Thanks for sharing your story. Perdita x