Monday, April 09, 2007

Happy Easter everyone! My second blood tests at Harefield were fine (yay) and I got my phone back (bigger yay). I hope you have all had a lovely weekend, my favourite moment was the traditional Easter egg hunt, in which my grandma hides little Easter eggs for us “children” to go and find (a tradition I will never grow out of). Last year mine were all hidden on the patio to ensure that with my mums carrying the oxygen I could slowly make my way round and find them all myself. This year however they were hidden all over the garden…just like everyone else’s.

By the end of January I was pretty much fully awake and aware of my surroundings…and it was tough. Extremely tough. I found myself in the unenviable situation of not only not being able to breathe (I was still on the ventilator just via a tracheotomy now) but now I was unable to talk or move, in fact unable to do anything myself. At first my mind was still strong and determined, I remember asking to go for a walk very early on and my poor physio had to try and gently suggest attempting to sit up might be a better place to start without crushing my hopes. I have the patience of a shrew therefore would try and do things – such as tuck my hair behind my ear – myself and inevitably get extremely frustrated when I found I couldn’t even lift my arm and reach my own head. I would envisage doing things with ease, but then on attempt be surprised to discover it was near impossible to do on my own; my first try at sitting up on my own took two physios and a nurse to manoeuvre me into an upright position (I had lost my sense of balance from being flat on my back for so long) and I managed to hold my head up for 30 seconds before feeling myself slump slowly sideways back towards the solid reliability of the bed.

This inability to do anything (which was caused by the abnormally long time I was sedated so anyone waiting for transplant please don’t focus on this) made the days drag excruciatingly, and I would watch the second hand move round and round the clock. ICU have extremely strict visiting hours so I would wait for 10 o clock to come, and then focus on the door, waiting for the shadow of my mother to appear behind the frosted glass. I am a very tactile person, and took great pleasure in having my feet washed or cream rubbed into them, and having my face wiped with a cold cloth. The only ways of communication I had were to mouth things, or more commonly resort to a weak and spider-like scribble to express my needs. During much of this time, I tried to rely on my imagination and memory to take me away from the room with 15 different machines, monitors and drips, all bleeping intermittently in a discordant and jarring fashion.

It was around this time that we decided I should open my suitcase which had been packed for 2 years, as I may need the contents, only to discover the most inappropriate packing Harefield has probably ever seen. In case you cannot make it out in the photo, the contents include an eye mask, pink fluffy jewellery box, fairy lights and a cuddly lion, all essentials to one’s recovery in intensive care. I had been intelligent enough to pack pyjamas, and these were ones I had purchased specially and placed in the case knowing I would either wear them with new lungs, or not at all. Due to complete uselessness of said case, my mum was sent off to the local shops to purchase such items as a toothbrush, toothpaste, body wash and shampoo.

Things continued to improve health-wise in a very slow, two steps forward and one step back fashion. I was continuously told “you’re doing so well!” which didn’t help when I felt anything but well, and in some of those early days I had urges to bite some of the cheeriest nurses and staple things to their head. Each day something would go a bit awry. With a potassium level dropping, or a blood pressure reading jumping, resulting in an endless and constant juggling of medications and treatments. Because I had been ventilated for so long it was no longer possible to just switch off the support and have me breathe unaided as my muscles had wasted too much. Instead, the ventilator was being weaned, slowly in order to build up my tolerance to less support day by day, and consequently each day felt like a work-out as my lungs struggled to adapt and attain the new higher level of effort required.

Monday 29th was quite a monumental day as I stood for the first time. Not unaided – it was using a device called a tilt table, which eerily reminded me a little of a coffin. They slid me onto the board-like base from my bed, strapped me to it, and then raised the sides and the footplate before slowly tilting me, allowing me to get used to the new position before tilting me a bit more, until I was in an upright position. The original aim was 2 minutes, I refused to come off it and stood for 7. It was oddly unnerving being upright but I loved it, as it was just different from my usual flat on my back position, and made the room seem different too. Later on that day I was put back on dialysis as my limbs were still very puffy, and a tablet which caused my heart rate to drop to low levels we had never before seen. I was still having problems absorbing and was being constantly sick – a side affect from the Tazocin which they stopped in an attempt to get some nutrients into me.

On Thursday 1st Feb, my mum was sitting nattering away by my bedside when the ventilator started alarming. Suddenly everyone came running and I found the breaths coming in weird short bursts. They were moving very fast, but seemed very calm as they explained to me the ventilator had broken and they were getting another one. A nurse looked me steadily in the eye and talked me through everything, as he placed what looked like a large green balloon on the end of my trachy and told me to breathe calmly and slowly. I was scared that my lungs might not cope, but at the same time was enjoying the freedom of breathing unaided, and decided to try and focus on it as a good training exercise rather than a panicky problem. The new ventilator was in place in minutes, and I was reattached. Rather than causing new panic, that episode actually gave me a tiny burst of confidence; the machine had failed me but I had breathed unaided, my sats hadn’t dropped, and there were no ill affects. Sometimes you need a push to believe that you can.


Anonymous said...

Happy Easter to You and yours.

Have been away fro the last week so just catching up with your life via your blog. Your story is really quite amazing. Wishing you all the best. xx

Anonymous said...

*for I so hate typos!

Anonymous said...

Wow, I don't even miss watching Holby City because it is on choir practice night now I have your graphic narrative of real-life ICU dramas. Also great encouragement to go and use my own perfectly-adequate-but-generally-underused lungs for singing.

Take care, Philippa xxx

Anonymous said...

Happy Easter Em, Glad the bloods have come back ok...
Hope you have been enjoying this wonderful weather....
(Cant wait for the next installment of your story)

xx Sandy xx

Anonymous said...

Happy Easter! Sounds like a fun weekend you've had! :)

Thank you for the latest installment ;) It's good to know that even when things didn't go quite to plan (ie. the ventilator broke!) something good came out of it :) You're right about needing a push every now and then (although you've had quite a few hefty pushes over the last few months!) as they can indeed put things into perspective and boost your confidence!

Looking forward to fidning out what happened next!
Love always, Kat xxx

Jayne said...

Fairy lights????

After reading that bit, I lost concentration and thought of nurses going into your case to retrieve your belongings and untangling a pile of fairy lights.

I'm lost for words, but I hope you had a good Easter and found all your eggs... I hope they weren't bunnies.....


Anonymous said...

Wanted to send you a note to wish you a happy Easter, Emily, but no internet connection from home so couldn't. Belated good wishes. The best bit of all is that you could wander around the garden gathering your eggs - I am sure that gave you a great thrill.

You last two blogs are pretty horrific, you must have been terrified but you hung on and just look at you now. And forever thoughtful, trying not to frighten those waiting by mentioning the heavy sedation as being the reason for your inability to move.I hope that once you've written about your experiences they will fade in your mind and let you enjoy peace, quiet and excellent health for a change.
lots of hugs, J.

Anonymous said...

Hi Emily,another great part of your story its so amazing to read all you went through and what your thoughts were when you couldn't speak.Also how the simple things in life (after such a major experience) make us happy like the ability for you to go easter egg hunting around the garden I hope you found loads and I bet it swelled your grandmas heart with pride to watch you .Once again laughter and tears at the same time when reading your blogg.Your a star!!!love Annex

Anonymous said...

Hi Em,
So glad you had a good Easter and managed the egg hunt - bet your grandparents were thrilled watching you.
Really fasinating reading your account of events - what a roller coaster for you and all your family. You are looking so good now - keep up the exercise and eating!! Easter eggs probably helping!! Hope to see you soon.
Love Julia

Anonymous said...

Emily, amazing story, continue.


Anonymous said...

Hi Emily,

So glad to hear you had a happy easter and were able to hunt for your eggs unaided this year!

I'm waiting for transplant assessment myself at the moment and your blog is such an inspiration. I tried to email you on an old address i had for you but I don't think you got it. If you wouldn't mind talking to me a bit about transplant I'd really appreicate it, my email is on my cf forum profile.
In case you don't remember me, I sent you the sparkly lungs card while you were in hospital!
All my love
Tor xxxx

Jac said...

Like Jayne, I really have to just say: Fairy lights???!! I can just see you lying in ITU hooked up to 20 monitors, with your eye mask on and a string of pink fairy lights round the bed. Not sure what the doctors would make of that ;-)

Glad the bloods were ok!

Love and higs
Jac xx

Anonymous said...

Wow such an expidition!!!!! Bet u felt like you climbed Mount Everest!!

Cant wait to read your book!!!!!! 1 day..........:D

Take care ((hugz))) Elaine Rach & family xxxx