I had the BEST weekend (mind you I seem to be starting the majority of my sentences with “I had the BEST…” recently).

A had clients to see/business to do up in Manchester, and for the first time, I was well enough to go with him. As we planned the weekend, scheduling in when he would be busy working and where I would go and what I would be doing, I began to get quite nervous; I haven’t been an independent adult before really, not since my first year at Uni anyway. In recent years I have always had people around me to help me and to accompany me, and have never really been anywhere I don’t know, as hypothetical problems would arise such as “what if I get into difficulty breathing or get tired? What if I run low on oxygen? How can I get back quickly if I am in unknown territory?” Due to these questions being fairly foreboding and unanswerable, I tended not to stray to far from familiar ground. Not to mention of course the mandatory “stay two hours from Harefield” rule which penned me in somewhat.

Anyway, I was most definitely scared of going, just a general fear of the unknown and of behaving in an adult fashion (something I am really not accustomed to doing). The drive of people I would see up there and things I would do however was enough to override this (along with A’s reassuring words of “don’t be silly you’ll be fine”) and we set off “oop North”. Our first stop was Liverpool. The first night we stayed at a beautiful Hotel, which overlooked the huge expanse of the local park, green as far as the eye could see and uninterrupted except for the odd early morning dog walker or jogger. The next day I joined my friend, an ex-flatmate of mine who knows me so well it’s annoying and who now studies in Liverpool. It was fantastic to get to actually see her life up there, what she is up to, meet her friends, go out to some of her local haunts…all things I never thought I would be able to do.

On the Saturday, I rejoined A, and we headed over (notice I use the word “over” instead of a geographical direction as I don’t have a clue where abouts I was in the country nor where I was headed) to Derbyshire, to visit my granddad, who is one of my heroes in life, and who incidentally is 91 and just got a mobile phone. It was an absolutely glorious day, the sun was shining and Derbyshire is just so picturesque. We sat basking in the warm sunlight and talking until late afternoon, when we set off back to Manchester for the final leg of our journey.

We stayed with A’s friend (I was last able to visit him over 4 years ago) and I was spoilt rotten and treated like a princess - two things which I am quite comfortable with. On the Sunday I was able to meet up with Mr Pimpdaddy of pimpthatsnack fame, and his lovely lady, both who have been incredibly supportive to me and the Live Life campaign (see people are just awesome, I know I say it all the time but it’s true). This meeting resulted in the taking of muchly photos near a tree which was adorned with paper flowers and butterflies (I liked the tree and insisted that all pictures be taken with it included.). they dropped me off on the main road, and I wandered back towards the flat. I hope no one was watching me because I may have looked like a madwoman; I was beaming from ear to ear and laughing to myself, just the sheer overwhelming pleasure of being alive and being able to have all these experiences. Life isn’t about the huge stuff you know, major aims, aspirations, ambitions…those are important of course but it’s all the little bits, the moments which are happening right here, right now, that make it what it is.

After a truly spectacular weekend, it’s back down to earth with a bit of a bump today as my lung function, which has been beautifully behaved so far developed a mischievous streak and dropped by over 10% today. Dutifully, I telephoned Harefield and have been asked to come up tomorrow to be checked out.

After a thoroughly busy week last week where I was hardly home at all, I have decided that this week should be a little less hectic. It’s just I am so eager to take up every opportunity that wasn’t open to me before and drinking it all up thirstily. I also have a slight fear deep down that this is all going to be snatched away from me; I have had well periods before, but they would always just be a temporary thing before the next decline. I am still having trouble getting my head round the idea that things are going to improve not get worse! I am running on the automatic response I have developed over time of trying to cram everything in as quickly as possible so that I don’t miss out on a single thing. Mind you, it isn’t doing me any harm, I am sleeping well, and I am sure I will relax a bit as time goes on and I get used to being able to just “go and do”. SUCH a lucky girl...

As February progressed, so did the improvements in my health. I moved on from mere liquids and tasted soup (which the lovely dinner lady strained for me) for the first time. They would also regularly deliver different flavour juices to get my taste buds working again. On her next visit, the swallow lady agreed that it was probably time for me to attempt some very soft food. In complete over excitement I selected lasagne, much to the dietician’s horror, as she had envisaged a yoghurt or something similar, and pointed out that my idea of soft may vary from theirs.

I had done away with the ventilator completely by now and used only bi-pap, spending more and more time on just the trachi mask with no support at all. Even though it was still hard work as the medical team continued to push me, I enjoyed increasing amount of time I spent being able to breathe on my own and not having air forced in by any mechanical means. I still needed assistance in sitting up and moving to the chair, but it now only took one nurse to guide me gently round as opposed to two nurses plus a standing frame.

My physio continued to find new and interesting ways to try and test my strength and expand my new lungs. One Tuesday she wheeled in a large exercise bike. Getting on it was probably the biggest obstacle but once on I managed several minutes continuously before grinding to a halt. The factor which caused me to return to my chair was actually the hard and awkward shaped seat hurting my rather skinny behind. The entry of the bike into my recovery was a big boost; I remember clearly the summer before when I had a collapsed lung and a chest drain in situ, sitting on the bike, peddling slowly with tears running down my face with sheer effort, so now a bike was in place I was in more familiar territory.

Things moved rapidly on from the bike. I was lying in bed watching the door, waiting for the physio to arrive, and she bounced in brandishing a CD which turned out to be something along the lines of “The very best line dancing album in the world ever”. So up I got and holding onto a physio either side of me began an unsteady and slightly uncoordinated line-dance, weaving side to side and forwards and back, in time to the music. My brain wanted to do a sharp, slick, synchronised dance but my legs would only let me shuffle and wobble to and fro, like a pensioner who has had a tad too much sherry. Our strange trio hobbled around the room, much to my mother and A’s delight, until my legs began to buckle and I sat back down on the bed. When the physios left, A pointed out that even though my legs had given way, I was hardly breathless at all; already a huge change to how I would have been with my tiny old breathers.

The day after this comical dance routine, it was decided that I was well enough to be moved to the main Transplant ward. This would be a huge step in the right direction, with small but precious differences such as the open visiting hours bringing me one step closer to normality. I was extremely nervous as during my time in Intensive care, I had had a nurse with me 24 hours a day. They were prepared for my anxiety and had been trying to get me used to it by leaving the room for short periods of time over the last few days, but I was still very unsure of how secure I would feel, alone in a new environment. My nurse from ICU came down with me and stayed with me for the whole afternoon, setting up my room and putting up my cards so it looked a more warm (and infinitely more pink) environment. As her shift came to an end, she smiled at me warmly, squeezed my hand, told me (again) that I would be fine, and shut the door.

Being alone for the first time in 2 months was extremely strange. There was an eerie silence, as I had become accustomed to the gentle lull of noise and discordant bleeps which permanently echoed around intensive care. I lay perfectly still – a strange instinct which comes into play whenever I feel threatened or unsafe, as if by being still my body won’t let me down – and concentrated on staring at the cards which adorned my room to keep from panicking. The ice blue plain walls which were usually so cold and uninviting were literally covered in cards of all colours of the rainbow, although admittedly predominantly pink and most with a few glittery bits so they would sparkle as the fan caused them to move gently in the breeze. As the minutes ticked on, I began to feel more relaxed, and before I knew it the nurse was in the room drawing up the evening drugs. It took a few days to get used to this new lower level of care, but as time went on I began to enjoy the new periods of privacy this allowed me to experience.

Went to Harefield yesterday for my regular check-up. Things continue to look good with both lung function and blood results improving (woohoo!) I found out yesterday that I have a paralysed diaphragm; during the complex removal of my old lungs the nerve which runs to it must have got damaged. Apparently there is a chance it will come to life in the next few months but it might decide to lay around in a dormant and slobbish fashion forever. I was a tad anxious about this as you can imagine (one would assume the diaphragm is quite essential for breathing and the like) but was told I shouldn’t worry too much I just might never get full capacity with my new lungs. I also do have some remaining damage from the huge infection I contracted at the beginning, but that didn’t surprise me as it would have been a miracle (or the ending of an overly cheesy film) if I had come out of that unscathed.

Seeing as I already feel so amazing with 50% function I think I am extraordinarily lucky as it is and will focus on how I feel now as opposed to where my lung function might/should be. I was also told I can now go swimming, which I am completely over excited about as I used to love swimming and haven’t been for well over two years. You will be able to hear the whooping and yaying all over the country when I step into that pool for the first time. People are already signing up to do the Hydro Active with me (hurrah!) and we have just set up a justgiving page (which is still being jiggled about and added to): www.justgiving.com/emilysangels2007

The 11th February was a day of excitement on the ICU ward as Richard and Judy came to visit. Although still feeling considerably down and nervous of pretty much everything I was awake this time and looking forward to seeing them. They came in one at a time with my mother and were wonderful visitors; my mum said she hadn’t seen me smile and look that animated since I had the transplant. They also spoke to other patients and relatives on the ward, lifting the atmosphere considerably and bringing a rare but positive excitement to ICU.

I remember the day after that very clearly, as it was a dreadful day panic attack wise. I started to get quite severe ones whilst on the ventilator, but even once I came off it they continued to escalate and I would almost paralyse myself in a state of fright. I was furious with myself as I knew it was psychological and felt I should be able to get them under control but it was just impossible. I had had minor panic attacks before but all my usual techniques such as picking up the phone and phoning someone or moving around and doing something to distract myself were obsolete as I was still stuck in a horizontal position and unable to speak. A friend and my youngest sister came to visit and watched helplessly as I worked myself up into attack after attack. Over the next week continued talks with the psychologist and advances in my health would help me get these retched things under control.

This Monday was also highly significant for a much more positive reason; the speech and language therapist came to visit (who I renamed “the swallow lady” due to my eager focus that this lady would allow me to drink again for the first time, and much to everyone else’s amusement). She examined my swallow reflex and decided it was safe to give me a few sips of water which was dyed blue, so they could confirm that I was not aspirating it into my lungs. After passing this test, I was asked what I would like to drink (clear liquids only) and chose apple squash (which my uncle had driven up specially on my request). After over 5 weeks of nothing passing my lips, to sip a sweet juice was just heavenly. Drinking is the thing I missed the most (more than talking surprisingly); I think it must be deeply embedded in human nature to drink as despite the fact I was drip fed therefore not thirsty, I yearned for a drink and frequently dreamt of just gulping great glasses of juice or even just water.

Two days later marked another huge landmark in my recovery and return to humanity; I tried the speaking valve for the very first time. A couple of days before I had had my first experience off the ventilator with just a “trachi mask” on (a mask which blew 8 litres of oxygen into my trachi but had no mechanical support so I was breathing on my own) and had managed a grand 10 minutes before becoming tired. Each day I built this up gradually, and was now ready to try speaking with my new, slightly-stronger lung muscles. The first thing I said was a very unimaginative “hello” and the second “I don’t like this” (meaning the feel of the whole thing, what a delightful patient I was). My mum came to visit that afternoon and I put the valve in as a surprise for her, so when she entered the room I said “hello how was your day” at which she started to respond as normal before screaming with excitement when she finally clicked.

These two small replacements of normal human behaviour seemed to really boost my confidence and spirits as the improvements continued at a good pace. On Friday 16th, the physio came into my room and announced we were going outside. I was slightly taken aback and assumed she had the wrong patient, as I was still wired up to huge amounts of equipment but no, she, two nurses and a technician all began busying around me, moving various machines, monitors, catheter bag and drips onto a large metal trolley and helping me transfer into a chair, wrapped head to toe in blankets. Our strange procession weaved its way slowly through the unit, and out of the nearest fire door. The blast of fresh air on my face took me aback sharply. I hadn’t experienced any fresh air at all since entering ICU as you are not allowed to open the windows to due infection control regulations. The air was crisp, fairly cool and extremely fresh. I struggled to focus in the daylight, and looked over to where the road was to see cars going by and people walking along the pavement, going about their daily business. The intensive care unit is really like a whole separate world and I was becoming fairly institutionalised by this point. Despite my fears of going outside (leaving the safety of the plug sockets and O2 to be reliant on battery packs and a cylinder made me extremely nervous) those 10 short minutes were enough to start stirring my senses again, senses that had been dormant for the last month and a bit and now needed to be awoken and used once again.

Just a very brief post...

In reference to my previous post:

Edit and disclaimer one: Contrary to what it may appear, my wonderful mother accompanied us on said beach trip and made the occasion what it was. This announcement was made due to my own guilt and not at all because she has hounded me constantly with a sulky face at being left out.

Edit and disclaimer two: To any of Abby's teachers who apparently read this(!) I kidnapped her and forced her at gunpoint to accompany us. And no I won't do it again.

All authors notes out of the way, more exciting news, I have taken a big breath (yay that statement is no longer ironic!) and signed up to do the Hydro Active women's 5k in september. Last year I took part but was pushed round in Denzel for the majority of it (slideshow of the whole thing on my myspace page). I was given day release from the hospital where I was spending time recouping after a series of collapsed lungs and we raised over £15 000 as the Emily's Angels team.

So am muchly excited at the prospect of walking over both the start and the finish line! I am being sensible about it and asked my team first, who said I should be able to manage it by then although I may need to take breaks along the way. It will take a huge amount of training but hey that's what challenges are for!

Sidestepping my story again...It is exactly one month since I was discharged from Harefield and looking back at my recovery so far it is clear how far I have already come. Each day I have found myself growing increasingly stronger; my shakes – which started out so strong I couldn’t hold a cup of tea without spilling it - have almost faded to nothing. I no longer need to push myself up from a chair with my hands, as my legs are now strong enough. I find myself grinning inanely sporadically throughout the day, for example after going through a door and automatically reaching for the tubing which gets caught under the door which of course is no longer there. Every day there are a thousand little moments where I stop and think “I can’t believe I am doing this, I can’t believe I got my transplant” and have to pinch myself to believe it is all real. Some highlights and landmark moments are as follows:

Cooking a meal for myself for the first time since the op

Bending down to pick stuff up off the floor/do my shoes up (the latter being the more common phenomenon) and not getting breathless.

Visiting several friends’ houses I haven’t been able to go to for ages because they live upstairs.

Walking round my garden (my tubing didn’t previously stretch far enough)

Having a bath without becoming breathless and exhausted

Being able to dry myself without above consequences

Being dropped off by A and getting out the car myself and walking to my destination, no assistance required.

Going shopping on foot, not in my wheelchair, and being able to see over the clothes rails for the first time in years.

Going to the hairdressers instead of her having to come to my house.

Eating a huge meal, feeling really full…but still being able to breathe.

Going and going until I become tired, then resting and my energy comes back, as opposed to entering a vicious cycle where breathing becomes increasingly impossible.

Driving in the sunshine, singing along to the radio.

And of course walking out of the front door, with just my keys in my hand, and striding down the road.

Today we celebrated my first month of freedom by doing a Thackray girls trip to the seaside. It was the most beautiful day, spent with ladies (I can’t call my baby sisters girls anymore really!) who have been there constantly for me, but usually having to care for and help me, unlike today when we were just relaxing in each others company.

I ran for the first time today, rather resembled a young animal unsteady on its new legs I think but it felt great. I ran straight into the sea and got my impractical long white skirt soaking wet. Brilliant.

Lucy in the middle auditioning for Fame or similar…my attempt at leaping gracefully not quite as successful.

Thank you for all your feedback on my previous post, I learn something new from everyone I speak to (or hear from) so appreciate others giving their opinions. Health-wise things are going really well, I got a new hair cut that nicely covers the patches of hair that were rubbed thin by lying flat on my back for so long…so finally said goodbye to hospital hair (yay!) – a real confidence booster. (Have just realised talking about hair is not really a health report but that shows how well things are going!)

Concerned about the continuing low readings of nutrients in my blood, and my inability to keep my feed down, the team contemplated more drastic measures such as TPN (where all your nutrients are given directly into the vein). They were reluctant to do this due to the very high infection risk, so started it then stopped it, and began discussing putting a camera into my stomach to investigate further. My tolerance threshold being rather low, I firmly mouthed “no” and subsequently was never sick again. My mother says that this strange exhibition of obstinacy has shown itself once or twice before, where doctors have either written me off, or predicted something I do not like the sound of, at which apparently a look appears on my face and I seem to go in the exact opposite direction; whoever said stubbornness was a bad thing!

On Monday 5th February, the team strode into my room and my doctor announced that I was doing so well on low ventilation support they were going to try me on the bi-pap (which aides breathing by pushing the air in for you but you trigger the breath so gives less support than a ventilator.) I was immediately terrified and asked to be given something to relax me before we tried it. My doctor refused point blank and told me that I would be fine, he would talk me through it. They switched the machines over and told me to just breathe nice deep relaxed breaths. I concentrated on breathing in time with the doctor, and quickly discovered I actually liked this sense of freedom the bi-pap was giving me. The ventilator gave much more controlled breaths and as I used it less and less (I alternated between the ventilator and the bi-pap for some time) I found it claustrophobic and restrictive.

Around this time I also stood for the first time without the tilt table; this was one of the hardest things I had to do. I still had the vac pump on which was constantly sucking and restricting my ribcage, and when I changed to an upright position which I was not accustomed to I thought I couldn’t breathe and would begin to panic. The struggle to push myself up onto my feet, despite having a nurse, a physio and a frame to help me, was tremendous. I cried with frustration at my inability to seemingly do anything and felt that I would never be my normal self again. Later on that week I had progressed to shuffling three very tentative steps, a confidence boost which helped me refocus. I loved the physiotherapy sessions, no matter how hard they got; it felt like I was doing something proactive about my own recovery (plus I could see the results and improvement on a daily basis) and would wait eagerly for the physio to come in and tell me what we were doing that day.

As the days went on, my recovery continued, but mentally I really began to struggle. I started to berate myself as I am used to remaining positive and having a good focus and now was unable to see the light at the end of the tunnel. Whenever I had had a CF related exacerbation, I had generally been able to remain positive as I had a target, a position health wise which I knew well and which I was aiming to return to. Suddenly, the other side of transplant I felt lost; I was in brand new territory now, this was all untried and untested with me so no one knew where I would end up, and I didn’t have confidence in my new lungs and the ability of my body to overcome this never before encountered hurdle.

Determined to try and snap out of this all-time low, I requested to see the psychologist. Luckily she was a fantastic lip reader and we managed to have a good long session discussing many of my fears and worries and talking through some processes to try and tackle them. One thing she told me to do was to start writing things down. This I found terribly cathartic as being unable to talk I had not really been able to share my thoughts in any real way.

Later that week it snowed. My nurse was describing it excitedly when she arrived for the morning shift, and helped manoeuvre me into a more upright position so I could see out of the window. The woodland which my window looked out onto appeared to be decorated with white lace; it looked like a strange fictional world, like a scenic Christmas card, not like hospital grounds. That day was also a dressing change (which happened every other day and which they were still putting me to sleep for) which delayed my mum being allowed in my room. When she was finally let in, she was angry and upset. I got upset too and was annoyed thinking she was overreacting somewhat. I didn’t know at the time she had just spent half an hour in the waiting room with a woman who was then called in to be told her daughter had died. Like all my cheering squad, she constantly pushed her own fears and worries back to make sure she could support me as much as possible during these turbulent weeks.

Side-stepping my transplant story again for a minute, I had an interesting chat which prompted me to write the following. These are just my thoughts on the matter; I would be interested in other people’s opinions too (my guestbook on the right hand side allows private comments if you would rather your opinions not be public).

Concerned for a mutual friend who is struggling at the moment both physically and mentally (I am sure they will know who they are when reading this) I was discussing having a positive attitude with a friend. When trying to convey how I felt that their perspective needed changing, my friend replied “some people just don’t have the same outlook, and you can’t change that”. For some reason that took me by surprise, and this isn’t the first time I have come across this mental block of mine. I wrote about it in an old blog; is positive mental attitude inherent or is it something you can create? This is where I personally believe perspective is a big factor here; where it depends on the angle you are coming from as to what you see, although whether one gets to choose that angle or not is another matter.

It is hard for me to understand. Mind you no harder than it ever is to try and comprehend someone else’s feelings, to try and put yourself in their shoes. A certain amount of my positivity is surely genetic (anyone who has met my mother will know what I am talking about) therefore I am lucky that I often automatically see humour or something good about a situation. But at other times I really have to try to find that rainbow, the same as anyone else.

I have certain beliefs on the whole matter; I honestly truly think that my attempts to stay focused on the good things present in my life helped me get as far as I did.
My theory of how I survived is that I was so desperate to live it gave me the drive to overcome the impossible. Now I know all to well that isn’t always enough, I have seen many extremely determined people loose their battle, but my point is without that drive I think you stand much less of a chance at triumphing against the odds. It is damn hard work at times. I cried, I sulked, I pouted, just like anyone else would when facing adversity. But after a good toys-out-of-the-pram style tantrum, I would try and find something to focus on that was positive. It’s hard to find sometimes, one time as blogged here, it was A who had to point out to me surely there was a key positive point I was missing and that was “I’m still here”.

One of the best tips I was given was from a friend who is now 3 years post transplant, and he said he would look in the mirror and smile and laugh. On my darkest days I would go to the mirror face it and pull a large (fake) grin. I would also stare myself straight in the eye and say “I will do this. I will get my transplant”. I did this at the times when what I actually believed was that I would never get there, almost as an attempt to talk myself out of those feelings I suppose.

The reason I desperately searched for positives to clutch on to is I believe if you stop finding things to love about life, surely you will lose the drive and forget what you are fighting for? It’s easier to fight for something you are clinging on to than to fight for something unattainable, predominantly because we don’t know what is round the corner but we know what we have today. For those who are still waiting, don’t lose that spark, that passion for life, it may be tough and it may be vastly restricted but whilst you are alive you are living and there is hope, no matter how dark it gets.

My motto is “this is my life and I choose to love it” for a reason – I had decided that no matter what happens, transplant or no transplant, I was going to enjoy my life as much as I could because I couldn’t change the hand I was dealt and you only get one chance therefore best to make the most of it.

I hope this late night ramble makes some sense (it’s a tad disjointed and waffley, sorry about that) and that no one takes it personally, it isn’t a slight on anyone else’s behaviour or opinions, merely my attempt to shine light on how my little brain works (or attempts to work).

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.

Thank you for your kind responses following my babble on Tuesday, it is a wonderful motivator to keep pushing and campaigning knowing there are people behind you. My appointment at Harefield today went well, although one of my blood results was a bit wonky meaning we have to trek back up there tomorrow morning for repeat tests. Still it is gorgeous and sunny, and it is a pretty drive, and sunshine can’t fail to make you smile. Anyway! Let me finish the slight cliff-hanger I left you on…

Friday 19th January, my wonderful cheering squad crept cautiously into Intensive care. I was still there, still hanging on, and even better than that showing the first sign in days that I might be getting on top of things – my temperature and heart rate had both dropped. Due to me being septic, the staff were extremely cautious about giving my family false hope and would only confirm that they were cautiously optimistic but that I had an awful lot of fighting to do. I was started on haemoglobin and blood transfusions to help me fight and over the next 24 hours my readings continued to stabilize.

By Saturday lunchtime my family were feeling a lot more optimistic and decided to go out for a celebratory meal. Clearly I was most disgruntled at not receiving an invite because just as their gorgeous hot dishes arrived, my mother received a phone call saying they needed to return to Harefield straight away. Apparently not satisfied with all the medical chaos I had displayed so far, I had decided to embark on a new tact and developed a blood clot in my leg. A specialist surgeon was being rushed over from Watford and my mum got back to be greeted by the consent forms for an operation that if it didn’t succeed, would result in the amputation of my left leg. Kind of me to create a new type of worry for them I suppose, rather than play the same “I have dodgey lungs” card over and over again.

The operation involved a little umberella type mechanism being inserted into the vein (lack of medical knowledge showing through here) and luckily was a success. As one surgeon so amusingly put it “we would be reluctant to remove the leg as it would hamper her recovery somewhat”. Despite this small setback, I continued to show signs of improvement, with the infection markers in my blood dropping daily. It was discovered around now that I wasn’t absorbing properly, which meant I wasn’t getting the nutrients so vital to my recovery. I was also still being sick when they gave me the IV I was allergic to which I suspect wasn’t helping matters very much.

That weekend I got my first visit from Richard (as in and Judy) although I was well sedated and unaware of the excitement his presence on the ward caused. As my progress continued on it’s very slow but upwards track, my family started to read out some of the many cards that had already winged their way in my direction. I was sedated but would respond by smiling or moving slightly.

I had by this stage developed something called organising pneumonia (wonderful name, it made me smile every time I heard it) where repeated high temperatures and infection causes the body to get a bit cross and it starts depositing debris in the lungs which consolidates and shows up as scary white patches on the X-ray. This was however treatable and I was immediately started on high dose steroids to prevent permanent scarring.

On Tuesday 23rd January, they inserted a tracheotomy and my sedation was switched off. One of my first attempts at communication was to ask for the Vac pump - which continuously squeezed and sucked round my ribcage to extract infection from the wound – to be taken off (I did not succeed and the vac pump stayed in place for many weeks to come). Over the next few days I continued to come round more fully and became more communicative with it. The surgeons came round to see how I was doing and I politely informed them they had one week in order to get me off the trachy. Slightly stumped by this dictation of management the main surgeon attempted to gently explain that it may take a little longer than 7 days.

As I became increasingly more awake, the gradual realisation of exactly how ill I had just been began to sink in. I found myself unable to move; I couldn’t lift my own head, pull my legs up or raise my arm, as I had lost so much muscle strength. I couldn’t talk or eat due to the tracheotomy and ventilator and discovering that I was no longer in control of any of my body was a frightening experience. I asked my mum and A how close I had come to dying, but they brushed over it slightly, concerned for my mental welfare at this delicate stage. Whilst the initial danger zone I had fallen into was now coming to an end, newly awake and aware of my surroundings, the journey was only just beginning.

A small break in the story here to return to my usual rambling as I need an outlet tonight. Lisa, a friend of mine waiting for transplant is having a very rough time. She has a nasty infection and is currently on a ventilator (she was the other CF girl on Watchdog).

The frustration is unbearable. I am so lucky, I have had my life saved by that gift of life and now face a possible future full of quality and experience, possibilities and opportunities and yet 50% people who are in exactly the same position as I was will never ever get this chance. I campaign as hard as I can but I can’t reach everyone and tell them all what a miracle organ donation is. She deserves this transplant, everyone waiting deserves it, it just doesn’t make sense. Tonight I am writing to two very wonderful women, both mothers of people with CF who never got the chance of a transplant and yet still sent me wonderful messages of support and congratulations when I received mine. Some people in this world are so big and so full of dignity and courage it makes me feel very small indeed.

When thinking of friends waiting, or friends I have lost who never got the chance, the self-centred part of me is filled with a quietly despairing “why did I get the chance and not them” which is silly as there is no rhyme or reason, just chance and luck and then we must make the most of what we are handed. I almost feel guilty.

All I can do I think is make sure I appreciate the hand I have been dealt and take every opportunity offered. I have been given a truly wonderful gift, and I am determined to make every minute count, for me, for my family, for all those waiting, those who have lost their battle and most importantly, for my donor. Please keep Lisa and all those waiting in your thoughts tonight. Thank you.

www.livelifethengivelife.co.uk
www.uktransplant.org

During my time sedated I had weird and wonderful hallucinations. Bizarrely I hallucinated about my own recovery; I thought my whole family took me outside in a wheelchair and that I was walking around (albeit unsteadily) unaided. These hallucinations of an advanced recovery made it all the more frustrating when I re-entered the real world and found myself unable to move let alone get up and walk. I also had a few scarier hallucinations including those of fellow patients dying and thinking that there had been a shooting within the hospital and that I was in danger from a similar attack.

24 hours after I had been put back on the ventilator, I spiked a temperature. The doctors warned my family that this could be the first signs of infection, but all anyone could do was sit, wait and see. I was also quite puffy due to excess fluid gathering on my ankles and wrists, so they decided to “dry me out” lessening my fluid input which sent my heart rate through the roof. As it became obvious the ventilation may be a long term thing, discussions started about inserting a tracheotomy; a tube directly into my windpipe that would give me back my mouth and allow me to be brought round whilst still being ventilated (my frustration was evident at being unable to communicate in my current state).

During this time I continued in my now notorious trait of being almost impossible to fully sedate. I was highly reactive, in particular to my mums voice (much to her delight) and vexed the nurses endlessly by shifting around in the bed entangling myself inextricably in various tubes and wires. My sister and mum were sitting by my bedside chatting one day, when I motioned for a piece of paper to write something down. Having apparently been unimpressed with someone on the medical team I scrawled “no one likes a butt-munch” much to everyone’s incredulity and amusement.

Over the next few days the infection markers in my blood continued to rise, as did my temperature. Blood gas tests became increasingly poorer and by the Wednesday I was too ill for a tracheotomy to be inserted. The doctors were trying everything and becoming increasingly concerned, telling my family “we are doing everything we can” but emphasising the fragility of my state.

My mum calls the Thursday “Black Thursday” as by this point things looked pretty bleak. My infection markers were through the roof, my temp over 40, my heart rate was 170 and despite being on full ventilation my oxygen saturations had dropped to 82%. I was struggling on but it became clear I was loosing the battle. The doctors sat with their heads in their hands, going over and over all possible routes of treatment. I was on a bucket load of intravenous antibiotics but none were having any affect. Finally they came back to my family and asked what reaction I had to an antibiotic I was listed as allergic to, effectively saying would it kill me if they gave it to me as they were running out of treatments to try. They decided on this tact, and also put me on dialysis as my kidneys were showing signs of shutting down and it was a frantic attempt to cool my temperature. Later that afternoon a dressing change revealed that the wound was full of infection. They reopened it there and then, putting in place a vacuum pump that would continuously draw any infected fluid out of the opening. At the end of the day, my family retired to the residential flats onsite knowing that the next 24 hours were critical, and that the doctors had gone home that night holding their breath.

Thank you for your kind messages about GMTV this morning, I will try to somehow get a copy of it online for those of you who have been repremanding me for the lack of advanced notice!