Sunday, May 27, 2007

I was browsing through some forums earlier which I found as they link our Live Life Then Give Life webpage. One thread was talking about a post we issued about a little girl called Angel, who’s in desperate need of a liver transplant. Several comments surprised me greatly. The general gist of them was “yes that is all very sad but what is the point of this post? What can we do about it?”

This surprised me because it goes against my natural way of thinking. Now I am not boasting, I wish this was a grand self taught ability due to my profound knowledge that this is the right way to be, but actually it is just because it comes as an instinct to me and I can’t help it. When I come up against an impediment, my first thought is what can be done to tackle it. It just never seems to occur to me that there can’t be anything done. I suppose this is a weakness as much as a strength, as it does unfortunately mean I throw myself at sometimes the most insurmountable of obstacles.

I know I am not the only one who thinks like this, there must be hundreds and thousands of people out there of a similar mindset. Is it natural, or have we taught ourselves to try and think like that? That is another discussion entirely. Yes my way of thinking can be tiring. It requires energy and proactiveness both of which take up a lot of time. It also does not always end in success. But the way I see it, if we all sat there and went “well I can’t do anything about it” then the world would just crumble. Medicines would never be discovered, new places never conquered, technology never advanced, the list goes on.

I cannot change the world. No one can, but the tiniest of gestures can make a difference. A smile and a cup of tea with a friend, a card to someone who is ill letting them know you are thinking about them, all these change things for people. And surely it is the minutes in someone’s day that make up someone’s life? Therefore surely you are changing their life in your own tiny way?

I don’t believe in fate. Well actually, I do a bit, but I believe that we are all responsible for our own lives. I had to read a philosopher called Satre as part of my French degree, I think his essay “l’existentialisme est un humanisme” made quite a lot of sense. If you want to do something, you need to get up and do it. Or at least try to do it, not just sit there contemplating whether it is actually all worth it and what if I don’t do it maybe someone else will.

My friend Emmie, who often comes out with more intelligent things than me, gave me a quote from Ghandi which seems to sum up what I am trying to say; “be the change that you want to see in the world”.

Anyway I figure even if I am wrong…at least I tried.

Friday, May 25, 2007

I jumped in the car earlier, to pick up my sisters, who had spent the afternoon being posh ladies who dine out in London. I approached the station and could see them chatting and waving excitedly. The journey home was filled with tales from the day, and they had bought me the most awesome box of marzipan fruits (I swear these things actually look like fruits and veg, and they are strange ones, Melon, Corn etc..!) from Harrods, and had generally had a wonderful time. I dropped them off at home, still glowing, and drove off towards my house.

As I turned onto the main road I started to cry. Cry with happiness. I sobbed thank you, I don't know where to or why, but just overwhelming gratitude to my donor and their family. Without them I would be dead by now, and instead I am driving round, picking up my sisters, going out with friends for the day tomorrow and generally living my life. My family are no longer chained to staying within a phonecalls reach of me, should I need anything or should Harefield call. They have also got their lives back, and this evening was a beautiful demonstration to me of how things have changed.

I still can't believe my luck, I still can't believe it has happened, but my god am I going to make this count.

Thursday, May 24, 2007

Verrrrrry short post on here as I have just waffled on for britain in 2 posts on my hydroactive blog

Have had a fab few days, extremely busy still but I still can't get over how much I can do! My favourite thing this week was my walk with my mother down to our local park, and around "the heron pond" so called due to it's stately looking inhabitant who sits on the little island in the centre of the pond, regarding everyone with slight distaste.

It was gorgeous and sunny, and we set off at a good pace, chatting along the way. As we walked back I couldn't believe how small the hill (which was it turns out a gentle slope) now seemed. I remember struggling up that hill at a young age (my mother confirmed this stating that her comment was usually "you insisted on bringing the dolly and the pram, you can push it home") and then in the last few years have only ever been pushed up there myself in the wheelchair.

Excitingly I wasn't as tired as I thought I would be, although I did sleep for 14 hours so perhaps I was rather tired just not in the chronic worn out fatigue way I keep being nervous will return.

Anyway since I said I wasn't going to waffle on this blog I should shut up now.

Monday, May 21, 2007

Huge moment yesterday – I went swimming. OK that may not sound like a huge moment, but I haven’t been swimming for well over two years, possibly closer to three. Even in the run up to me using oxygen 24/7 the sheer effort involved in the whole procedure, walking there, stairs (of which there are often many) getting changed, actually swimming, getting showered and dry (huge issue when constantly breathless) and getting changed again seemed far to huge an obstacle to overcome. Since my transplant I have been building up strength and waiting for the time that the risk (and there is always a risk as I am immunosuppressed) of picking up bugs is at its smallest.

So yesterday, after a significant amount of nagging from my mother who was not moved by me pointing to my diaphragm and reminding her it was paralysed, we drove to our local gym and pool to sign me up – a years membership being a birthday gift from my lovely grandparents. As we pulled up to the centre, I had butterflies in my tummy. It really shouldn’t have been a big deal at all but to me it was another landmark, another sign of returning to a life that somewhat resembles normal. We walked up the stairs, leaving Abby to study in the cafĂ© but be able to wave at me through the window, and my mother and I disappeared into the changing rooms.

As I child, I used to accompany my mother on her ticket, and so spent many happy hours there splashing around and racing my parents or my sisters up and down the pool. I have always been a bit of a water baby, and used to swim regularly once a week for as long as I can remember; something which I attribute the strength of my old lungs to, and one of the key reasons they managed to keep on working right to the end. Apparently on one holiday very early on, we arrived at the poolside and with a squeal of delight I hurtled myself into it, completely oblivious of the fact that a) I required armbands to stay afloat and b) this was the deep end of a rather large pool therefore had to be promptly rescued.

Anyway back to yesterday. We walked down the corridor and onto the poolside. It was fairly quiet, with only one or two members dotted around, casually making their way up and down the length of the pool or sitting relaxing in the Jacuzzi. I suggested to my mother that I sit and watch her first, which did not go down as well as I would have hoped. So instead I was swiftly cajoled into walking down the steps into the pool, where my mother took off and swam rapidly to the other side. I stood there, with water up to my knees, and looked down at the pool. I am not scared of water, never have been (as my childhood kamikaze attempt demonstrates) but somehow I couldn’t quite bring myself to launch in with carefree abandonment. I slowly edged myself in, bit by bit, the feeling of being immersed in water was strange and took me back to being on holiday in Greece where I would spend hours just floating or swimming in the sea.

I finally decided that feeling though I was as if I was about to launch myself out of an airplane, this was a tad melodramatic and grabbing hold of the edge, I pulled myself into the pool so I was completely immersed. Swimming is like riding a bike, once learned never forgotten, and I quickly found my water wings again. Being in the water was just such a liberating feeling, and in a completely over exited way I challenged my mother to a race (which I won incidentally) suitably knackering myself out by the time I got to the far side. We swam about a bit more until I got a stitch and decided to call it a day, sitting myself on the side of the pool dangling my legs in the water.

The whole experience was just so strange, it was something that took me back to my childhood, to a time where I had little concept of what being really ill was, and then represented something I thought I might never be able to do again. Needless to say, I arrived home exhausted but beaming, and I am looking forward to going again, and this time braving it to the gym (where I really need to start my training schedule to try and work up to this 5k in September!) Freedom. Freedom to walk, to climb, to swim, to talk…to breathe.

Thursday, May 17, 2007

We have had a busy week campaign wise – a young girl called Jessica who contacted us requesting to help has had her story picked up by several Media outlets, including her local BBC news and the Sun newspaper. If you click on the BBC article link and look on the right hand side of the page, you can view Jessica's interview online. I was interviewed as the expert opinion (not my own label, I suggested UKT but they said they wanted someone from our campaign) and Jess and her mum were interviewed, putting across a thoroughly powerful and emotive message. I believe that it is only through real life stories that we can really motivate people to understand the importance of organ donation. Emmie and myself are continuously grateful to those who come forward to share their stories, and hopefully save some lives by doing so.

Last night I gave a talk at the 41 club – a club for ex Round Tablers. They were a lovely group and it went really well, with all members taking at least one donor registration leaflet afterwards, and many taking several for friends and family as well. I have had two further requests stemming from this talk, so hope to increase my reputation as a guest speaker and continue to spread the word in this way. I think I am lucky that I do not mind (in fact enjoy) talking about my situation and therefore should use it to help others have the same chance as me.

Surprisingly (well I found it surprising) there seemed to be quite a few requests to learn a little more about the mysterious ‘A’ (you romantic lot you). Unlike me, (a born drama queen who enjoys spilling her life to anyone and everyone and could talk for Britain) A is a far more reserved and private person, therefore for his sake I would like to be vague about…well pretty much everything really.

I have known A for many years. We have grown up together as people, and the obstacles we have encountered throughout our relationship have just strengthened us I think. People think I am brave to have gone through the past year or so, but I had no choice. He could have walked away but never ever did.

Monday marked our anniversary. On Monday evening, on our way to a restaurant in London, A got down on one knee and proposed. I may have cried... A lot.

I am the happiest girl in the world right now. I cannot believe my luck so far this year, I am spoilt beyond comprehension and keep thinking that this is all a bit of a dream and I will wake up with a sharp jolt back to reality. A has always been there for me, he has been my rock, and now I get to spend the rest of my life trying to make him as happy as he has made me.

Friday, May 11, 2007

It strikes me that how others perceive you has a dramatic affect on how you perceive yourself. My parents have never ever allowed me to feel different, and I was most certainly never allowed to feel “ill”. One of my mum’s biggest fears is that people would tiptoe around me, treating me differently, leaving me out of activities and letting me get away with things due to my illness. They wanted people to get to know me as “Emily” not as “that girl with CF”. Consequently my parents decided not to tell anyone I had CF when I was born. At all. The other main reason for this was they wanted me to have the choice of talking about it to whoever I wanted, whenever I wanted. When I commenced primary school, they informed the headteacher (for safety reasons) but instructed that no one else was to know, and the good woman that she is she kept her word. I merely took my tablets to school in my lunchbox (something that would be grossly frowned upon now with all the health and safety regs) and no one else really needed to know - I could line up, run around in the playground, do PE and every other thing a normal infant had to do at school.

One day on the way to school (which was incidentally nearly a mile from my house, probably what stretched my lungs to be so strong and withstand all the pummeling CF gave them) I was skipping alongside a fellow classmate whilst our mums chatted, and we were talking about cartoons on television. She asked if I watched Captain Bucky O Hare or some such classic, and I replied casually “yes, actually I watch it before school whilst having my fizz” (which was my name for Physio). This left a rather confused friend and an appalled mother with the idea that my irresponsible mum allowed me to sit with a can of coke in front of the TV every morning. I believe she left them with this image for amusement purposes.

As I grew up, it quickly became apparent that I was perfectly happy talking to anyone and everyone about CF, and it became much more public knowledge. But by now I had a reputation for other things, for being good at English, enthusiastic about pretty much everything (whether I knew what it was or not: “I joined the choir today….mummy, what’s a choir?”) and for being undoubtedly the most talkative member of the class. So CF merely became a part of my personality, which people seemed to quickly accept as they already knew I wouldn’t fall apart and break at the slightest cough.

As I say I was never allowed to think of myself as ill. My parents were also fairly strict. Weight gain is a very difficult issue with CF and my parents would not tolerate me not eating at meal times. There was simply no other option. If I didn’t make a good enough attempt, the kitchen door was shut and I was left in there alone till I had eaten sufficiently. Whilst I rather suspect this is not in the CF Trust’s guidelines of how to deal with fussy eaters, it appears not to have done me any harm, and I have never needed any form of artificial feeding (NG Tubes or otherwise) as I am exceptionally talented in the force feeding area. Missing school was an absolute no no, unless I had an arm missing or similar. Again in my opinion good, as I quickly learnt that having CF didn’t allow me to get away with anything, however this also taught me that it didn’t disqualify me from anything either.

I am positive that my parents’ attitude and behaviour has made me the person I am today – all the good and the bad bits. Even the bits which caused me to howl with rage in my bedroom and write viciously about in my diary (well like any child really) don’t seem to have done the long term damaged that at the time I was clearly convinced their tyrannical behaviour would. I suppose I am in a round about way attempting to praise my parents here, but hopefully they won't read it. Particularly my mother as she will become impossible.

Just to ensure her ego doesn't jump too high, I will end with what I find an amusing and classic example which occurred today of why I perceive myself the way I do.

Scenario: Have just picked up my mother to drop my prescriptions into the doctors whilst I hover in the car.

Me: Hello! Did you have a lovely day?
Mother: Yes fine thank you, (serious tone) although I did have to leave work early to go and see the doctor.
Me: (somewhat alarmed) Why is everything ok?
Mother: No, I have had this REALLY BAD rash covering my face for about a month, it’s terribly serious. (proudly) I have been given a real prescription and everything for some important face gel.
Me: (somewhat confused) Really? (trying to be reassuring) I haven’t noticed it at all, honestly.
Mother: (in a fit of indignant rage at said rash not being taken seriously) that is because you are completely involved in your own health and haven’t managed to notice my serious MEDICAL ISSUES!

Cue stupefied pause followed by gales of hysterical laughter from us both.

I love my mum; she really does know how to bring some perspective to ones life.

Now I have finished telling the Harefield part of my story, (and enjoyed telling it) I am looking for other things to write about. Seeing as I am not convinced my life is all that interesting, is there any “chapters” people are particularly curious about? Otherwise, as you may have noticed, I shall just rabbit away randomly about anything and everything (surprised "surely not" faces please....)

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.

Friday, May 04, 2007

Oops, not quite the promised next day update then!

Harefield went fine. I was dropped there early in the morning and went and performed the obligatory tests. As soon as I saw the lung function numbers (which were considerably higher than my readings at home) I knew I would be ok to go home that day. Which I duly was, sent away with the warning that if the wheeze doesn’t disappear and the lung function continues to be silly then I will need a bronchoscopy for further investigation. If my memory serves me correctly I spent the whole of the last one I remember begging them to take the camera out, so good luck whoever has to perform that.

This morning was great fun, with Watchdog coming to film a very short “what’s happening now” clip for Wednesday’s programme (there no one can say I don’t tell them now). I will probably appear for all of 30 seconds so really not worth setting your video for. The crew took me to my local park – the last time I went there I was sitting in Denzel, with a cylinder of oxygen by my feet, wrapped in layers and glowering as I was cold and did not wish to be outside (charming patient I know). Today I walked into that park, across the grass (Denzel was never a fan of grass so it’s quite a novelty) and we filmed me sitting on the swings; something I haven’t done for a long time as I suspect a Clairette (oxygen cylinder) flying at a child’s head would count as a slight health and safety liability. There is something about sitting on a swing, I think it takes you back to a happy carefree time in your life and just makes the world seem bright, safe and accessible. I may or may not have swung back and forth like a child until I was asked to remain stationary for filming purposes.

So the filming was fantastic fun, and I got a little outing whilst doing it. And as always when I do these media things I got to meet a group of new people; I love meeting new people, although I now tend to talk so much not one of them can get a word in edgeways.

My main task next week is to join the gym. I now have clearance from Harefield to do so (they mentioned something about taking it slowly but I don’t really remember what they were saying) and I just have to pluck up the courage to go and join. It’s a fairly daunting prospect as I have never been sporty (it was a lung transplant, not a personality transplant) but I am excited at the idea of training properly for the Hydro active (for which we now have a team of over 40 Angels – places are filling up fast so hurry and get in touch if you want to join us!) As much as I try and convince myself, I am not sure that shoe shopping really counts as hard-graft…

Incidentally, I have discovered the perfect excuse for purchasing yet more new shoes. Wear completely impractical ones that hurt your feet within 10 minutes of entering the shopping centre, complain loudly, and your other half instead of berating you for filling the only shoe cupboard in the house to the brim, will be only too pleased to accompany you into a shop to purchase yet another pair…

Tuesday, May 01, 2007

Quickest of quick posts to say that Harefield went fine today and I am home (yay) and will write more tomorrow when my eyes are not insisting on closing of their own accord!