Things are tough at the moment. My lung is persistently misbehaving – not only is it refusing to come up, and sitting about 1/3 of the way down in a fairly deflatey and obstinate manner but I am getting slightly more symptomatic, although these symptoms seem to appear at the most unhelpful time such as 8pm at the weekend, so that my consultant has to trek all the way in (which to her credit she does) and then said symptoms seem much reduced again come the morning when all the doctors are there fresh-faced and ready to tackle things in actual daylight.

The bottom line is that 5 days on, there has been no improvement. This means that the only option left will be a drain. the sooner the drain goes in the better, as the longer the lung is down the harder it is to encourage it to reinflate, due to it’s now cardboard like properties as opposed to nice stretchy elastic behaviour that healthy lungs exhibit. They want to hold off putting the drain in overnight or at the weekend as they want the top dog (not sure what their real title is) to do it under CT guidance due to the air pocket’s tricky location, so hopefully we are on hold till tomorrow. Unfortunately due to said persistent naughty behaviour (of lung not me) I am now confined to my room and not allowed to do any exercise (not even allowed to do physio properly!!) to try and keep it as stable as possible. Whilst one might imagine enjoying the freedom of not having to work on lung fitness I am finding this quite unsettling; I am desperate to keep whatever stretch and reserve I have in my lungs and so even 48 hours is not fun as it feels like I am just letting things degenerate, although obviously this is not the case as they are monitoring me carefully and it’s a very short period of time.

When the team came to talk to me this morning, my doctor said that she was very aware I need a life outside these walls. But herein lies the problem – to ensure that this lung “sticks” and does not come down, there are a number of options, the most successful being gluing. The aforementioned however, along with a few others would prove a contraindication to transplant. She asked me outright if I would like this done and explained that many patients by now would be saying “ok enough is enough I need my life back now do what it takes”. So two choices laid at my door, do I chose a “get out of hospital now” card and put an end to my lung collapsing escapades, but on doing that close a potential future portal, or do I ride it out, putting my hopes in the transplant basket as it were? Do I wish I had a crystal ball, and would knowing what the future holds actually make things any easier?

The thing is, it wasn’t really a choice I had to make. The gluing isn’t for me. Knowledge isn’t what makes the future easier for me, but hope does. Transplant is my eventual goal and aim, it is a long term “improvement” which I am fighting for, and when at my worst, hanging on for. Whilst I am fully aware it is a target I might not attain, I need it as a guide light for when things get tough. I don’t want that taken away. The team readily agreed that vetoing gluing is the right option for me, but wanted to ensure they are offering me every possible route. So it looks like we shall be proceeding with a second anterior drain, but my doctor is going to talk through some other possibilities with the transplant team to make my lung stick that little bit more, but to keep the balance so it doesn’t interfere with potential transplant. I have been feeling quite down and scared of this drain, as the previous anterior one was such an unpleasant experience, but have just had a very reassuring chat with a physio (see support work, councillor, they do it all!) about much more attention to pain management and control, so I am going to go into it with the thought that it wont be anything like the last one.

On a lighter note, not only did I manage to get out for a picnic with A yesterday day (which was just gorgeous) before lung started mucking about again, but then my mother came up to stay the night as I was sporting a somewhat pouty face, which she promptly managed to eradicate by bringing a sense of normality back. She arrived in a loud and blustery manner, went searching for a video and came back gleefully clutching “Chitty Chitty Bang Bang” (which as we started watching I realised isn’t quite the seamlessly edited and tightly constructed narrative my childhood memories would have me believe). Sense of normality continued on to this morning, when she woke me up at about 8am “just to check” what time breakfast should be served, in case by some dire misfortune I (and by that she meant she) had been missed out. What would I do without her…

It wasn’t that I couldn’t think of anything sensible to add last night (honest), it’s just there was no news as such so decided to wait until this mornings X-ray etc before updating.

Last night I found out a friend, Mary, who was waiting for transplant like me wasn’t doing so well. We have been emailing back and forth a lot, sharing the highs and lows, the fears and hopes, and generally supporting each other along this rather rocky road that is the wait for a transplant. As always the fantastic CF community rallied round and messages of support began flooding in, so I was relaying them to her boyfriend Alan via text then via email. Feeling entirely helpless and knowing she likes to read my blogs, I sent some similarly waffley emails, as I had that awful itchy feeling of must do something, anything to help, and these were read to her and she would squeeze Alan’s hand to show she could hear and apparently even managed a smile.

Mary and I had this thing in our emails, where we decided we were going along this rocky road hand in hand, as our stats were pretty similar, and so whichever one was struggling at the time, the other would gently remind them that they were holding their hand, pulling them along. Sounds strange, but it was comforting. This morning, aged 23, having fought and fought till the end, Mary ran out of time. There are no words when this happens, because there is no rhyme, reason or fairness. All my thoughts are with Alan and with Mary’s family, it is just very very sad.

This has put my news into context; I would have probably been stomping on here today as after going down for my 55930th X-ray (actual number may vary from melodramatic guestimate given) I have just been informed by the team that I am definitely not looking at home before next week; lung is still decidedly deflatey and not even attempting to sit up and take notice at present, and until it starts moving in the right direction, it is not safe for me to stray too far from the hospital. Having reflected on this a little, and taking into consideration today’s events, I consider myself in quite a fortunate position. My lungs are obviously incredibly precariously balanced right now, however I am feeling well, I am not in any immediate danger, but due to unstable and generally naughty lung behaviour I remain urgently listed for transplant.


I am planning a shopping spree (will carefully ignore all envelopes that look like bank statements when my post is brought up) and a picnic with my family in the nearby park, perhaps a Sunday lunch out too, so a good weekend lined up. I still have that chance ahead of me, and as Alan reminded me what I need to do now is concentrate on fighting hard myself. And I will.

Lots of love Mary the fairy xxx

Disaster: I discovered about 20 mins ago that I have inadvertently sent home my entire sweetiebobble supply when I packed up most of my stuff yesterday (I have been here 7 weeks and accumulated huge amounts of stuff so am sending it home in several loads). I don't know how it happened, I had 3 tubs of the stuff up here.... A not impressed as we have 2 tubs at home, which makes a grand total of 5 taking up space in the cupboard. I have now been threatened with having it added to savoury food as well as penance for naughty behaviour.

Will blog something more sensible later.

Now if I should have learned anything by now, it is that my lungs are extremely strong willed and stubborn and need to feel that they are the centre of attention and in control at all times. So like me only magnified. Having not learned that, I today, over-enthusiastically started packing up my room, took down all my cards (over 80, thank you so much you lovely lovely people) and began making preparations to come home having been told by the team yesterday that this was the likely happening. I was sitting on the bed at about 4pm, surrounded by bin bags of stuff, when the doctor came in. His promising start was “it’s not too bad news” which immediately made my heart sink. Apparently this morning’s X-ray showed that that [insert appropriate expletive here] airleak has grown in size again. His words rained down on me like a shower of rocks, and whilst I tried to listen nicely to his reassuring words, which explained that this might not hold me up going home but will need careful monitoring and it isn’t looking awful, I had to bite my lip quite hard so as not to scream, throw myself on the floor, and then cry.

Instead of doing any of the above I asked for my physio to be bleeped (the poor physios here should be paid for their psychologist role as well as physio they really should) and cried at her a little bit, then talked it through calmly. Minutes later, my consultant came in surrounded by bags, boxes and piles of stuff, confirmed yes it is down a bit, and that as I suspected, yes this will in fact delay my going home. Her reasoning is completely valid and I agree with it; we have only had one X-ray showing it has gone down. What is more important to know is whether it is still going down (i.e air is continuously leaking again) or whether it collapsed a bit again and has now stablised, or (let’s think positive people) it collapsed down a bit and is already on its way back up. But essentially only further X-rays can tell us which of those options my lung has decided to take, so no talk of home for the next 48 hours.

48 hours isn’t dire, in fact in the grand scheme of things it is nothing. What was more frustrating and crushing is simply the fact it has gone all deflatey again. I knew this would probably keep happening, after all the whole point is that they couldn’t operate to remove the damaged part, which is why I am marked as urgent for transplant, but it is still disheartening. I don’t feel too bad, I am a little more breathless at rest today and I did have a very puffy morning but I sometimes have those anyway so didn’t attribute it to any sort of new misbehaviour on my lungs part. On the bright side however, little lung was kind enough to hold off this latest trick till after the hydro active, and so I have a million photos and video footage and beautiful memories and a real live (well not live) medal and most excitingly (people may find me weird for this) aching leg muscles. I never get aching leg muscles, as my lungs always give out before my legs have had enough, and the day after the race I woke up with the stiffest shins and every time it tweaked I felt like dancing for joy. A physio came in to do some stretches and a massage and everything, it was really quite exciting and fun to not be concentrating on chest muscles for once!

So am down but by no means beaten. This is merely a delay in proceedings, and there’s nothing I can do about it tonight anyway. Think I will watch my slideshow again (it is viewable by clicking here) ; I have set it to Heather Small’s “Proud” because that is how I feel and also that is how each and every person who took part on Sunday should feel.

Photos of the Hydro active 2006

There are hundreds more but I dont know how many blogger will allow, so I will put these up for now, and try and make a slideshow at a later date.

Making our way along the course - me wheeling with great grace and dignity and not at all over excited.

Excited Angels getting into the spirit of things.

Time to start walking! Oxygen, check, tiara, check...notice the slight fear in my eyes!

Check out the serious walking face I am sporting there. Angels supporting me every step of the way, plus some cheering from the sidelines having been mad enough to run it.


And over the finish line I go. Absolute best feeling in the world.


The emotion of the day catching up on me, but they are tears of joy, of relief and of absolute overwhelming happiness.

Adjectives and formal English vocabulary fail me right now so I shall start by using a phrase invented by my mother and saying I am currently Smilier than Mr Smiley of Smileyland. I am back safe and sound in the hospital, glowing with happiness after what has been an incredibly exciting day.

Being aware that I had a big day coming up, I settled down nicely last night, ensuring I had done extra physio and an extra nebuliser, and had everything within arms reach so I was sorted for a good nights sleep. Being completely prepared like this is a rookie mistake, it actually ensures you will not get to sleep at a nice early hour because you have something important the next day, a bit like if you know you have a big interview coming up so you don’t want bags under your eyes and are still frowning about that at 3am whilst watching the clock. Luckily I wasn’t as bad as that, but my lungs did throw a mini strop last night by being considerably achey and then deciding to bleed to make me sit up and take notice that they were in fact still in charge. I spoke to the on call doctor who gave me a quick assessment and verified that whilst we will keep an eye on the bleeding it wouldn’t hamper today’s proceedings.

This morning I was nervous, I really was. More that my body would let me down and I would miss out on stuff – once I run out of energy (generally much sooner than anticipated due to over excitement and silly behaviour) I have to stop, there is absolutely no choice in the matter, as if I try to carry on past that I do just fall asleep. I got up early to fit in all my morning tablets, physio, nebulisers and inhalers (and eat a bowl of porridge, check me out carbo loading as if I am some kind of real athlete) and then lay back down to recuperate. The troops (family) arrived at 8.45 to help with the important part, donning the costume, yay!

As we approached the park, my nerves began to subside, as it became clear my lungs felt they might actually enjoy today and so seemed to be cooperating nicely, probably out of nosiness rather than anything. Due to having an acute fear of running out of oxygen I had in fact accumulated the cylinder rations for the south east of England and put them in my car, perhaps overdoing it a bit but better be safe than sorry. We all met at the CF stand and the air was electric as everyone picked up and donned their pink sparkly wings, people gathering from all over the UK to form Emily’s Angels, so many meeting for the first time.

I did incredibly well (if I do say so myself) at adhering to the strict “no talking” rule. OK so it wasn’t no talking, but I did talk considerably less than normal and sat very still most of the time, so by the time we got to the start line and actually set off, my respiration rate was still nice and slow and my muscles were hardly aching at all. The walk round was just lovely. It was cloudy at first, but as we set off the first signs of sunshine were beginning to break through. People were chatting merrily, my mother (who is even more excitable than me) louder than most started pushing the wheelchair with great enthusiasm however appeared to loose interest shortly after the start line and left me in the hands of other pushers for the rest of the race (thanks guys!). we had a nice rota going with people switching duties with wheelchair and huge O2 cylinder on a trolley, but the recently betrothed Mrs W and Abby did vast amounts of pushing, thank you both and all the other helpers.

I absolutely loved the entire thing, I was able to just sit there looking around at this huge multicoloured stream of humanity pouring round the corners of hyde park. Sponsored walks and runs exhibit human spirit at its best – people are driven by passion and by love, and the supporters round the edge are a huge part of it as they encourage cheer and clap throughout. We got a tad carried away in the enjoyment of it all and slowed to a bit of a saunter at one point but sped up again around the 3K mark and headed quickly towards and past 4K. As we past this mark, I felt the nerves begin to build again, I was desperate that once I got out of the wheelchair I would be able to walk from then to the finish, I really didn’t want to have to sit back down again, but was well aware I might have to. Suddenly I heard my name being called, and it was my two personal trainers (also known as my physios who had the task of getting me from “breathless at sitting” in July to “walking outdoors” today, not to mention the more formidable task of getting me to stop talking when walking) were there, they had calculated back from the finish and found a point which they estimated was just over 500 metres away, and they thought I could make it.

This was it, it was now or never, and I was definitely nervous. I had managed to walk about 400 metres in total on the corridors, but that often had breaks in, and so I had no idea if I would be able to do it. Fantastically, the watertight security had a nice open patch right next to the track so said trainers came down and walked with me, keeping a tight eye on my breathlessness score (signed on fingers, 1= not breathless at all, 10=so out of puff I sound like Thomas the Tank Engine and probably would not be standing at the time). The deal was to try and stick between 3 and 4 and that if I hit 5 I should take a break, which obviously in my head I moved up to 6 pretending I couldn’t quite count properly. I set off at a cautious pace, but was waving a bit too much which sensible people around me quickly put a stop to. After that I concentrated on breathing and walking and found myself moving steadily but quite comfortably round the corner of the track, and suddenly the finish line came into view.

I was trying hard to purse my lips as talk, but you try pursing your lips when your heart is dancing with joy so much you cannot help but break into a smile. I kept at a steady pace, I hit 5 about once breathlessness-wise but slowed a little and moved back down to a comfortable 4, and most importantly kept on moving. There were a lot of people shouting for us by this point, and whilst it was a bit of a blur I could see face after face of people who I knew and loved. Suddenly I could hear my voice on the tannoy, and the announcer was telling the crowds who I was (apparently I am waiting for a ‘double transplant’, not satisfied with one clearly) and why I was doing this. People were cheering and shouting, my Angels were all around and I was enjoying every single step.


As I approached the line my mind went sharply back suddenly to a very specific memory; I was in high dependency, so it must have been just over 4 weeks ago, and I had just got out of bed to sit on my chair for breakfast, and I couldn’t catch my breath. I was so breathless the nurse was sitting next to me talking to me trying to bring my heart rate down, and I remember having tears in my eyes, watching the chest drain bubble viciously as the air leaked from my colander-like lung, thinking if I can’t even leave the bed now I would never make it to Hyde park. There is nothing like meeting a target to mend your spirit and booster your confidence and I focused on the white line on the floor getting nearer and nearer. Having trained hoping to do 400 metres, approximately 530 metres after leaving the wheelchair I stepped over the white line. As I did so a cheer went up and I couldn’t help the tears escaping. I had done it. I hadn’t died from that lung collapse, I didn’t still have a chest drain in, I wasn’t stuck in hospital, I am alive, and I was outside, and I was stepping over a finish line of a sponsored walk. As I stood their getting my breath back, I noticed a CF Trust balloon go up in the air. It felt suitably fitting, because as well as doing this challenge for myself, and for people with CF, I was doing this for those we have lost to CF; for Gaz, for Chloe, for Kirsty, Amanda, Stacey, Sofia, and so many more.

We head back to the CF Trust stand to sit and chill with food and drink, and also give people a chance to mingle a bit and me a chance to grab and thank as many people as I could for their incredible contribution and support, how many lucky girls out there can claim they have 70 Angels helping them complete a challenge?! The adrenalin kept me going and my lungs decided I deserved a bit of mingling time too, so I was able to chatter away quite merrily and had a wonderful afternoon. It is only once I got back to the hospital and lay on the bed that I felt absolutely exhausted, but that is perfect and just how it should be, I now have my mask on and can lie here and relax, having had one of the most memorable and enjoyable days of my life.

Oh crumbs, this entry is so long I am not sure that blogger will actually let me publish it, it may spit it out in contempt. I will post some photos on here as soon as I can; (current ones stolen from other people) a big thank you to each and every person who has supported me along the way, both from afar or here today in person.

How is it that at a time when I am supposedly in hospital therefore stereotypically should be bored and isolated, locked away from the world, the world seems to find me and keep me rather busy? This is by no means a complaint, it is fantastic stuff for my mental state, and I am loving every minute. Giant mummyhand has disappeared by the way, and been replaced with new line in right arm, so typing is much easier. Although it was still my main feature when I went on day release, sorry day leave (sounds less Prisoner cell block H like) and some friends and I came up with the idea that I could make a few quid if we propped me up on the roadside with a bucket of soapy water, and hey presto a ready made window cleaning device.

So yes, had a lovely 24 hours at home, including a fabulous celebratory lunch for Lucy’s birthday and a wonderful concert performed by A’s choir, and returned to the hospital yesterday afternoon, tired but very smiley. Whilst resting and absorbing something culturally stimulating on TV, I got a phone call from gmtv, asking if I could appear on the programme the following morning (today). The reason is as follows (bit of current affairs education for you now) The human tissue act is bringing about key changes in the law tomorrow, several will have strong implications for organ donation. I attempted to write a clean, brief and concise summary of the changes, failed spectacularly, and have decided to copy and paste the following which was written by Emma:

1. Relatives will no longer have the legal right to overrule a loved one's wishes to donate organs and tissue. So if someone during their lifetime has made a specific effort to declare their wish to be an organ donor after their death (by having signed the NHS Organ Donor Register or carrying a Donor Card), then their wish to do so will be protected in law and fulfilling those wishes will be a priority for NHS staff. However this certainly does NOT mean that organs will be removed from a person who has chosen to be an organ donor without their family's knowledge. The family will be fully informed of everything all the way along and if they object strongly to the person's wishes being carried out, healthcare professionals will discuss the matter with them sensitively and attempt to encourage them to fulfill the deceased person's wishes.

2. Live organ donation will be allowed to take place between strangers, providing that full consent is given. This mainly relates to live kidney donation and will allow someone to donate a kidney to another person to whom they are not genetically linked (parent/child) or emotionally linked (husband/wife). One particular option that this opens up is called "paired donation". Under current legislation, a wife can donate to her husband, but only if her tissue type matches his. However from tomorrow this couple could be paired with another couple in the same situation, where wife A donates to husband B and wife B donates to husband A.

Sciencey bit over…I was thrilled to be contacted by gmtv but explained I definitely didn’t have the energy to make the journey to the studios to be interviewed. However much to my surprise they were very keen to feature me anyway so set the wheels in motion to gain permission from the hospital to film here. Thus at 5am I woke up, washed my hair (when you are going to be on TV there’s no time for groggy half asleep lungs) and sat back on my bed with a fetching towel turban, feeling smug that I was in plenty of time. Sadly this was premature smugness as the next minute the crew burst in and started setting up to go asap. In a panic I frantically tugged the towel off and began blow-drying hair with visions of manic sonic the hedgehog style backcombed wet look being splashed across the nation’s screens. Luckily my hair is so thin and whispy it dries in less than 1 minute, so somewhat puffed but with suitably tamed hair I sat down and we did the first interview.

I did two for gmtv, 2 for ITV news, one for southern counties radio and apparently was on channel 4 and capital radio as well, which came as a bit of a surprise, but a pleasing one as they had simply used extracts of the above interviews and the more awareness raised the better so I’m not complaining! One of the interviews can be seen at www.itn.co.uk/ then click on “A transplant patient’s plea” on the right hand side. My lungs were utterly exhausted by the end of the first set (although to be honest frantic and silly hair washing first thing may well have contributed - the price of vanity) but I slept in between the interviews and then all afternoon, and so feel very much refreshed and smiley this evening. It has been a fantastic day awareness wise and lots of people have been using today to raise awareness so well done all! The interviewers and the crews were lovely, and I received a phone call from Andrew Castle from gmtv, to say well done and that he has been wearing his T-shirt out and about (yay!) which I thought was very sweet of him.

I am even more chuffed that I still managed to get a training session in, and the physio said my breathlessness was pretty good considering I hadn’t shut up since 5am (she worded it far more politely). Apparently when she was first sent out to visit me she was warned by my other physio “now when you are working with Emily she will keep talking. Do ask her to stop and concentrate on walking but she wont. Keep asking, but you will soon see she just can’t help herself so then give up”. Anyone who knows me will surely agree this counts as character assassination or similar.

Short entry (no honestly!) due to left hand resembling cartoon bandaged limb with unnecessary amounts of dressing, splinting and bandaging for what is essentially a tiny cannula just in a very tricky vein. It amuses me that I look perfectly well except for said mummyhand - had similar accessory last month which resulted a friend turning up and saying in horror “oh my god what happened?” obviously thinking I had omitted to tell her about a car crash incident or something). Anyway back to short update: Such a fantastic weekend…I went was allowed out for the full weekend (so overnight release for the first time in 5 ½ weeks) and it was so good!

I left the hospital Saturday afternoon with medication and IV bags packed for my first night at home. I set off with some trepidation I must admit, but I shouldn’t have worried. Saturday was lovely and relaxed, and then Sunday was my grandma’s birthday. A large wedge of family (including ex flat-mate who popped in to visit and was promptly scooped up by family and set down at a place setting) invaded a local Carvery and sat and had a lovely meal, then back to my parents for cake and cheese and crackers (as clearly we hadn’t been fed enough). The weather was lovely so we sat in the garden, chatting, eating, laughing, sporadic jibes at the younger members (GCSE related this time) and the odd flared temper and snappy comment - generally having a bog standard normal family get together. The perfect afternoon.


Regaining my appetite then!


I dozed off in the afternoon and woke up about 9.45pm to find most people had left having tried in vain to say goodbye to me with limited success (I would open my eyes, make convincing sounding noises as if I was about to sit up and pay attention nicely then go back to sleep) but seeing as that night I also slept soundly, I obviously needed to catch up! I came back yesterday afternoon tired but refreshed. Lung continuing to be nice and inflatey, fluid is lessening and most excitingly, after 6 weeks, they mentioned the prospect of discharge for the first time! Plus of course writing this one-handed was an achievement in itself, so am off for a hot chocolate to celebrate!


IVing nicely in the garden. Note v creative beanpole dripstand and fetching pinkcat IV carry case...

I have had two white nights in a row now. For those who are unfamiliar with my technical (or made-up) terms, a white night is what I call one of those nights where every time you squeeze your eyes shut a million thoughts start jumbling in your head and as you glance at the clock for the 18th time only to see 7 minutes have passed since you last looked, it becomes apparent that sleep is in fact not going to happen.

Wednesday nights took me completely by surprise, it had been my first day of double training sessions and I thought I would be really tired. I was so surprised in fact that I may have tried to blame it on a drug I am not v keen on taking, but actually I don’t think it’s anything to do with that so I shall be good and not pursue that avenue. I am fairly sure it is my brain just catching on to what has happened (I am blonde therefore it is bound to be slightly slow) and just having a bit of a hissy fit about it all. Whilst I am a world away from where I was at the end of July, the only word they will use to me is "stable". Doesnt quite have the same ring to it as "better" does it? But I'm not stupid, we all already knew that I need this transplant to achieve the latter.

When my mind is getting too “busy” I try to think of good things, favourite memories, happiest moments etc, to push the other thoughts out. Main two problems being I have the attention span of a flea and an overactive imagination. So, if I was recounting a scenario in my head that lasted more than a few minutes instead of starting to get sleepy my mind would declare itself bored and bounce off thinking about something else. Happy thoughts became twisted by my overeager imagination (actually it wasn’t that creative, it would tend to go “am in the sea in Greece, lovely sunshine…ooh lung collapses. OK try another one. Am in the garden, sitting in the shade of the apple tree…ooh lung collapses.” You get the picture).

After failing to sleep at all on Wednesday night, last night I decided early on that I wouldn’t just lie there pouting and grumbling at the ceiling, and decided to put on my classical CDs, which A’s sister bought for me when I was in intensive care (and incidentally did manage to lower my heart rate to about 160 which had been steady at 185 for some time). I switched on the light and made a vain attempt at searching before getting cross and quite rationally picking up my phone and ringing poor A in the early hours of the morning to ask if he knew where it might be. Truly reasonable and not at all needy then. CD triumphantly located, we chatted for a bit, and on discussing the positive feelings to concentrate on he pointed out if all else fails the simplest one surely after last month is “I’m still here”.

My first instinct was to feel a bit perturbed, just being here isn’t good enough - obviously my day to day life isn’t going to hold much material for positive thought right now. However this made me deconstruct my day, and as I went back through it, I found myself smiling at all manner of things, just tiny things, passing comments, silly moments (one in particular being me trying to describe my gorgeous Kings Road necklace to friend but somehow managing to make it sound that she could fashion it out of string and various household items by stating that it was “like a charm necklace except they are really big and not charms they are real”. Yes I still don’t know what I mean, worst description ever). It was one of those glorious moments when you just laugh and laugh with a friend over something completely obscure, and thinking about it really does make me smile.

I think I’ve said this before, but try to look at life as lots of tiny fragments. Sweetiebobbles if you will (ah conveniently small, colourful and bountiful). If I viewed “Life” as just one solid aspect I think it would quite clearly just whack me over the head and beat me into the ground. However if it is in teeny tiny fragments, you can spend time focusing on the best bits, extracting the bad bits, crying about/sulking about them and then moving on. It also ensures that I cant ever state that life is “good” or “bad” as there is so much variation and diversity and so just as sure as there is a blip around the corner there will be something else to lift me back up again.

I don’t think I am making much sense. Blame it on lack of sleep or something. But it’s making me smile to type this nevertheless so I think I shall post it anyway.

Filled with vigour and enthusiasm (if my physio is reading this I was honest it was just quiet and well hidden enthusiasm) from my big dose of real life yesterday I decided to be much more active today. So when my physio came in in the morning to see if I needed any help we decided to go for a morning walk (I usually wait till the afternoon as my lungs being rather old and cantankerous take that long to wake up properly) and off we set. I talked less which unfortunately demonstrated how much I usually prattle on, as I managed the first stretch with much more ease. We then did the entire left hand side of the ward, then instead of doing the other stretch, I decided to do a few step-up-step-downs to work some other muscles, managing four, yay! The comedy walking is going really well too, I can now do several steps in a row on my tiptoes and pretend I am a prima ballerina for 10 seconds.

This afternoon, a lovely friend N arrived armed with bags of shoes. This was a fab idea concocted when my mum and two friends were sitting chatting to me, they are all members of Emily’s Angels, and we were discussing how I was going to find appropriate footwear. On discussing sizes, N and I realised (with the help of holding up feet together in a slightly bizarre cult-like footshake) that we are the same size, so the brilliant idea hit them for N to be my personal shopper, to stick to strict criteria (which are very complex – “suitable for walking in” and “with pink on”…actually scrap the first one, the latter was the only one of prime importance) and bring different styles for me to try, then take back what is not required. Not only ingenious (well done ladies smart thinking) but also made me feel somewhat like J Lo, as surely only she would choose her personal shopper on the premise that she has the same sized feet as her necessary for purchase of footwear.

First excursion brought back a widely varying selection of styles, all of which were also cooed over by several passing members of staff, and I decided that actually I really want a trainer style shoe because it made me feel somewhat sporty and athletic (even though I am clearly neither of those things). Also I road tested this pair with my physio in training session no.2 of the day (YAY!) and they were fab to walk in. With this in mind we narrowed it down to one possible and N set off again to seek further comparisons, resulting in what I think will turn out to be the shoes, the winning factor being the cerise laces which are just soooo pretty! Have decided that I will need leg warmers, not because I have in mind a certain sparkly pink pair I have seen, but because I am worried about my legs being cold. Honest. So outfit nearly sorted, accessories almost selected and ready...just the tiny detail of lung reinflation to go then! 11 days and counting!

Oh yes, and lung wise (less exciting) another good day, I didn’t have an X-ray today (day off, time for another yay) but we are hopeful and confident that the lung is stably floating in its “3/4 inflated but not any more is far too much effort” position or heading in an upwards direction. My inflammation markers are at last on their way down (which makes me wiggle with glee) but they are adding in an antifungal just in case, so I am now on pretty much everything I can be on, treating for lungs, bloodstream, bacterial infections and fungal infections – the team are determined not to leave any stone unturned!

Rather exciting day today, after a satisfactory X-ray yesterday which showed my right lung has paused in its slow dance up and down my chest cavity, we made the quick decision to pounce on this opportunity, and after my 2pm IVs we escaped…and I went home for the afternoon.

It’s funny because technically I didn’t do anything different, I lay around, only on a sofa at my parents, (and later my very own pink bed which I was so so so so happy about) and had things brought to me and ate food and lay about a bit more, but oh my goodness that feeling of being at home, it was just bliss. It is a tricky thing, talking myself into a day out, because as much as half of me is desperate to get home for a bit, the other half is frightened, what if my lung suddenly decides to fall down? There aren't nurses and doctors everywhere, what if I get too tired and puffy? The hospital is safe, suddenly home doesn't seem so. Credit to my mother and A who conveniently ignored all of my hissy fits this morning (the phone calls which when they were asking about timings etc I was pouting and saying through naughty clenched teeth “I don’t like anything” in the most agreeable manner) and instead continued with arrangements to have me brought home, the back of the car loaded up with pink pillows so travelling just like any princess ought to.

After resting at my parents for a while, A and I decided to go home. I must admit I half didn’t want to. The last time I left the house, I was on a stretcher heading into an ambulance over a month ago, and there is nothing like being right back in the place of an event to bring the memories flooding back. As we pulled up on the driveway and everything looked the same – same roses fading slowly now in the flowerbeds, same next doors cat curled up under next doors car – I felt quite calm, and was pleased to notice how improved my walking was compared to the wedding last week (although I wasn’t wearing 4 inch high heeled sandals this time which may have had something to do with it).

We went inside and I headed straight for the bedroom, as I didn’t go in there after my lung went down. I sat down on the bed, fine. A went to the car, fine. He popped to the kitchen, and I burst into tears. It hit me so fast I didn’t realise at first why, but it was everything, remembering how scared I was as we left in the ambulance, remembering the thought crossing my mind in ICU that I might not ever go home again, and then just relief, relief that this big step is finally here.

After the 30 seconds of tears (I am getting fairly well practiced at stopping myself quickly as it makes it so much harder to breathe it is just silly!) that moment was over, and I just lay on my pink bed taking in how nice it was to be back in my (oops I mean our) room. The sunlight was streaming in through the window and it was just gorgeous! There is so much to appreciate which is right under your nose and yet most of us go looking for stuff which is probably why the search seems never ending, you are just looking in the wrong places. Apparently I cannot articulate the feeling of a big dose of normality so think I will stop trying.

Having thought I would probably manage a few hours, I returned to the hospital tired (well asleep in the back of the car) but happy at 9pm. It has really given me a wake-up as well, and I will be back pushing myself a bit more with things tomorrow. I have been lying around a lot this week, since Harefield I suppose, still doing my daily walks, but in a slight malaise. I will forgive myself slightly as my inflammation markers (which should be below 10) are topping 200 at present, so I’m not 100% (as my mother pointed out with a look of wisdom the other day, why she is not a doctor is beyond me...) but still I could be making more of an effort to help myself and shall start tomorrow. More walking, more physio, onwards and upwards!

Check me out being smiley sitting on my bed with wet but clean hair yay!

Yesterday was another somewhat eventful day on the lung front then...the drain which was inserted the day before was not a particularly nice one. I don’t want to scare anyone who has never had a chest drain before, rest assured I have had quite a few in and previous ones have always been fine (a tad uncomfortable or sore at times but fine) but this one was a little demon. They did warn me this might be the case as it was an anterior drain (in the front of the chest whereas they usually go in the side) and it took an immediate dislike to me doing, well anything which didn’t involve sitting bolt upright really. Consequently I got very little sleep, and it took a hefty whack of IV morphine to finally get on top of the pain.

I went to be X-rayed at midday, and as I sat down noticed the film, and asked the radiographer where the drain was. She started to look for it whilst I cracked some lame joke about having an invisible drain but then the porters whisked me away before we could locate it. When I got back upstairs, the doctors came in and requested to have a look at the sight. Sensing something was up I asked what was going on and they confessed it seems that the drain had come out and they weren’t quite sure why. I am fairly sure I know exactly why – it obviously wasn’t just me that hated said drain, my little lung also decided that this was clearly not on and forced it out of my chest. This has since been verified as the most likely (yet surprising) cause and amuses me greatly - teenylung is going for the iron man title by forcing tubing out of cavity then, my lungs seem to have such personality; that is what keeps me so fond of them!

So 24 hours after insertion, the drain was removed. As it was such a small drain, they merely stuck an airtight plaster over the site, and I had the most blissful 2 hours sleep ever (sleep always feels SO good when you haven’t been able to for so long). On awaking and sitting up to attempt some of the hospital cuisine, I glanced down and nearly fell off the bed when I discovered the plaster had formed large bubble (which had an uncanny resemblance to the millennium dome) signifying that the wound had decided to stay firmly open and leak air out in a stubborn manner. Whilst it was vaguely tempting to see how large this bubble could get (perhaps I could start running bets, size of my fist? My head? Etc) we decided to put a to stop the leakage asap. This wasn’t a huge problem, simply required some stitching, but does of course indicate the persistent airleak is still there. Next job is to sit and wait, hope that the lung does not just continue to slowly go down (as it has done so far) and if so roll up chest drain number 4.

Feeling a tiny bit down today, but I think that is just because it has been a rough few days nicely marked by it being exactly 1 calendar month today since I moved in here (went to A&E on the 19th, was transferred on the 20th). They are trying to give me a very restful day today (just blood cultures to be done to find out what is causing these temps which are still persisting) and so after a bit of sleep and reading trashy mags and stuff (yay!) I shall be back on wiggling form again.

I think I have figured out why so many people are under the false illusion that I am brave. My discovery of this results from the latest fluctuation in the inflatiness of my right lung (ok here’s a game, complete the following: “Emily’s lung has been up and down more than…………” I look forward to reading some of your suggestions!).

Anyway. Things have been getting slightly more uncomfortable every day, and yesterday I could really feel the big fat airpatch sitting fatly on my lung. If I tried to lie down, said airpatch would also put its feet up on my heart, and was generally making itself more and more at home. An Xray revealed that it was indeed getting fatter and so yesterday evening the decision was made to put in chest drain number 3 (or 4? Not quite sure now) which would be a smaller drain (yay!) put in using CT guidance fat airpatch has cleverly surrounded itself with large blood vessels to make everyone’s job that bit harder.

I think the scariest thing about any procedure is actually the anticipation and fear of the unknown. Technically this is the drain to worry about least – it was all carefully planned, to be done calmly with the aid of a CT scanner with no time pressure as it was not done in an emergency as all my previous ones have been. But weirdly all this made me more anxious. Before I have always been so frightened and breathless that I have begged them to put a chest drain in, anything to feel some relief, whereas this time, as they approached me with the trolley, I felt that I wanted to either shout “look over there!” and then roll off the bed and hide behind it (cunning) or behave in a menacing manner so they wouldn’t come any nearer. Somehow the feeling that I could technically opt out of having the procedure made it more frightening, and as a result I may or may not have made a bit of a fuss as they set everything up, sobbing something about it all being too much in the space of 4 weeks. This you see is the proof that I am in fact not brave and what makes it extra amusing is I had been beautifully behaved when they put in the emergency drains (which are the size of hosepipes) whereas this is a nice tiny drain, about the size of a biro and here I was wailing like a banshee. Lovely. Once they actually started, I was absolutely fine, as it was already underway so I could accept that no biting or beating with spoons on my part would change it, and just lie there very tense saying “is it done yet?” every few minutes but other than that behaving rather well. Towards the end of the procedure I apologised profusely for my behaviour and said to the poor man I understood he was doing it all for my own good it’s just the idea of it was quite scary, and remembered to thank him for what he was doing (I always thank staff after any procedure, even blood tests because I doubt they get thanked very often and I think it must be horrible to have to perform unpleasant procedures on people all day even if you know it is for their own good).

Sure enough, when it was all over and I was thanking them, they were all enthusing that I had been a wonderful patient and very brave and it was their pleasure. It suddenly struck me (making me smile which may have looked a little bizarre) that this is the key to my brave façade, and it is all thanks to my drama background. You see I had it hammered into my head at an early age from my drama teacher Ms Heath, that no matter how the performance has gone, the all important bit is the very last number, and it is vital that it goes well with extra sparkle and flair, as that way the audience is left thinking “crikey that was good” because that is the bit which sticks in their minds. It is this “final act” which I put on at the end of the show which is what has everyone fooled thinking I am in fact some brave and courageous person. Although now my secret is out...

It was a normal afternoon, everything was as it should be - mum had arrived armed with magazines and stolen some of my chocolate and in her attempt to eat it hastily so as not to be detected choked on it and spent the next 10 minutes telling me how sore it was much to both of our amusement – and Adam had just arrived, it was about 5.30, so the three of us were sitting idly chit chatting. The phone by my bed rang, it does so sporadically and is rarely actually for me, as people can contact me on my mobile so I don’t tend to give out the number. Normally I would let it ring due to the above reasons, but as my mum was there she picked it up and passed it to me. The nurse told me there was a call and then put it through. “Hi Emily, it’s one of the coordinators at Harefield. Guess why I’m ringing”. I said “no are you serious” and she replied that yes, there were potentially some lungs for me. I just broke down in tears. Mum and Adam were looking at me in fear and I managed to tell them it’s Harefield and through my tears say to the coordinator “I’m so happy” over and over again as I suddenly panicked that she may interpret my tears as those of fear or other negative response.

I passed the phone to my mum as I couldn’t speak and proceeded to weep “I’m so happy” in a slightly melodramatic recipient at the Oscars manner over and over at Adam and the subsequent steady stream of nurses and doctors who appeared excitedly at the window. A blue light ambulance was called and we packed a bag and off we went. I was by this point quite calm – a lot of the staff were in tears.

My mum says I grinned all the way there in the ambulance, and whilst the coordinators words that we had no idea of the quality of the lungs yet so this was all very provisional were firmly in my head, I dared to let myself think of some of the things which I never do, things about the future, which if I concentrated on them regularly I would probably become all despondent as it is much healthier to concentrate on the now. We arrived smoothly, and the rest of the family congregated with remarkable speed. Bloods, washing and prepping and obs were done and the gown was donned. I signed the consent form which lists the possible risks (it always amuses me they list “chipping of teeth” due to ventilator next to “death” as if they are vaguely in the same category) and then it was a question of sitting and waiting. My lovely coordinator was wearing very distinctive high heels so we could hear her approaching every time she came in the room, and we would all fall silent as the footsteps got louder. At 10pm she came in and walked over to the bed, and I knew straight away it wasn’t good. What I hadn’t prepared myself for is that it wasn’t the organs, it was me. My temperature was up and my blood results were fairly high, the combination of both indicated infection and the decision was it would be too risky to undergo the operation.

Disappointment is not the word, and in possibly the least brave fashion ever I wept like a baby. I begged her to take my temperature again and it had come down slightly. She reported such to the surgeons but as time went on it became clear that they still felt this was too risky. I cannot fault any of the team, they had everyone and anyone on the phone studying all my results, they were all desperate for this to happen for me. At about 11.30 we got the news that there was a problem with one of the lungs and so the person who had been brought in as back up for single lung would be the recipient. This news actually lifted my spirits, as it was obviously never going to be my time. By this time I had composed myself enough to remember my manners and thanked the team for doing everything they could and for calling me in. The problem with the lungs meant the backup for double also went home disappointed, and as weird fate would have it it is someone I know, and I have spoken to her since and both of us are heading forwards with our heads held high, stay strong and smiley chickie.

They were intending on me staying there and returning to the Brompton today but I couldn’t bear the thought of waking up at Harefield with my tired old lungs still so bless them they got an ambulance which picked us up at 4am and we finally got to bed around 6.

Today I am feeling much brighter. Despite none of us having any sleep I dragged my poor mum and A out this morning to go shopping, as clearly what was needed was to by something frivolous, pink and expensive (which is what I did, it’s a gorgeous chunky charm necklace and I love it). This was the dress rehearsal I have been desperate for, it shows me that this isn’t just theoretical, this is real, and actually could happen for me. “Dry runs” as they are known in America happen to a great many people; one in three calls for lungs are false alarms, and so we knew this was highly likely. I got to see what happens, and more importantly test my own feelings, and I am so more than ready for this. After over 17 months of nothing, this is a wonderful beacon which makes it all the more real for me. More importantly than that, yesterday a family lost a loved one, and at a time of great tragedy decided to donate their organs. Compared to anything I am feeling these are the people who should be in our thoughts right now, and they have given me renewed hope that my chance will come.

Yesterday was a puffy day. Puffy days, when I have them, seem to follow a pretty regular pattern. The day starts off fine, where I get out of bed ok, heartrate jumping to about 160 but that isnt unusual, lungs feel ok, so I start moving about in probably an overenthusiastic and unnecessary manner. As the morning progresses, I get a sort of tightening across my chest, it feels a bit like a vice is being wound tighter and tighter, and I get more and more breathless. By lunchtime, I didnt even have enough breath to swallow my painkillers, which was vaguely ironic as they clearly would have helped ease the muscle ache which was setting in. The physio came round and was so sweet, she looked really sad because usually they would be able to help by using a machine such as the Bird or something to give me a break, but as my lung resembles a colander that isn't an option. If you are running and getting exhausted, you stop, but you cant stop breathing, so you just have to ride it out.

Not being able to breathe, even when you are lying completely still is not a nice feeling, and I sometimes get a bit panicky and/or upset, which is completely ludicrous and quite possibly the most counterproductive thing I could do, except for getting up for a brisk jog or something. Deciding this was rediculous, I did what most people would do when they are feeling a bit tender, I called my mum and she came whizzing up and "carried me around on a cushion a lot" (that's what she always says she will do when I am poorly, havent quite worked out what the medicinal implications are supposed to be but it sounds like fun) and of course my breathing improved over time and by the evening I felt much better.

I have this strange sort of logic worked out in my head that when I have a really bad day like that, it means that it is all the more likely tomorrow will be a good day. Probability experts please dont correct me on that one, I like my random mathematical interpretation, and anyway it turns out I was right. Today has been much better, with a mild breathlessness episode around midday, but I slept it off, and then I went for a walk with the physio and walked the ENTIRE LENGTH OF THE WARD (yes I am shouting that as I am rather chuffed). It was just the most fantastic boost for my morale, and it makes September 3rd seem much more achievable. And it wasn't merely walking, it was walking in a comical manner, so as to stretch and reawaken various muscles which have withered away to nothing over the weeks, including walking on tiptoes, lifting my knees up and attempting to kick my own backside. I should be paid for my entertainment value really. The moral of the story folks is this: when it seems as if the day couldnt get any worse, plough through it and focus on the fact that it means tomorrow must be a good day!

Ooh two blogs this weekend, check me out! A brief look back at the last few weeks…in true drama queen style, I have gone from being in intensive care with a slim chance of surviving the next 24 hours, to 21 days later, sitting at my gorgeous friends wedding, in a luscious dress with a fascinator (yes that is its real name and yes I do love that word) in my hair. And those 21 days have not been very straightforward either, I have been completely bewildered as to where I am now, so if you have managed to follow my progress and understand it all big giant smartie award to you!

So, where am I now exactly? (I don’t mean location wise, as by looking around my room even I can deduce that I am still in hospital, I mean health-wise.) This is a rather hard question to answer. Following previous pnuemothoraces, I have had operations to remove the damaged part of the lung which has popped, and then to stick the rest to the lining to try and prevent further collapses. However this time I was not well enough, therefore the cyst is still there. However the good news is, having a chest drain in makes the lung lining all angry and inflamed, which in turn causes the lung to stick a bit anyway, so half of the procedure has sort of been done. Kind of as if I have had it stuck, but done by some cowboy in a slapdash fashion, instead of by a surgeon.

Because no new drain was put in, I still have a nice big patch of air in front of the top of my lung. This poses two potential problems, one that pressure might increase causing it to come down again, and two that it reduces my lung capacity as my lung is still partially collapsed. However the drain has been out for over 48 hours now suggesting that further collapse from Monday’s episode is very unlikely, yay! Plus, the good news about it being the top of my lung which is all deflatey is that it was pretty much useless in the first place, so I wont really miss it that much as it was merely lounging around on a sofa eating crisps instead of doing any work even before it collapsed. The patch of air sitting on top of my lung should slowly resolve itself anyway, this would probably take several weeks, and there is a chance it won’t do so, we shall just have to wait and see.

The surgeon came round this morning and listened to my chest, and was pleased with what she heard. She said that my left and right bases now sound the same, meaning my right base must be pretty much fully inflated and we already know from the CT scan that it is well stuck. This is fantabulous news, as it is my bases which are the healthy(est) bits of lung, so if I was going to specify a bit of lung I wanted to be safe, it would be the base lobe. So hurrah for that!

Due to large patch of air remaining and frankly a huge fear on my part, integration back home will be a steady and strongly supported one. I am heading back to Foulis later today as I still have the strength of a sparrow – yesterday was a bit of an eye-opener, as when I arrived at my parents, I really struggled stepping onto the tiny step they have at their front door – plus cannot talk for nearly as long as I would like, a travesty I am sure you would all agree. I want to start working my way towards returning home, perhaps for the odd day at first, then overnight, and so on. Oh and of course, getting my walking back on track so I can at least walk some of the track on September 3rd! Essentially it is a matter of taking it one day at a time, and focusing on the good and not the bad, the hopeful and not the what-ifs, but then again, that’s what life is all about.

The quickest of quick updates as I am soooo tired but firstly and most importantly I had the best day ever today as I MADE IT to the wedding! YAAAAAAAAAAAAY! And here is a picture of me and the beautiful radiant bride as proof.
It was a gorgeous ceremony, and Mrs W, I wish you every future happiness as you so deserve it my special friend.

Sorry for the lack of updates but I have been back on HDU but this was predominantly a safety precaution. The last couple of days have been a tad draining (worst pun in the history of mankind I do apologise) but the short version is, I had my 4th pneumo which this time was at the front of the lung. Having realised the drain (at the back of the lung) was not only failing miserably at doing its job (not really its fault as it wasn’t in the right place) but was also wedged precariously right near a large vessel (a bit more its fault) they decided the clear and obvious answer to all my lung collapsing problems would be to have no drain at all. Weirdly I could not quite see this and so in a mature and calm manner I explained my concerns to the surgeon. Or I may have sobbed pathetically “go away you aren’t taking it out” at him, but that’s a minor detail. Quite a few hours of arguing and a LOT of discussion later (where they did in fact explain more fully that this was the only option as you cant put a drain in when the lung is technically up, we would have to wait for it to fall down again to put another one in anyway) as a compromise for my state of mind, we agreed to clamp the drain for 24 hours as if it all went wrong at least all they had to do was unclamp. It made me feel better anyway.

24 hours later with one lung hanging on with grim determination, out came the drain. It was then a question of wait and see, and happily, my lung behaved in an impeccable manner, so when the surgeon came in at 10am this morning to review my Xray (taken an hour previously) she confirmed that she felt it was safe for me to go. Hair, makeup and wardrobe arrived (aka my mum and sister) and then armed with a letter, which dictated exactly where my pneumo is situated and basically instructs any paramedic exactly what to do, I set out on my first proper trip away from the hospital. Yes it was scary but it was worth it a million times over and I wouldn’t have missed it for the world.

Why do I ever bother writing “just a quick update” when anyone who knows me knows that will blatantly prove to be untrue!

Having had a lovely quiet weekend, where my lungs were well behaved, and more surprisingly perhaps so was I, I woke up this morning looking forward to gearing up for a week of improvements. I felt a little tight chested so after struggling to move around perched precariously on the arm of a chair (where else when you are surrounded by beds chairs and pillows) to do a nebuliser. As I was doing so I cleared my throat and felt a ping and that same old flood of pain and pressure. Instinct took over, as did fear of a repeat of two weeks ago, and I ran and pulled the emergency chord and then out into the corridor (although not very far as O2 tubing causes comical dog on leash movement at all times). Credit to them every single doctor and nurse came flying. I was struggling quite a bit by this point but was aware that it wasn’t getting any worse, so immediately started apologising to everyone (in between trying to breathe) for pulling the emergency chord which is really a cardiac arrest button and clearly my heart was still beating as I could feel it reverberating all the way from my eardrums to my toes.

So here’s where we stand now. It was another collapse, as I felt the “ping” so that brings me to a grand total of 4 pneumos in just over 2 weeks. Now the good news is, this was unbelievably painful. I know that may not at first sound like good news, but the reason it was so painful is because the air was pushing on the lung trying to force it to collapse, but instead of collapsing with good grace, it is sticking nicely to the lining therefore refused to budge very far at all. That conflict of interest is what caused the pain, so is an excellent sign as we want that lung to stick to prevent huge great ER type dramas as exhibited previously.

The somewhat more disheartening news is that this is a step in the wrong direction. I was put back on suction straight away, will remain so at present, and so am back to being tied to the bed. This was also a major blow to my morale, as it puts an immediate halt on leaving the hospital (at all) until this is resolved, as it is just not safe. I would be lying if I said I have managed to be positive all day.

I had a CT scan, which revealed a large patch of air in front of the lung. The drain is sitting nicely in its own little spot behind the lung. This means it is not being particularly efficient at clearing said new airspace, and so we will be in talks tomorrow with the surgeons about putting in a new drain. This new drain experience will be bittersweet, good because it will be under controlled conditions not a hasty life-saving manoeuvre, but because I am stable, I will be far more aware of it, and it isn’t the most pleasant of things. But still, surely better to have unpleasantness than to be critical, so stop your whinging Em. Plus Lu is staying the night tonight, and we have had a muchos fun night, who says hospitals are no place to have a sleepover!

Ironically, the thing that has cheered me up most and kicked me back into fighting spirit is the following episode. Things have been very stable this evening but obviously the doctors have hammered home to me the importance of reporting any change, even if I think I am being silly. I was sitting up and began to notice a slight pain as I breathed in, and a small but pretty insignificant increase in pressure. Remembering to be adult and forward thinking, I bleeped the nurse, and reported this, congratulating myself in my professional and cautious manner on doing so. About 20 mins later, feeling was still there, so I decided to move off the bed to see if a change of position altered it. In order to do so I leant over to move my bedside table, only to discover I may or may not have positioned it directly onto my suction tube. Since removing large and heavy object from delicate tubing I have noticed a significant improvement, so whilst I am not a doctor, my medical instinct tells me this could perhaps have caused that change in pressure. Who can be sure…

Tonight, exactly two weeks after I was fighting for my life in intensive care, I got dressed in something other than pink PJs, and left the hospital for the first time. We wheeled me down the road, to a gorgeous little Italian restaurant which I have had many a happy meal in, and was my first outing after last years big collapse as well. As we sat down and raised our glasses, I felt very strange indeed. A huge mixture of relief, tears, excitement and fear, of what has happened¸ what could have happened, where I was, where I am now, and of what is still to come.

I have been terribly over excited about this outing and gearing up to it all week, and it really was a perfect evening. My pain was well controlled, and my appetite managed to kick in (funny how that happens when I spot lobster on the menu…) and so brave little me admirably managed three courses (poor father is now probably examining his wallet in a wistful manner wondering quite where my three mouthfuls of everything appetite had gone to!). We had the most gorgeous meal, and it was just so so lovely to be sitting there with my wonderful family. Who are stronger than Mr Strong from Strongland as my mother would say.

I knew I would find it hard afterwards, and I have done since being back. I think it is the build up and adrenalin, and of course that slight bit of reintegration into the real world and normality is a reminder of what I have been away from and what I nearly lost. So essentially I am now in a profound but content mood, and decided to blog instead of sitting staring at the wall, which whilst it is a lovely baby blue colour and does have a row of chippings on it which resemble an alligator if I tip my head to one side and squint a lot¸ isn’t the most stimulating of things to be concentrating on!

A number of people have mentioned to me how they find reading my blog a strange experience, as I have a tendency to write about sometimes quite horrific and/or sad things but then will drop in a touch of humour. This has never really struck me as weird before, but on thinking about it I think we (society) often feel that things are either bad therefore sad, or good therefore happy etc. I was talking about this with Abby the other night – I cannot think of a single time in life when you will get a simple stream of matching emotions. For example, at the most joyous of occasions, such as a wedding (not that I have weddings on the brain due to a dear friend of mine getting married in a weeks time!) there will be moments of tears, and touches of sadness amongst all elation and celebration. At a funeral, there will be a moment of laughter as someone recalls a funny memory or story, perhaps shared through tears of heartache.

Life is varied and complex, and for me that brings part of its great beauty. You can be crying with laughter one minute, and laughing through your tears the next, but I think what is important is allowing that and accepting that as part of life. Also viewing it in this way makes it harder for life to knock you down, when you see it as a collection of tiny fragments rather than one great solid slab, so even with huge black clouds everywhere a sliver of sunshine is bound to creep in somewhere. I try to think like that as it makes it easier to face the whole torrent of emotions which sometimes flood at me on an evening such as this, as it seems more natural that whilst I am elated and content to be at this stage compared to a week ago, I also feel a small ache of sadness at what the events represent as far as my health is concerned. Time is running out. And I have said it many times for the sake of media interviews and awareness raising, but of course sadly it isn’t just for effect, it is true. But I have every single chance of being called tonight as I did last night and the night before¸ and will look forward, take one day at a time, and keep concentrating on small goals, such as getting myself better and of course getting across that finish line!

All we can ever do surely is to keep on keep on, and live it and love it to the best of our ability? Oh and please don’t feel bad if you find yourself laughing at something I have written, unless it is at my spelling and/or grammar in which case feel very bad indeed as that is wrong and not at all funny and you should berate yourself entirely.

Click here to see my first outing! Click here to see a photo of the best family in the history of the entire world.

Just a quick update; morning started very well with me managing to eat my entire cooked breakfast (I love the fact that is a good thing) and a nice long walk with the physio being my longest yet and at the fastest pace so far. Shortly after this, I began to get a bit of chest pain and pressure build up and noticed the drain was no longer hissing. Minor panic on my side, and the doctors were nice and calm, came and fiddled about with the drain which obediently started bubbling again. I got a chest Xray which showed that the lung was still fine, however they agreed that it did deflate again a bit when the drain became slightly obstructed as it is still in the position it was originally placed in when the lung was down, therefore now the lung is pretty well up it will bump into it and block it off every now and then (ooh I am so scientific me). I consoled myself by consuming hot chocolate and Christmas cake which had instant and magical cheering up effect (I am my mothers daughter), whilst they went off to have a chat about whether something should be done.

They decided to do a bit of wiggling (of the drain, not of themselves although that would have been more fun for everyone involved) and it all went swimmingly so drain is now slightly adjusted and hissing merrily and I am a tad sore but fine. The best thing I can take from teenytiny collapse is that it was teenytiny, i.e the lung did not throw its hands up in horror at having its drainage site blocked and collapse dramatically on the spot like previous diva behaviour. So it is obviously deciding to stick and play along nicely, yay go lung!

Greetings from the wonderful world that is the CF ward, YAY!! I was transferred back over here yesterday, which is fantastic news. I was absolutely fine on the surgical ward, the staff are lovely and attentive and I was very comfortable, but the fact they felt I was ready to come back over, away from the building with the ICU in it shows that I am definitely making progress.

Whilst I remember, I must just clarify for people’s peace of mind that I am on the active transplant list at the moment. I was briefly taken off when I was too ill to undergo transplant, but am reinstated firmly on and have been for about a week now, so please don’t worry about that those of you who were.

After a complete whirlwind, things are slowly settling into a pattern, which considering it is a fairly stable one (touches all wood in the vicinity and more) is something of a relief to everyone. Obviously as things have improved physically it has hit me more and more mentally what I have just been through, but the only thing you should ever hang on to and savour from experiences like these is that ok yes I went through it but look I am still here, and that just reaffirms how tough my body is. I have been speaking loads to my family too, to fill in the gaps on the first few days which quite frankly were more unrealistic than neighbours in their drama filled capacity. Apparently there were nice glimpses of the real me even at the worst possible moments, when I would do or say something bossy/naughty/cheeky, which was reassuring to everyone. When they leaned over the bed and gently told me they were taking me briefly off suction to move me to a different room I removed my mask and firmly stated “you are NOT”. What a wonderful and cooperative patient I am.

According to Abby I also spent the afternoon in Epsom hospital smiling away confidently with my eyes closed saying “I’m fine now it’s all fine” caked in blood with chest drains and tubes everywhere yet due to the powers of morphine under the false impression I was convincing my friends and family who, credit to them, played along with good grace. They always do this bless them, as I tend to get a tad cross and irrational at monstrosities such as the straw being angled at a slightly awkward degree and therefore berate my mother with intense sulky facial expressions at which she hurriedly apologises over and over again. At least I wasn’t as rude this year as I was last year, when I had the ventilator in and was trying to spell out messages by drawing on my leg, and in my frustration at my mother not being able to comprehend the vague swirley motions wrote “and you call yourself a teacher”. How I earned the nickname “Angel” is quite beyond me, I believe I may have given it to myself at some point and then carried everyone else along in a wave of enthusiasm that perhaps I am some kind of angelic creature. Luckily only my family know better!

You can probably tell by the complete lack of direction in this blog that I am still on quite a lot of painkillers and also didn’t sleep much last night, but it feels good to “talk” as it were, as actual talking is still quite tiring and I am not managing to do quite as much of it as I would like. I have hopefully included a picture of what is obviously the key to my success and apparent 9-life ability – sweetiebobbles. Yay!

If it hasn't worked I think you can see it here: http://i55.photobucket.com/albums/g134/Tinypoppet/sweetiebobbles.jpg

YAY It's me!!!

I am pretty tired but I just wanted to write a proper update and more importantly say a HUGE thank you to everyone who has sent messages of support to me and my family, we have all been overwhelmed by the hundreds that have been pouring in. It is all a tad surreal, I can’t quite believe that this time last week I was in ICU, well, fighting for my life really. But you can't kick a small blonde-and-pink thing down for long, and I am doing miles better than anyone (myself included) could have predicted.

I woke up Wednesday morning feeling a tad sore and quite tired but put this down to the Salsa lesson which I may or may not have attended the night previous (which incidentally was tremendous fun and I highly recommend it). Had a lovely day lounging around in the garden with my sister and mum, but at about 10pm that evening the chest pain was growing worse and I just knew something wasn’t quite right. I rang the brompton who said considering my past experiences with pneumothoraxes (not to mention the fact I cant seem to do anything in a sensible or restrained manner) I needed to get to my local A&E to get Xrayed. On beginning to get dressed the pain accumulated rapidly so I phoned an ambulance, leaving a man to choose my outfit and pack my bag, which sadly resulted in me a) turning up in a little miss naughty PJ top and white floaty skirt, and b) the bag containing a couple of skimpy tops, one which my sister had worn clubbing a month or two previous. Hmm!

The X-ray confirmed that it was a pneumothorax, but a minor one, approximately 15% collapse. I was taken up to the ward about 2am and was reviewed the next morning. Due to glorious red tape, my pending transfer to the Brompton was in jeaopardy as I was…too well. They wouldnt take me by Ambulance unless I was “critical” (this should have been my warning, as it was said within earshot of my lungs) so I was very cross and planning on escaping via car to the Brompton until a nurse there strongly advised me not to, which I graciously consented to and sat there with a pouty face like a spoilt 5 year old at not getting my own way. At this point dinner was served, not quite sure what it was attempting to be, but it clearly failed, so I sent my mum off in search of edible food as my cousin was with me. My lung chose this 5 minutes my mum had left the room to finally stick two fingers up at the “non critical” status and collapse in a beautifully spectacular fashion, with both a full pneumothorax (all the air leaked out forcing the lung right down) and also a haemothorax (huge scary bleeding from mouth and chest cavity) ensuring that absolutely no one could say this didn’t qualify for blue light treatment. My poor mum got back to find me fading fast as my sats dropped to 60% and the docs cutting off my clothes (which I still haven’t forgiven them for as I loved that white skirt). I don’t really remember much except realizing that I was able to breathe again and just feeling the most incredible gratitude and relief that I was still here.

I was transferred to the brompton that evening, and settled down in the room opposite the nurses’ station, my mum staying with me again as I was still very unstable. Thinking that 2 collapses in 24 hours was quite enough drama I was very unaware that the doctor was actually quite concerned that something wasn’t quite right, and then sure enough at 5am, my lung went again, this time with a tension pneumothorax despite there already being one operative chest drain in place. They fought hard to get another drain in but by this time my CO2 levels were rising dangerously high. There is a machine which can help rebalance the CO2 levels called a bi-pap but they couldn’t use this on me as my lung was down, so essentially there was nothing more they could do. I am thankfully very unaware of most of the goings on, it is my poor family who had to endure being phoned in the early hours of the morning and told to get there asap. I wont try to put into words the respect and awe I have for my amazing family as I can’t. We were told the next 24 hours were critical and I was taken down to ICU. I think the high CO2 levels were acting as a kind of anesthetic as I was genuinely calm and felt very peaceful, and couldn’t quite believe what I was being told, expect for the odd symptom such as being unable to feel my arms and legs which showed my body was shutting down.

I said to my family “it’s not over till it’s over” as that is what I firmly believe, and then we set off to ICU to see what happened. 24 hours later, things were improving beyond all expectation. The team that are looking after me are amazing, they went and continue to go beyond the call of duty, and have been amazingly supportive to my family as well. The progress as you can see, kindly updated by my sisters, has been rather better than any of us could have hoped. It’s funny because when it a moment of crisis, you go into survival mode, and it’s only afterwards it has really hit me that that is rather a lot for a small person to get up to in a few days.

Sorry for the huge lengthy entry, writing it really helps me get my head round it all too, but essentially, I am now sitting up in a side room in pink PJs with pretty pink toenails and feeling very tired and sore and relieved. The next bit will probably be very slow, it is a case of taking each day as it comes and watching the lung to see when, if at all, the drain might come out. Huge abundance of love to each and every shiny star that has been cheering me on - the nurses have commented on how lucky and spoilt I am and whilst I would desperately love to disagree I know that would be lying!

Hey everyone, it's Lucy this time (Em's other sister),

I was at the hospital last night and she's doing so much better, and wanted to update everyone on a few things. Yesterday was a really good day, with more champion exercise biking, eating lots more solids (although her body isnt crazy about them right now), and she just looks so much more herself, with rosier cheeks and a chatty disposition.

A highlight of the day was Mr Richard Madeley (of Richard & Judy fame) dropping by for a spontaneous visit. He really brightened up Em's day (not to mention everyone else on the ward) and was his genuine and caring as always. Another high point was the lovely new and very pink pajamas bought by a certain star mother.

Em also wanted me to thank you all for your kind wishes, all the cards she's received as well as lovely emails and blog responses which I have been printing and passing on to her. So a huge thankyou to everyone.

Exciting news is that the surgeons are so impressed with her progress, they are aiming to take her off suction for the first time today, in order to see if the lung can support itself. This suggests they are pretty confident that it will, and if they are satisfied she will be put on a heimlich drain (a sort of minature chest drain with a small bag). These are giant leaps considering how dark everything looked only days ago. I'm convinced has something to do with all the positive thoughts and wishes being sent Em's way, and a lot to do with the fact that she's a feisty little warrior. I'll update you on the drain situation asap.

Thanks again to everyone, xxx

Another update from Abby here, a lot of improvement today not only has Emy given us more smiles and conversation today but she was even on the exercise bike!!! :)

Afterwards she was of course very tired and had a much deserved rest. Her appetite today has also increased, she has had several meals and by the evening was enjoying sorbet with sweetie bobbles!!

She has been on two drains but today one was clamped which is another step forward. She seemed very positive when I left and was overall a lot brighter and more herself today.

Thanks again for the lovely comments, we are going to get them printed up and to her a.s.a.p!

This is Abby again, just to update: Emy had a stable night and has now been in a fairly stable condition all day. This afternoon she was transferred from intensive care to high dependency where she is doing well. She is still smiling and being brilliant and this evening was actually sitting up and eating soup, a huge step considering the last few days.

Thank you everyone who posted lovely comments on the last entry, I will report them back to Emy she is very pleased to know people are thinking of her. As in the last post visiting is still very restricted so only the family is up at the moment but i will pass on messages left on here.

Will update again a.s.a.p as Emy is very keen to keep everyone informed!

This is Abby, Emily's youngest sister. As some of you may know Emily's lung collapsed on Wednesday night and has collapsed again since then. She was rushed into Epsom hospital on Weds and has gone from there to Foulis, to Intensive care in the brompton.

She is now stable, but very unwell. We have had some very kind messages asking if people can help but unfortunately all anyone can do at the moment is keep their fingers crossed for her. My parents are staying nearby but even they are not allowed to stay with her so visiting is unwise as it's on strict terms while shes in intensive care.

As always, Em is being a complete star and is very strong she has given us smiles many times through it all. She is calm at the moment and just trying to keep fighting though she's very tired.

Thank you for all your positive thoughts, Em knows everyone is rooting for her and is doing her best to keep going. I will update as soon as there is news.

Today, A and I went to sainsburys. It was fairly empty in there, which always makes me a tad more self conscious anyway for the strange logic that I feel if there are less people around the people that are there are more likely to hone in on me. Having selected all the necessities – trifle, hundreds and thousands (known to me as sweetiebobbles but I am trying to get out of that habit after asking A to buy me some more and he went and asked a sales assistant if they stocked sweetiebobbles which naturally was met with some baffled amusement and I was in serious trouble) ice-cream etc, we were queuing up at the till. As we placed our basket, the lady asked cheerfully how we were so we both smiled and exchanged plesentaries. I was absent-mindedly reading the cigarette packets (not much else to look at) when I heard the lady say “what’s wrong with her?” I turned to see who she meant and realised she was asking about me. Slightly stunned, A said “pardon?” and she said “is she ok” to which he turned to me somewhat thrown and said “are you ok?” it was like something out of a Monty Python sketch. I was actually pretty embarrassed and said loudly “yes I’m fine I am waiting for a transplant” which a) was a contradiction in one sentence and b)was slightly unnecessary but did shut the woman up.

Usually I would laugh about these things, but for some reason this did quite get to me this evening. I just felt a little sad of the reminder that of course people will wonder “what’s wrong with her” when they see me, unless that is of course they are used to people wearing plastic tubing up their nostrils.

I have just read Gloria Hunniford’s book “Next to you - Caron’s courage “ about her daughter’s battle to cancer, which she eventually lost. Obviously a completely different scenario to my current situation, but it was interesting reading about the way she dealt and lived with her illness. One thing that particularly struck me was her determination to keep it a secret. Her mother muses over various reasons, all of which sound highly plausible to me as they are similar to my own drive for coping with transplant and things the way I do, which is to tell anyone and everyone about it. I think it is almost me trying to trip up my illness and say “ha, see you can’t create a taboo or an underlying fear, this is all out in the open and just a part of my life”. So I talk about it. A lot I suppose, but interestingly for similar reasons as one might hide it it seems, being that I don’t want it to become a big thing. Well it is a big thing (stupid comment) but bigger than it has to be. Obviously the hiding it option was rather irradicated when I started wearing O2 24/7, but I think that is why I push myself, wear O2 on TV and go to pubs and things, it’s almost like that behaviourist therapy which resulted in a psychologist taking a patient of his who had an irrational fear of cars, locking her in the boot and driving around for a couple of hours until her hysteria had died down. Perhaps not very ethical, but it worked.

There doesn’t appear to be any point to this blog, more just I needed to vent and spill my thoughts, which would in fact be the point of a blog then. Oh be quiet Em.

It is National Transplant Week!

And oh my goodness has it started with a bang! We marked the launch by attending a function at the House of Lords. Prior to going in, both Emma and I were interviewed by ITV (which was shown last night but I missed it) speaking about the campaign. We then went in the entrance just next to the Sovereign's Gate, so near enough to listen to several speeches about Transplant and organ donation, one of which was given by me. My lungs were really not in a cooperative mood that night, and I struggled for breath on several occasions. Luckily Emma appears to be able to read my mind and was able to smoothly glide in wherever necessary and allow me to regain my breath. It all went really well and we got a huge round of applause, as well as some tears. I hate making people sad, but it does mean that I have managed to get the message across so I have to take it as a good thing. BBC article went up at the weekend, can be seen here should you want to read it.

Then today was a whole day of media madness. It began with a 5.15 pickup, (I had forgotten such a time existed) to go to GMTV for two interviews. We did the first spot at 6.45 and then a second at 8.10. Both seemed to go ok, I was nervous but just about managed to babble coherently! I have never minded the feeling of nerves, but now my lungs are teenywee, my heart tends to go a bit doolally whenever I am nervous/stressed/angry and cause me to loose my breath. I got away with it at GMTV, but we then went over to ITV news (where I curled up on the sofa and promptly fell asleep).

We walked into the studio with about two minutes to go till going live, and I sat down and lost my breath. Had a slight panic as I couldn't get it back, and they were counting down "40 seconds" etc till we went live, but the correspondant was lovely, and we decided to just go for it and hope that I could get through it which I did, yay! Whilst I am annoyed at myself for panicking for a minute before pulling myself together, I am rather proud of my little lungs, and just glad that I got to do all three, as the amount of coverage and awareness generated from that is fantastic. And of course thanks to Denzel the wheelchair, my 02 cylinders and my travel concentrator, I managed to look like a Mariah Carey style diva, only with less lillies, more oxygen...

Just stopping by to confirm that lack of blogging this week is due to gorgeous weather, wonderful friends and family and muchly resting!

I am being nice and careful ready for the next two weeks, on Thursday Emmie and I are heading to the House of Lords (erk) to help launch National Transplant week, which runs from the 9th to the 15th July (I may or may not have already blogged as such but never mind!)

Last night Em and Brad treated me and my clever youngest sister who has just finished her GCSEs to an evening at Hampton Court where the flower show opening night was occuring. It was a really gorgeous evening, so incredibly warm, even at 7pm when we arrived. Em and I both had wheelchairs (me in faithful Denzel, Em in a hired chair) which made things a) more relaxed and easier for the two of us and b) more amusing as our poor "porters" attempted not to hurtle us out as we encountered various bumps and steps en route.

There were some gorgeous displays, including a beautiful carribbean one, which I may or may not have insulted by calling to Em "not worth going in there, there's just sand" meaning that the chair would get wedged (as mine did and I thought I may have to live there permanently) except the creators overheard me and were a tad miffed I think as they had put slightly more thought into it than "let's just dump sand here" !

After browsing, we settled down to our picnic and champagne, then watched the fireworks to finish off a truly spectacular evening. I shall put some pics up on here asap.

Am heading into the garden now (gorgeous garden I love it so) to settle down under a tree with a good book. YAY for the summer!

photos now included, yay!