Friday, July 28, 2006

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!

Wednesday, July 26, 2006

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

Sunday, July 23, 2006

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!

Saturday, July 22, 2006

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!

Friday, July 21, 2006

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.

Monday, July 17, 2006

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.

Monday, July 10, 2006

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...

Tuesday, July 04, 2006

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!