My life on a plate! A place where I get to waffle on about anything and everything, and hopefully raise some awareness about Cystic Fibrosis and organ donation on the way.
Sunday, June 25, 2006
Let's have a pinkandspangly post!
To start it off in a nothing-but-positive manner, I shall include a picture of joy - well if you ignore my feet that is, but it is a pic of my gorgeous shoes (with sparkly charms on and everything) and the hem of my skirt (with sequins and everything).
So that is clearly one exciting thing. Perhaps even more exciting than that is what happened on Friday, when I was feeling oh so down and puffy. My mum was round helping me wash my hair when the phone rang. As she went off to get it, I quickly reminded her to say that I am "busy" not "in the bath" as she has a horrible habit of absentmindedly telling that to strangers, and I heard her pick up the phone and ask who was calling. This was followed by a prolonged silence on her part, and then "hang on let me just find the cordless phone to take her". My heart started pounding as my immediate thought was it must be my transplant centre, why else would they insist on speaking to me. She brought the phone through mouthing "you want to take this!" with a delighted grin on her face so puzzled I took the phone. It was cosmopolitan magazine, I have been nominated by my sister for an award and have gone through to the final few. True to form, I started crying predominantly because I couldnt believe my sister had a)done this and b)kept quiet about it. Handily, my mother started crying as well so I couldnt even pass the phone to her, so I pulled myself together pretty quick.
As many of you know already I have the best family in the world ever but this really does mean a lot. I shant go on about it as I have a feeling that she reads this blog and takes praise worse than I do, but suffice to say it really touched me.
Next wonderful and spangly thing is my mum's leaving do, which was last night, was a great success. Loads of people were there to celebrate the entity that is my mother, and she cried sporadically throughout the evening, which is a good sign (she cried before she even entered the hall which is fairly predictable for her and a sign of joy not sadness). So big YAY for all of those things! I am ignoring lungs and health for this post but will merely add that I am at present still home (another yay) not Bromptoning encore en fois. Am off to admire my shoes some more!
Just a quick update and small apology really - I know I am being really awful at replying to texts and emails at the moment, so sorry all you lovely friends who are contacting me only to hear nothing! I am feeling really quite rough, which is quite disheartening as true to my 5 year old nature, I got terribly over excited about being released and of course immediately assumed I would be back to normal. Unfortunately (but hardly surprisingly) I am not, and not only that but I appear to be back where I was when admitted, lying in bed puffing and panting with a rather painful ribcage and back, and back on my O2 mask. Humph. I would swear but princesses never swear.
The hospital think I need to come back in, I am not convinced, so we have compromised, they have doubled my steroids, and I can stay out for tomorrow - which is what I really wanted as it is my mother's leaving fitznells gathering and there is no way I'm not going to be there - and then I have to ring the ward sunday and report on how I am feeling.
As those of you who know me can imagine, I have that pouty sulky face on which I sport when someone forgets to feed me grapes or carry me around on a cushion or similar. I think the trouble is that my muscles are all just so tired from the effort of breathing. And you know when you sprain your ankle or something you arent supposed to put any pressure on it? Well I cant just not breathe to give my chest a break, which is probably where the catch twenty-two situation comes in.
Anyway am stopping moaning and getting a grip. And more importantly a snooze. Ooh, good news is that I put our Emily's Angels target up to £3000 and we crossed it straight away! Plus it is nice and sunny out which HAS to make you smile doesnt it?!
The team swooped in this morning, glanced at me and agreed that I am indeed safe to be released back into society. I will finish my IVs at home, but have to come back up to clinic next friday so they can check that I am well enough to stop them. I can't wait to get home to own bed, good food, and my man and my family. Bliss!
Today has been rediculously busy as we went up on community newswire (which is a National press feed so we are thrilled to be on there!) yesterday afternoon, so we have already been receiving phonecalls from various Media areas who would like to cover our campaign. A big hurray moment, as my mum would say. At 8.30 we had an interview with BBC radio Bristol, and we have been doing and setting up various other interviews all morning.
I am feeling rather tired but incredibly smiley, as this looks like it is going to be a good high profile month for organ donation, and even better it looks like our campaign will feature strongly. So YAY for spreading the word and raising awareness. National Transplant Week is 9 - 15th July so if you havent bought your T-shirt yet you can do so now by clicking here and wear it that week with pride!
It's day 5 of my rest and recoup (coupled with some IVs to batter whatever is wreaking havoc), and I am doing well - yay! Breathlessness is muchly improved, as is walking ability, due to a rather good techique taught to me by the physio, which involves pursing your lips as you breathe out (splints the airways open, I visualise lots of tiny matchstick scaffolding-type poles for some reason).
I progressed so rapidly at first that they were talking about discharge "after the weekend" on Friday. Sadly I took this to be a promise of release today, when in fact it turns out that they want to review me on Wednesday, which is ward round day, when all the doctors come round, some donning their white coats specially for the occasion, and stare at you in unison. Technically Wednesday is after the weekend, so I suppose they didn't lie to me as such.
Yesterday I escaped for an hour in the afternoon and was wheeled down the road in search of a purchase. I feel that as inpatients we should be given an inner london allowance, similar to that which teachers get, as shopping whilst in a hospital situated on the Kings Road is not good for my bank balance. To my delight and sheer unadulterated joy, I found a full length deep pink skirt with sequins at the bottom which of course I had to buy as it would have been foolish and silly not to. My nurse said retail therapy beats IV therapy and I have to say I am inclined to agree!
My lungs have been behaving less and less well in the last couple of days, and yesterday, when I attempted to get my cereal and a cup of tea for breakfast and ended up sitting on the floor in breathless tears - this reaction incidentally always amuses me, as I seem to get tearful when I cant breathe which is possibly the least constructive move ever as then I cant breathe even more, well done Em - I decided it was probably time to ring the hospital.
They had decided to start Introvenous antibiotics on Monday but after an hour of supressed expletives and still no veins allowing access, we gave up and I went home. Still seem to be going downhill so I am heading in for a little rest. Am hoping to have internet access in there but if I don't, that's where I am!
It was a beautiful sunny day like today. I had been in London in my CF ambassador role at a meeting the day before so this was definitely going to be a rest day. I decided to embrace the summer with open arms and put on a sundress, a nice new one, but hey if you save these things for special occasions you end up only wearing them twice, nice clothes are there to be worn.
Rather typically, I was sitting at the computer when my lung collapsed. There was no huge coughing fit, I merely cleared my throat and felt what I can only describe as a similar “ping” to when the elastic on cheap underwear goes (have just betrayed a student secret of cheap undiebuying oops).
Enough of underwear…I felt a small ping and my heart started pounding. Now I am not psychic, I have never claimed to be, and I do not understand these things, but what happened next to this day doesn’t really make sense. I had no other sensations at this point but I leapt off my chair and walked quickly to Claire (my oxygen machine) and turned her up to the maximum 5 litre flow. I then grabbed the phone, realised I was still connected to the bloody internet¸ disconnected and dialled 999. Whilst doing this I opened the front door got outside and shouted “fire!” (absurdly following advice from some cheesy teen magazine advising if you are being assaulted to shout fire as people are more likely to come to your aid – who says magazines don’t teach us anything.) it was only at this point I really began gasping for breath. So the inexplicable part remains, how did I know what was about to happen therefore what to do? I had previously had a collapsed lung but it was a completely different experience and felt nothing like this, so experience would have fooled me further. Personally I believe it is an innate survival instinct which kicked in, but for whatever reason I had managed to get outside before my breath disappeared completely and I was forced onto my knees.
My next door neighbour was at my side in seconds closely followed by two other men. Amusingly (well I found it so, even in my breathless state) having shouted “fire” it turns out the latter two were firemen. My neighbour took the phone from me as I couldn’t speak enough to be understood by the operator and explained as much as he could. I managed to get them to understand the world “pneumothorax” (a remarkable achievement considering the volume of my speech and the chaos at the time) and the ambulance was on its way. One of the firemen sat and held my hand till the ambulance came. I think the only thing I said to him was “please don’t let me die”.
That was the beginning of my biggest challenge yet. My lung had obviously had quite enough, as even after surgery, stapling, a day on a ventilator to allow it to recover, the tear refused to heal, and the lung still was not inflating in an agreeable manner. Because it would collapse like an inebriated teenager unaided, I spent 6 weeks with a suction pump attached to me during which time I was attached to the wall which was not fun, I could literally go no further than the end of my bed.
Never one to do things by halves I also decided to get a couple of infections to spice things up a bit and required the odd blood transfusion and once a litre of fluids squeezed in extremely quickly by a nice doctor when my heart was dancing around at dangerously high levels. I spent a month in High Dependency unit, where it is customary to spend 24 hours and my weight plummeted to 6 stone (I have never liked the waif look.)
At first everyone was confident the lung just needed time to mend. Then as the weeks progressed and I was still on suction to hold the lung up, confidence dwindled. There was talk of me staying in till after my transplant which filled me with a quiet despair. After 6 weeks of being stuck to the wall I finally came off suction. Prior to this I had been moved to a side room, as things were stabilizing, which was an oddly daunting experience as in HDU there is always a nurse with you and suddenly I was alone for the first time in over a month.
I learned many things from this experience. That even when things look incredibly black, there is still hope. That things are never black and white, even in medicine. But most importantly, that you are stronger than you think, and this gives me a strong reassurance for my recovery post transplant.
Today is a huge celebration. That episode lasted 3 months and I didn’t fully get back to normal till around November time, and look at where I am now. From being told I might be in hospital or have a chest drain in indefinitely to going dancing, sightseeing and generally being a bit loud and naughty.
If you have managed to read the entirety of this post I applaud you as it is ridiculously long, sorry about that. I want to end by suggesting a good deed for the day. A fellow lass waiting for transplant (not CF) suffered a similar collapse in February. She was on a ventilator for weeks and is still in hospital with no signs of an escape (also proof that I should be thankful for the recovery I made). She has a website with a guestbook on it, and her dad prints out the messages for her to read. Please go and leave her a message, about anything and everything, as I cannot tell you what the support from all my friends did for me, particularly on the hardest days. After that go out and enjoy the sunshine! YAY life!
This has been one of the busiest weeks in the history of creation of mankind. Well it has for me anyway. I really am so proud of my little lungs, they are champions really. Last weekend was the hen weekend! Woohoo! It was absolutely fantabulous. Saturday was probably the busiest days of the three, comprising of a bollywood workshop, meal out and a trip to the local club. All of which I attended. The instructor was called Dimple - fantastic name but made me slightly afraid as to me it suggested pole dancing or similar. Anyway she was lovely, a good combination of encouraging and praiseful, (is that a word?) yet pushed us a bit which we needed at times. We wafted around a lot attempting to be both graceful and energetic and it was really good fun. Most definitely provided me with a workout, and I had to switch to my mask half way (felt like a big deal, haven’t worn it out with friends before) but it was either that or pass out blue on the floor which I didn’t think was very in keeping with the bollywood style (no sitting down was not an option, I was having far too much fun.)
At the meal we presented the hen with a box of goodies including all the obligatory tack such as flashing L plate and handcuffs to attach to her person. With our hen still wearing all of these (with great style I must add) we trekked off to the night club, stopping en route for said hen to jump inside a fire engine and pose with a slightly stunned fireman. I must admit at the club I did feel overwhelmingly self conscious with my O2, as, let's face it it isnt something you see every day so people were looking. This was soon relieved by some bloke (nice guy, not the brightest crayon) asking me what it was. The music was loud so I simply gestured at the large word OXYGEN emblazoned on the side to which he paused looking at it then said "Yeah I know, but is it real?" Had me and the girls in stitches for some time afterwards at the thought of someone who overthinks things that much to go and get a fake oxygen cylinder and manage to obtain the tube and nasal specs to take out clubbing with her...
Sunday was a much needed “hangover roast” (thanks Mrs H) and Monday included a trip to the Green fair – a rather hippy event which we hijacked for our own purposes, namely to have a picnic in the sun with champagne, strawberries and scones. Imagine my delight when at the fair I stumbled across a stall selling adult sized fairy costumes! On finding a fushia pink one I was over excited to the extent of temperature induced pink cheeks, and could sadly think of nothing else until I had purchased said garment. I have a good reason anyway, I can wear it for the run in September. Otherwise I would never have bought it, honest...That weekend I also attended the 60th Birthday of a family friend, and instead of presents he requested donations for the CF Trust, raising over £1000. I am not very good at expressing myself in person about these things but I was very touched and it was a great do with muchly dancing due to his mauritian roots.
Being half term week, we took the opportunity to go away for a few days – cue minibreak to Wiltshire to see very special friendies and to stay in a cosy B&B in a room that must had been created especially for me – it was just SO pink and frilly! We had a wonderful couple of days down there, it was gorgeous and sunny which helped and we got out and about a fair bit, again my lungs doing admirably for such a busy time.
Yesterday was my youngest sisters birthday. She is 16 now, and I cant quite believe it. On our 16th birthday, each of us have had a big banner type thing made, which contains photos throughout our childhood with amusing captions creating a story underneath. I remember mine so well, I walked into the classroom of the music school I worked at on a Saturday morning and it was up on a huge silver sheet – obligatory naked baby photo and all. Smallest sister seemed to have a wonderful day yesterday anyway which is what it was all about – still not liking that she is so grown up, although she will of course always be my baby sister, the other one is 18 and living it up at uni and I still think of her as a tiny small! Mind you the two of them are far more grown up than me, I think they just let me pretend I am older therefore wiser to humour me.
Like I say, I am incredibly proud of my little lungs - they did an incredible job and I was able to do far more than I thought I would. Next week marks a year since my lung collapsed in a truly spectacular fashion. I am going to blog about it, so that I can get the memory out of my system (I am already having dreams about it which sounds v daft but am sure that will pass). If someone had told me the schedule for this past week when I was in hospital a year ago, I would have laughed. Well actually I would have breathed at them with a look of sarcasm and humour on my face. So what better way to mark a year later than to have been to 3 parties in a week plus a nightclub?! Just imagine what I'll be like with working lungs...
26 years old, small blonde and smiley. I love life, but was facing a death sentence due to end stage cystic fibrosis. Thanks to the generosity of a stranger I received a life-saving double lung transplant in January 2007.
I am very much a people person and a rather girly girl, loving all things pink! YAY! I enjoy talking, laughing, utilising my love of talking in the form of public speaking and awareness raising, and inventing new words and then being unable to seperate them from real ones in my head.