I'm not being listed, which is fab news. Merry Christmas everyone

And the winner is...

... we still don't know. They called me this afternoon, after i emailed and left voicemail messages, to say the consultant needs to speak to me about some specifics, and a future plan of action. Although it was a little like drawing blood from a stone (or from a CFers vein), the co-ordinator did indicate that they are leaning towards me being 'too well' and going on the wait and see list. I will however, know more on Monday, and shall update you then.
On a brighter note, my friends have really shown their true colours over the last week, and have lifted my spirits no end.
***Cheesiness warning ***
True friends are like stars, they shine on the darkest of nights.

Thank goodness i don't bite my nails when nervous.

Transplant assessment

So, i've had my assessment for a double lung transplant- outcome to be announced next week, so tune in for that. It was a very intense week, packed with tests and information. Despite this intensity, i felt as though it was happening to someone else and i was watching through a lens. I never expected to feel as entiely disattached as i have done.
I am lucky in that i have had an enormous amount of support from some very special people, some of whom have been where i am now, some who simply realise i need my friends now more than ever, and are able to get over their own awkwardness to reach me.
I suspect that some people feel very alienated by the whole process, and unsure of what to say. I understand that it is not an easy subject to broach, nor to understand, but a simple 'thinking of you' would mean more to me than you seem to realise.
For those who may have a transplant assessment on the horizon, and those who are not brave enough to speak to me in person, here is some information on transplants, assessments and the whole process:
During my hospital incarceration, i was subjected to a barrage of tests:

• ECG
• 24 hour heart tape
• 24 hour urine collection
• 6 minute walking test
• Abdominal ultrasound
• Chest CT
• Bone scan
• Impedence study (tube up the nose and down the throat, into the osopheagus)
• Psychosocial assessment
• Chest x-ray

There was a great deal of opportunity to ask questions, have conversations and discuss the upcoming events. I had an interesting discussion with the transplant co-ordinators about the shortage of donors, myths surrounding organ donation, different types of donor organs, and the issues which arise from transplants.

A transplant is by no means a cure, it is swapping one set of problems for another. Post transplant, instead of having malfunctioning lungs, i would have a whole new set of issues. Immunosuppresants would need to be tinkered with, kidney function kept an eye on; sunscreen worn at all times to reduce the already raised risk of cancer; lung function and temperature monitored daily to pick up on early signs of rejection, which would need to be treated vigorously and urgently. Immunosuppresants are given to prevent rejection of the transplanted organ, but they also make the transplantee far more susceptible to coughs, colds and other infections, leading to complete hyperchondria in the months of recovery. The transplanted lungs do not have an infinite shelf life- the average survival post transplant is 5 years, but a transplant is about quality not quantity. It should provide a significantly improved quality of life, with the opportunity to do things not now possible with severely damaged lungs.

Before it is even possible to reach this stage of arduous labour during the recovery, it is necessary to be matched with suitable donor organs. This process is not as simple as it may seem, with matches needing to be found for blood group, tissue type, height and weight. There are currently 80 people waiting for donor lungs at Harefield hospital, with less than 30 operations having been done in the last year. Half of all people on the lung transplant waiting list will die waiting for lungs.

I have probably bombarded you with enough information for now, although this post is as much for me as it is for you. I'm trying to make this real.

*Long exhaled breath*

This week has been, well, tough. Emotionally, it has been turbulent. Physically, i have been here there and everywhere. Wednesday saw me visit a distant hospital to meet a completely new team, something which has been in the pipeline for a while- but not overly concerning as i thought i would merely receive a cursory 'going over' and be told to tootle off on my way. Not so.
Apart from being told i am a confusing, bemusing and puzzling patient; i was also told that due to the ferocious and turbulent nature of my decline, a pair of new lungs need to be seriously considered, and sooner rather than later.
After almost falling off my chair (not metaphorically, i do believe i was teetering precariously whilst looking somewhat ghostly), i failed to ask the host of questions i had prepared and silently seethed at just how unprepared i had been.
One thing i had instilled in myself for prior to my visit was the fact that no matter what happened in that room, i would emerge the same person i walked in as. Whether anyone else realises this or not, i've yet to decide.

I feel a pattern emerging...

4:46 am, i feel a theme coming on. God, i hate not being able to sleep. Tonight i have a particularly overactive imagination, and have a sudden urge to put on my red sparkly shoes, and climb back into bed with my glittering toesies poking out of the end! And why not i ask?!
This blog, which was supposed to be my way of outing my emotions, is turning into a ramble about pretty shoes and fairy costumes. Shallow? Me? How very dare you!
I'm currently obsessively planning my 21st birthday party, to be held in January. A while off yet, i know, but it's nice to have something fun and hopeful to hang onto right now- whilst everything else is looking so bleak and arduous. Currently i can submerge myself in a plume of feathers, flapper frivolence, rolling my stockings down and rouging my cheeks; or consider the fact that in a little over two weeks time some doctors i have never met will tell me where my life is to head. I think i'll party for now, and worry about that later.

A late night ramble

I often feel quite lonely, isolated at times. I don't like to talk about my illness to friends, they just accept my daily regimen of being beaten, downing so many tablets i rattle when shaken, and frequent stays in the 'hotel' as they like to call it; but sometimes i wish they could have just a little insight into my life- of what it's like to keep it all in for fear of upsetting those you care about most.
Over the past 12 months my health has deteriorated 'disastorously' (the exact wording used in my hospital notes, which they think i don't sneak a peak at). I have gone from being a largely normal, healthy, happy person with a successful future stretched out ahead of me- to someone who doesn't know what the next day will bring, and doesn't dare to plan for the coming christmas- never mind next year. Some days i simply don't have the energy to leave the house, and people wonder why i don't jump for joy at the thought of participating in a lenghty hike or a muddy music festial. I have watched friends grow more distant as they get on with their lives, family more scared as they try to pretend it's not happening, and doctors more perplexed as i add one complication to another. This decline has culminated in discussion about a double lung transplant- and the chances this might bring. The fact is however, only half of those accepted as ill enough to need such a transplant ever get the chance to recieve one. This country has a chronic shortage of organ donors, leading to the loss of many young lives and the devestation of many others left behind. Perhaps this is why i haven't wanted to be upfront with you about how things have changed; perhaps i don't want to be viewed any differently to how i always have been; perhaps i haven't yet accepted this myself, and therefore am not ready for you to be let into this world.
Thankfully, this is a world you can leave just as quickly as you entered it. For the friends i have, waiting on the kindness of a stranger to allow them to regain their lives, walking away is not this simple.
Please think about joining the organ donor register today, and save people the heartache of having to say goodbye before their time.

http://www.uktransplant.org.uk/ukt/how_to_become_a_donor/registration/consent.jsp

There are many wonderful things going on in my life, and many things i have to look forward to (more of these to follow in further posts); but i felt some of you were owed an explanation, and this- for me at least- is the most painless way of doing it.

New beginnings

I've been trying to begin this blog for ages, but typically, thus far i've only managed to make it look pretty. On a similar note, i'm currently training for a 5 kilometre race in September, being run by a group of girls to raise money for the Cystic Fibrosis Trust.

http://www.justgiving.com/cfangels2008

Now you may wonder how that is a 'similar note'- but again, i have simply made it look pretty- and purchased a rather gorgeous, floaty and very girly fairy dress! (Those who know my technological skills will be just as surprised as i am that i've managed to upload a picture!)

Said dress

My training plan, on the other hand, is a somewhat less pretty picture! How i am going to drag myself around a 5 km undulating course if i can't currently carry myself around the supermarket and back?

This blog is (fingers crossed) going to encourage my training plan, as i'll feel terribly guilty should i not follow it when other people are keeping an eye on me! Although, maybe i am talking to myself on this blog- which will make a nice change from me talking to myself out-loud where everyone else can hear me :- )