Long overdue update

As i was 'prettifying' this blog, i thought i ought to update some content also, it is long overdue.

This blog was initially a vehicle to communicate with friends about my health issues, whilst removing some of the awkwardness and energy sapping rambling explanations. I found it nurtured a degree of silent understanding and unquestioning acceptance, that i hadn't experienced before. I know people read it, and never said another word. Since I was told (on Christmas Eve!) that i didn't need to be listed for transplant yet I have been riding a rollercoaster of emotions. I found myself despairing at being told I wasn't going to be listed, in contrast to my family's happy delirium. This may, to many, appear ungrateful, confused and an altogether odd response. In my defence, I have been assured I am not the only one to have reacted like this.

I felt that being told i was 'too well' to be listed was cruel, and left me hanging. Holding onto the thought of transplant assessment, and the process and support network which surrounds it, had been what i had been holding onto for some time. The process of being referred for the transplant assessment took almost a year from when it was first mentioned, and as time went on it became more and more consuming.
Having this outcome sprung upon me, after such a build up felt like having my hand-rail removed whilst i'm still unsteady.
I feel this has been something of a guilty secret since i received the outcome, as those friends who are involved in the transplant world and are desperately, torturously waiting for their call will feel they would do anything to be in my position and be 'too well'; and outsiders from this strange and surreal world appear to see it as an 'all clear', rather than a delaying of the almost inevitable.

To be continued...

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.