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.