Bloggy woggy goodness

Again, I haven't blogged for a while. No good excuse, life just gets in the way.
Life is no less busy not than any other time, but i'm on enforced rest and being babysat. I am awaiting Christmas surgery, to protect my lungs from further acid damage, and perhaps give them the chance to rest and recouperate; but first, I need to be in a fit state for an anaesthetic, something I have been told I am not at the moment.
Lung function is currently floating at a record low, something which I didn't think I was due to hit for a few years. Generally I feel i'm pretty resilient and bounce back well, but i have undoubtedly been knocked for six this time, or perhaps for seven. This week has been sad all round, three friends/ acquaintances with CF have died, well before their time. CF 'friends' and the community we exist within is a strange one, despite having never met, and often never having had lengthy conversatioins, we seem to have this unspoken, unwritten bond. Such losses therefore are bound to hit each of us hard, and those of us who are struggling at the time particularly forcefully. It could so very easily have been one of us.
The CF community can also become quite insular at times like this, and i fear i fall foul of excluding my 'normal' friends, for fear of them not understanding, for fear of scaring them, for fear
That said, sometimes one ecounters a person who is enormously self-engrossed, vainglorious and egocentric. I am quite certain I have been guilty of this at times, and no doubt could do with a good shake now and then, but some people never fail to amaze, and disappoint me. Don't worry, I'm not forgetting I am generally surrounded by the best friends a girl could ask for, and count my blessings ever day.
Although merely recouperating from a chest infection, brought on by a cold, brought on by an attempt to behave normally at a friends wedding: I am on somewhat precarious ground. Walking is immensely hard work, the cold air steals my breath; the stairs are my nemesis, they leave me unsteady and wanting once I have reached the top, showering requires all of my days spoons (see previous post) and staying awake requires energy. This is not always the case, but it's rare now that I can take a day in my stride,The time has come for me to consider swallowing my pride and accepting help, and again, I use this blog to get there. This blog was begun in the hope I could share with my friends feelings and explanations I felt uncomfortable expressing or unsuitable interjecting in a more social situation. I ask you to take this in the same vein, and deal with it yourself, rather than making it a further challenge for me to face, another taboo for me to broach with you, I'm still me. There's nothing wrong with my brain, my intellect, my head.
I'm going to reach out to anything that might help with both hands, and continue to embrace life, living it to the full.

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.

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.