Live Life Then Give Life.

Registered Charity number 1123333.

What can I say but...

YAY!

My birthday was excellent and I was totally and utterly spoilt as usual. A and my mother decided that this year I should blow out all 24 candles in one go, which I duly did and was rather chuffed with myself.

Since my last post I have been to two exotic locations; France and Sheffield (one arguably more exotic than the other)

Sheffield was for work and involved me travelling up there on my own and staying in a hotel on my own. Now for a 24 year old (woohoo!) that's not really a big ask, but I still find these moments of assumed independence oddly unnerving. There’s absolutely no reason why I wouldn’t be fine doing this, but I suppose when you’ve been so heavily reliant on others and so used to people being with you for everything, “firsts” are always a tad unsettling.

As it turns out, I loved it. It was great to be in the hotel by myself, and a fantastic confidence booster when you face something you’re unsure you can do (had fantastic visions of me ending up in Aberdeen or somewhere).

Whilst in Sheffield I had the privilege of meeting Nattie’s mum. Having been “working” with rather poorly people for a while now, it takes quite a bit to shake me the way Nattie’s story has. She is close friends with Rachel, another completely awe-inspiring young lady. These two are not even 21 and have faced more than most of us will face in a lifetime already and are still smiling. Please pay their page a visit; every time I do it inspires me.

Then to France over Easter; 3 days of eating, drinking, taking in the sights, eating a bit more…a fantastic break. Back to work today (which I am still loving) and so life continues to move at a rapid but exciting pace. Oh and last of all watch this space for some exciting Live Life Then Give Life news coming soon…

I was discharged from Harefield exactly one year ago yesterday.

I still cannot quite believe how far I've come. I remember so vividly feeling nervous, shaking like a leaf (the medication doses combined with my muscle wastage caused this) my speech was slow and hesitant (something which I think anyone who has spoken to me recently would agree is no longer a problem) and I was scared; scared of what lay ahead, of the unknown. It was an exciting but terrifying moment, leaving those winding safe grey and blue corridors, leaving a room which consisted of a bed, a chair and a timetable of daily monotony.

I knew what was coming each day and when and why, but more importantly I didn’t really have to know, as there was always someone there of the medical profession to double check everything anyway. Becoming institutionalised is, in my opinion, a well-established phenomenon. Desire for your freedom begins to give way to fear of it, and dislike of your restrictions is disolved by comfortable routine.

I needn’t have feared; life at home was more wonderful than I could have imagined, and what the psychologist had said was true; you don’t need to worry that you have lost your “place”, your role as the sick one, as your new role will quickly flourish and grow and feel normal faster than you think.

Life since 16th March 2007 has moved at such speed that I feel like I’ve been flying. I have packed as much as I possibly can in every single day, firstly as I just want to grasp each and every opportunity with both hands but also I think to some extent because I still find it hard to let go of that slight underlying fear that this magic carpet might be whisked away…I don’t want to waste it whilst it’s here.

This has been a monumental year, and I’ve done a million and one things I never dreamed I ever would or could. To round off a year out of hospital in style, it is my birthday tomorrow. Amusingly a year ago having been firmly instructed “have a nice quiet weekend, not too many people, not too much going on” my mother threw a party for 100 people in a slight (and possibly inherited) fit of over excitement.

This year will be much more serene (am a working grownupperson) but equally as special. I say it all the time and I imagine it’s becoming so very boring to read but there are no other words; I am such a lucky lucky girl.

I get everywhere I do....!

Glad to see Alice is doing so well, pop along to her blog and say hi if you can as she only recently got her new lungs.

Today was a little strange.

I woke up at 2.30 am with a splitting headache and didn't really get back to sleep after that. Then got up and staggered around getting ready to go to hospital, not quite considering it might not be such a good idea to jump in the car feeling so rough. After an hour sitting in traffic I pulled over and was, erm, a tad sick.

Having clearly lost my sanity along with my breakfast I continued driving (not advised) and managed to get to harefield in one piece. My lovely friend who had the joyous pleasure of living with me for 3 years at uni met me there and looked after me whilst I dozed on a bed in a sideroom. Goodness knows what was going on with my body this morning but it wasn't pleasant.

The good news however is that my lung function is way up! And after my blood results and Xray all came back clear I was allowed to go home, as my consultant wisely pointed out just because you are post transplant doesn't make you immune to picking up the odd nasty which everyone else is just as susceptible to as you.

So to summarise: everything is fine. Taking it easy tonight. Lung function is fab. so hurrah for that!

Harefield update as promised:

I am a tad put out. I always had this complex before my transplant that I shouldn't start thinking I was onto a winning streak as inevitably my body would step in and throw a spanner in the works (interesting mix of images there).

A year of playing it safe and my lung function has been impeccably behaved. Then I start my first ever full time job….and my lung function dips for the first ever time post transplant.

Now I know it’s not the job. How do I know? I just do. I am suspecting it has rather more to do with a certain head cold which had me snuffling all last week. But seeing as my immunosuppressant levels have also dipped a bit, I have had a change of medication doses which means….I have to go back up there on Monday morning.

If there is no improvement, then the dreaded “R” word is immediately investigated and I will need a bronchoscopy. I was less than amused when heading back out into the hospital grounds and may or may not have been sporting the face of a five year old whose ice-cream has fallen out of its cone and onto the floor.

As has happened to me before when I’ve been feeling sorry for myself, perspective introduced itself with a gentle nudge, this time by the way of a gentleman who hesitantly asked if my name was Emily. When I replied in the affirmative, he grasped my hand and informed me he was John’s father.

I had the privilege of meeting John when I was in for my last bronchoscopy. Really lovely guy, warm smile, friendly and emailed me at a later date to say thanks for popping my head round the door and we emailed back and forth a bit.

His father was gentle, dignified and kind, and informed me that I make more of a difference than I’ll ever know. How someone can have the inclination to tell someone something so warm like that at such a time is beyond me. I hope if John’s father reads this he will know what a lot that meant to me, and how I was merely humbled by his kind words.

So all of the above considered, I am absolutely fine. I need another little check up next week, but am working away merrily all this week and still loving it. If an additional appointment and some further tests is all that’s required at present I’m in a rather peachy position and intent to remember that this week.