Saturday, December 29, 2007

So Christmas is over; I hope everyone had a fantastic one…mine certainly was. It’s funny, I was going to write about all the wonderful and amazing things I did this Christmas, but then I sat and reread last years blog and it’s pretty much identical! Except this time, I could actually participate rather than be a spectator. I was able to join in when I wanted, eat when I wanted, get up and sit down when I wanted, talk, sing carols, open presents…basically everything that had been so very hard and restricted last year was suddenly an open and easy option to me.

Its times like this – when I am repeating actions carried out with old lungs – that it brings home to me just what a struggle it really was. I remember Christmas dinner so vividly last year; within about 4 mouthfuls I was so tired and out of breath I lay down on the sofa again. Last year by the time I had had a shower and washed my hair, I was so exhausted I wanted to cry. Don’t get me wrong, I had an amazing Christmas last year, but it took a hell of a lot of effort. And this years was just so…easy. I can't describe how lucky I feel.

On Boxing Day, it was me who was insisting that we go on the traditional “we’ve eaten too much let’s try to feign some exercise to make ourselves feel better” walk. We strolled briskly down the road and I was grinning from ear to ear – a task that in childhood was resented as our parents made us go (it was warmer inside), which then as I grew older became almost impossible, which was now accessible to me once again.

I had a teary moment on Christmas morning when thinking of a family somewhere waking up for their first Christmas without a loved one, but hoped that they can take some small comfort knowing I am alive to see another Christmas thanks to their generosity of spirit. 31st December 2006 I sat with tears streaming down my cheeks as Big Ben struck midnight – tears of relief at still being alive, of fear of the unknown, of sadness of what might be ahead in 2007 should nothing change. I cannot even begin to fathom how I will feel this year…but I know I shall be out partying somewhere as no matter how huge it is emotionally it is cause for a huge celebration. This is a New Year I genuinely didn’t think I’d see.

And now here we are – a mere 6 days before my very first transplantaversary. I am very excited but already get quite emotional thinking about it. It was the beginning of one of the most difficult struggles in my life so far, but the start of a whole new chapter for me to embark on. Whilst a new door was opening for me, someone else’s was closing, and it does get to me more and more the nearer we get to the big day. Such a whirlpool of emotions. I have written on here more than once about how there is no “sad” or “happy” event – merely a mixture of everything in different quantities and my transplantaversary will be no different.

Friday, December 21, 2007

Oli is in the Mirror today!

Although you can read it here you'll need to buy a copy to see the man himself post transplant...

Go Oli! YAY!

Thursday, December 20, 2007

If I had this tree, I have a feeling I'd be minus a husband...


5 MORE BIG SLEEPS!

I'm like a child at Christmas I am. Oh no wait....

I still can't believe that this was me merely a year ago. My mummy did her annual Christmas shop with her mummy at the weekend and reminded me that it was somewhat interupted last year when she had to return home as I was finding breathing so difficult (even on maximum oxygen) that I needed her to come and be with me as it was pretty frightening. It's just so so weird to think that little did I know a matter of weeks later I'd be getting my new lungs.

I got a bit sad yesterday thinking about my donor family, who somewhere out there must be dreading this Christmas. I wish I could do something to help them. Thinking of everyone out there who has suffered a loss and might be finding the festive season particularly tough.

I really hope that rereading my blog gives those waiting for transplant, or indeed those suffering any difficult episodes in their lives some hope. Things can change beyond all recognition, you just don't know what's round the corner. The unpredictability of life is what makes it scary but also what creates hope. I think personally I'd prefer unpredictability if it means there's always a chance things could get better, rather than knowing what my lot is and having an unchangable path set.

Learn from yesterday, cherish today and hope for the future, I think that's a pretty good balance.

Wishing you all the most fantastic Christmas - may it be fun, festive, sparkly and filled with laughter and joy. Thank you all for your support, friendship, wishes and thoughts this year; I don't think you can ever realise how much a little message of support or comfort can reach out and touch someone at a time of need.

Bit of a deep pre-Christmas post there! I am off to continue wrapping presents and adorning things (predominantly myself) in glitter. YAY!

Tuesday, December 18, 2007

written yesterday but not posted as internet decided to pretend it was not there when it actually was.

I decided to go to Bristol for a two day visit; the town where I spent three of the happiest most fun-filled years whilst studying at university. I had a list of people to visit, the majority of which had not seen me (or had only briefly seen me) since my transplant. I was very blaze about it all - I think because it feels like a second home to me - and had absolutely no idea just what a hugely emotional trip it would be.

As I drove into the town centre, a big grin made its way across my face; I really do love Bristol, not only do I have a million very fond memories there but it’s a great town in its own right. I drove up to the flat where I lived for two years to be greeted by a manically waving and grinning ex-flatmate, who is still there as she’s a medic therefore will be studying for what seems to me to be the rest of her life. The flat hasn’t changed much, in fact to such an extent that there was still 2 old (empty) oxygen cylinders in the hallway and Claire’s eyes (the eyes we made and stuck on my oxygen machine) are still pinned on the notice board, which made me giggle.

Me and my girlies went out for lunch in one of the local caf├ęs which I never managed to get to as it has stairs in and I tended to go for ground floor close proximity places. Whilst we were munching our lunch and catching up, I suddenly realised; these girls have never known me as a "well" person. I mean by the time I moved to Bristol in 2002 my lung function percentage was already in the 40s and I was on 3 monthly IVs. It was quite a peculiar realisation as whilst they shared possibly the biggest part of my life with me so far, it was only a small segment time-wise, and so the “well” me is a new and novel thing, even more so than for people at home.

Walking along the roads past University buildings really bought back sharp memories of how I used to struggle; I'd arrive at the French department which was about 2 roads away from the flat breathless, sweating and exhausted, and would ensure I arrived about 20 minutes early so I could sit in the foyer and recover. It was all just normal life to me then however, and I didn't think twice about these allowances which had to be made for naughty lungs.

Of course it’s not just the people – I’d never been in Bristol as a well person either, although I never thought of myself as ill when I moved there to begin uni. I’d go to pubs and clubs with everyone else (mind you I still did that even once on oxygen) but I’d always be that little bit slower, be the one to get the taxi back, be the one to sleep all day the next day. Not that any of that mattered – as there were quite a few students who’d sleep all day completely independently of any health issues.

This morning I decided to wander down to the Drama department. As I wandered up the road, which sloped gently upwards towards the department, I was surprised to find tears pricking my eyes. I didn’t realise how emotional it would be. I didn’t walk up that road once in the final year; I was always either driven or pushed in my wheelchair. To walk towards the door just seemed so significant.

I figured everyone would have gone home as term ended last week so was delighted when I saw my favourite porter in the doorway, and even more thrilled to find quite a few members of the department still hovering around. The reaction from everyone I saw was the same; a polite “hello” with a look of “I’m sure I know you” followed by a very slow realisation sometimes prompted by me saying “I suspect I’ll seem more familiar to you if I sit down and stick some tubing on my face.” One tutor who only taught me in the third year commented “you look so different standing up!” but everyone was delighted and so lovely. They’d all followed my progress (always most bizarre when everyone already knows all the news you’ve come to tell them) and it was so lovely to catch up with them all. I had great trouble not bursting into tears on several occasions as I relayed events over the last 2 years; so much has happened since I was last in those four walls – which incidentally was when I was given day release for graduation whilst still having a chest drain in in the summer of 2005.

After tea, chats and a great catch-up, I headed towards the BRI to see the team that cared for me whilst I was studying. The look on their faces was fantastic as I walked in, and we hugged laughed and chatted whilst I threw many a wedding photo at them, until it was time for me to go. I am hoping to go back to the Brompton too at the beginning of next year as teams who care for you when you’re so sick don’t really get to see the positive results as your transplant hospital takes over your care. They worked tirelessly to get me that far and preserve my health until a transplant materialised and it’s very important not to forget that.

I drove home this evening tired, a little emotionally drained, but very very happy. Bristol is much the same as it ever was, but my life has changed beyond recognition and that made this visit a very strange but beautiful one.

Thursday, December 13, 2007


We’re baaaack! We had an amazing time, Budapest is breathtakingly beautiful. For those who are as daft as me (probably not many of you, here’s some information about where we went.

I’m a bit of a nervous flyer – I wasn’t always so but when I was about 17 I developed some large cysts in my lungs and there was a danger of them popping (which many years later they did. Repeatedly). I was told at this point going up in an aeroplane may in fact make them pop and cause my lung to collapse, but that hopefully they were stable, and the only way to tell for sure was to fly. So that first flight (as I’d be damned if I was going to not go on holiday ever again due to something that may or may not happen) was a pretty scary one, and I think dented my confidence.

However the flight to Budapest was fine. I have to remember I have healthy lungs now that can cope with high altitude and cabin pressures, and after about the first 20 minutes I stopped saying “are we nearly there yet” with my eyes squeezed shut and began to relax. I even managed to doze, woohoo!

We arrived late afternoon so ditched our bags at the hotel and went straight into the centre. It was nightfall by now, and all the streets were decked in Christmas lights as we walked towards the square where the famous Christmas markets would be. We stopped at the first stall to grab a glass of mulled wine and wandered through the little Christmassy kingdom full of jostling crowds. The stalls were beautiful and so brightly coloured; candles of all different shapes sizes and colours piled high, hand made Christmas decorations of dried fruits and nut shells, painted, glittered and sparkling, scarves of every colour and pattern imaginable, large wooden huts with the most delicious smells coming from them as steaming bowls of soup were served to hungry shoppers.

Made a tad hungry by all the scents of food, we sought out a restaurant and found ourselves climbing down a winding staircase into a dark high-arched tunnel filled with candles to get to a restaurant in an old converted wine cellar. Hungarian food is very good – there’s loads of choice, a key speciality being of course the famous goulash which we had more than once. I may or may not have eaten far too much during our few days there.

We also ensured that we visited the Spas that Budapest is so famous for. The first one was my favourite as they had outdoor baths there, so you’d sit in steaming hot water with the icy wind whistling over your head. It was so surreal and rather magical, especially as dusk fell.

We saw all the main sights, sampled as much food and drink as we could (I even tried the local pear brandy which was pretty good, says she who knows absolutely nothing about what brandy should or should not taste like). I may have bought a few clothes too. Oops.

Whilst there I thought quite a bit about this time last year. A and I always try and get away for a few days around Christmas and over the years our destinations have got increasingly closer to home. In 2006 thanks to the Chloe Janet Ball trust I took A to a luxury hotel in London. It was such a different experience, we were overjoyed that I was merely well enough to “be” in the hotel, and spent pretty much all the time in the room, with me sleeping intermittently, trying constantly to catch my breath with my oxygen machine as high as it would go. It’s fantastic that we appreciated and enjoyed that small but significant break so much, and I think experiencing that end of things made this honeymoon even more special.

I realise I am now beginning to waffle therefore shall close with a few more pics. Enjoy!
Christmas Market

The tunnel to the restaurant.

It's a Hungarian Tram behind me. I got a bit excited.

Thursday, December 06, 2007


Harefield today – my first clinic appointment in 3 months! The weather was pretty atrocious this morning meaning the roads were just as bad, and I drove past two pretty horrible accidents (I am not very grown up and it makes me very sad when I drive past these things). Got there late (doh) so straight in for bloods. Clearly I hadn’t drunk enough this morning as even after 3 attempts by one of my fave phlebotomists who usually has no problems with me, I was pretty damn stingey.

I knew I had a busy day ahead as I had several things on my agenda; Christmas cards to deliver to each ward, a huge tin of biscuits to wave at any passing staff, and of course wedding photos to show off left right and centre! Oli and another person I know are inpatients so I wandered off to wave to them as well. Oli is looking fantastic (although if he’s anything like me he will want to pelt people with anything in reach who keep saying that to him) and it was so lovely to see all the staff again on various wards. There was much cooing and admiring of photos and chatting excitedly about the honeymoon which is on Saturday!

I may not have blogged about this…we weren’t going to go on honeymoon as A had used up all his leave from work (and more). Well I guess technically I’d used it all up for him, but either way it wasn’t looking likely until his lovely company decided their present to us both would be to send us to Budapest for 4 days to experience the gorgeous city and famous markets, hopefully including some lovely Christmas ones. I am really rather over excited about it all. How sweet are some people in this world…

Anyway back to today; X-ray was fine, lung func up quite significantly which they were all delighted by as I am nearly 1 year post and it’s still moving upwards, yay! The only thing that was a tad amiss is my creatine levels seem to be playing around a little bit. I really know very little about kidney stuff (in fact what I do know you could probably write on a postage stamp) but I do know that we don’t want jumpy creatine levels as it is some sort of indicator of kidney function. Or something. Anyway it’s the first dodgy result like that I’ve had since discharge so it will be followed up once we get back from honeymoon. I’d rather appreciate it if my kidneys fell into line and didn’t get too over excited like that again resulting in much more normal blood test results.

All in all a good day. And am clear to fly off on Saturday – eep! (never been the keenest of flyers). Will be back and posting with pics some time next week.

Monday, December 03, 2007

Oli is doing better, fingers crossed for onwards and upwards from now on.

Also excitingly (well for me) I have been married one month today, and couldn’t be happier. Yay!

On Saturday night we went to a friend's transplantaversary celebrations (his brother gave him a kidney a year ago). It was a great evening, but strange for me for two reasons. Firstly, it was my first real time meeting new people, or at least people who don't know me in the transplant context or don't know any of my background, since I had my op. Before my transplant I was a) fairly easily identifiable due to all the tubing and b) it was clear there was something wrong health-wise. Now, I was meeting and shaking hands with various people, and the inevitable “so how do you know X” comes up.

I decided not to opt for the “I’m the one with the new lungs” and went with “through charity work” instead. I have never had a problem being open about my health and history, even before it became so evident, but it just felt so strange to be able to become an anonymous figure again, someone where no details are revealed unless I make them so. The last real time I was able to do this was probably the start of University – when you have that huge dilemma of how much to tell people, as these are the people you will be living with for the next year or so, but at the same time you want them to get to know you on your own merits, and not with the premise that you have a chronic illness. I don’t think I will ever shy away from talking about my transplant – I’m too into raising awareness and also too much of a drama queen and quite enjoy trying to watch people digest the fact that I am on my second pair of lungs – but it was a novelty to just be a blank canvass and be able to divulge whatever information I chose.

The festivities also reminded me that my transplantaversary is coming up very soon. All I know so far is that I want to do two things. I want to go somewhere quiet to reflect and have a little cry for the family that is marking a very different anniversary, and I want to get together all the people I love to celebrate and say thank you. I have written before many a time about how things in life cannot be divided into happy and sad occasions, and this day will be no different. On the whole it marks the beginning of my new life, a chapter which is an incredible gift and the opening of so many doors which would never have been, but it also marks the start of some of the hardest two months of my life, of a great loss for someone somewhere, and of a hell of a time for my family as they watched me battle complication after complication.

I can’t really predict how I will feel till the day. All in all it will be hugely positive, I’ve made it a whole year post transplant, and bring on hopefully many more. But I won’t be forgetting why I am able to be here and celebrate this special day, and will find a way to mark it. Somehow.