Tuesday, September 18, 2007

The big day itself!

Hydro active 2007.

I woke up bright and early raring to go. Long-suffering A was forced out of bed on his only day off to make me beans on toast (figured I probably needed something a bit more substantial than a cereal bar) and I in the meantime spent an inordinately long time donning my pinkandsparkly fairy costume.

I drove my grandma, (who in a fit of madness had signed up to walk it too) and grandpa up to Hyde Park, and complete with rather large and glaringly pink banner, we walked up the road towards the main gate. As we reached the meeting point, I could already see clusters of pink winged people and other bright yellow ladies (CF Trust T-shirts) I got a round of applause as I arrived and whooped appropriately in return.

After some meet and greeting plus plenty of posing for photos I hollered at the Angels to head towards the starting line as it was by this time 5 minutes to 11. We trouped across the field, me leading the way (ON FOOT still can’t believe it) and squeezed onto the track to join the other 20 000 odd ladies who were eagerly raring to go. Events like this are just such amazing examples of human spirit. People walking for loved ones, for those they have lost, for those that have overcome adversity…I just love the atmosphere.

We were whooping with glee as we set off, helped somewhat by the rather nice group of armysoldiermen who were waving at us from a balcony. I quickly lost interest in carrying the huge banner I had made and my ever faithful Angels took it in turn to carry it (mum swooping in if ever a camera came into view).

Hydro active 2007.

It was gloriously sunny with a strong breeze; fantastic for keeping cool, not so fun for those carrying the banner and trying not to take off. First k was fine, and the second, then pain round my ankles began to kick in. I could feel the fluid swishing around (mm) and my ankles tightening as they inflated even more. I was determined to keep up a good pace as after all this is supposed to be a challenge; so many wonderful people had sponsored us I felt I really had to keep going briskly to make it worth their while.

As we approached 4k my legs ankles and feet were really beginning to hurt. To keep myself going I just remembered how last year it had been my entire chest and my lungs aching and burning, and how incredibly lucky was I just to have dodgey fatfeet this year instead of tiny fading breathers. Seeing I was struggling a bit Lucy gave my hand a good squeeze; nothing said but enough done, I knew I would get to the finish.

In the final k we approached a slight incline, various angels getting behind me to give me a bit of a helping hand! Then suddenly I could see the leafy shaded corner and had a flashback to seeing my two grinning physios waving me over to get me out of the chair exactly a year ago.

We turned that final corner and were hit by a wall of cheers; people lining the edges of the course shouting and encouraging everyone on for those final 500 metres. We moved ever closer to the finish and I couldn’t suppress the joy that was bubbling up inside me. With a rather loud whoop I broke into a run hearing “oh god she’s running!” from various shocked Angels and sprinted (well stumbled) towards the finish line.

The feeling of joy was just indescribable; what a rush, what a buzz, I just felt so alive!! People were throwing their arms around me, hugging me, squeezing my shoulders, everyone just so thrilled to be part of an event which was a million miles away from last year.

It wasn’t until we moved towards where the medals were being handed out that the tears came. Never in a million years could I have dreamt how this summer would be. Every day is so amazing, days like this even more so. I love my life so much, am so incredibly lucky, and to be able to share so much joy and celebration with so many people was just fantastic.

My ankles are still a little swollen but I feel absolutely fine. I am still grinning from ear to ear about it all, a huge well done and thank you to all my angels and lets hope the money we have raised for the CF Trust will go to find a cure and prevent children born today going through what I have been through.


Some more piccies of the day:

I may have spotted the camera.

Thank you Angels xx

Friday, September 14, 2007

48 hours and counting!

oops I have let this blog slip a bit haven't I....

But fear not, I am well and truly ready! Last weekend I walked the Harefield Fun Run and so am a bit more confident now that I can do this. All that really remains to be done is to try on outfit, make large banner...fun things like that.

I am a little worried today as my feet swelled up yesterday and haven't really gone down. I am going to ring Harefield later but I am just really hoping it doesn't affect Sunday. It can't really surely; I mean if I went there with a collapsed lung last year, some puffy feet surely can't really stop me!

Thursday, August 23, 2007

Tortoise and the Hare

FVC: 2.84 FEV1: 2.32

Treadmill: Half an hour!!! Av 4.7km/h
Cross trainer: 2 mins (what can I say I was knackered)
Weights: only arms completed.

I decided to try and attack this from a different angle this time. No matter how hard I try, when I am pounding away on the treadmill at 5km/h I can't seem to push myself over 20 minutes without risk of flying backwards off the treadmill cartoon-style. So I figured as distance is the important thing here (not speed) I would slow down as my legs began to seize up, but still keep going. And it WORKED! Added another 10 minutes onto my time, and felt ok afterwards! So if I can just creep up 5 minutes at a time over the next month, I think it'll be feasable that I can complete the whole thing. WOOHOO. Obviously not quite as fast as I would have hoped (was hoping to do it in an hour, hence the whole training at 5km/h malarky) but hey as others have pointed out, if I finish the whole thing at all it will be fantastic. So that's all I'm going to aim for.

This post is entitled Tortoise and the Hare for that reason. "Slow and steady wins the race" and all that. Actually this is a very important motto for me, as someone told it to my mum early on in my transplant when I was struggling to move forward at all, and it kept her going, then when I was conscious enough to understand things, kept me going too. Hopefully on the day it will prove correct again.

I got my running, no wait, walking number through in the post yesterday so now it is very very real! I am still trying to decide what to have on my banner. Oh did I not mention that? Clearly this isn't going to be hard enough so I will be attempting to carry a banner explaining my scenario all the way round the course. Have already got in mind people who I will pass it over to when my arms are killing me...

Friday, August 17, 2007

A brand new experience!

FVC: 2.67 FEV1: 2.16

Treadmill: 20 mins av 5.2 km/h
Bike: 5 mins
All weights completed

This morning was really good. My mum and sisters picked me up bright and early as they were heading to aqua aerobics. I saw some of the class, it looks like fun, but I'm just not confident enough yet to go at someone elses pace; what if I need to stop then look like a fruitcake on my own? Anyway, whilst they splashed around "gracefully" I took myself off to the gym and did a really good workout. And even more excitingly I JOGGED for the first time!!!!!!! OK it was only for 60 seconds at a time before my legs felt like rubber, and I had to grip the handlebars as I felt so unsteady, but still YAY. Kept above 5km for the entire thing (except for 2 mins cool down) and felt extremely....well worked out afterwards.

With that and the bike combined I did just over 3k. I am a bit worried still though, less than a month to go and really I would have liked to be doing 4k in one go by now....I think September may be more of a struggle than I anticipated but am still determined to do it.

Monday, August 06, 2007

Good old treadmill.

FEV1: 2.30 FVC 2.77

Treadmill: 18 mins av 5.2km/h
Cross trainer: 4 mins
All weights completed
Sit-ups completed.

I went with Abby to the gym today. It's so much easier to motivate yourself when you have someone to go with. I headed straight for the treadmill, my faithful favourite whilst Abby went for the rowing machine which looks far too complex and scary for my liking. I maintained 5km/h for nearly all of it, but slowed down for 2 mins and sped up to a jog (first ever time!!!) for 2 mins. Jogging was very hard work, it must be different muscles that you use than for walking as my legs felt like jelly after seconds. Still it was a good morning and I feel invigorated for it. Just hope I can get my distance up before September...!

Tuesday, July 24, 2007

Why you should sponsor 2...


When asked to write about my very special angel Mary, I thought 'of course', 'easy', 'why not?'.Now, here I am sitting down to write words I imagined would flow and I fear it might be impossible.

How do you possibly pay homage to one of the best people you have ever met? How do you pay tribute to a friendship, which spun the best part of 20 years??? Where do you find the perfect words only suitable for the perfect girl? How do you convey a lifetime of memories and a forever of gratitudes? I don't know!!!! I'm lost for words. (and I wish Mary hadn't distracted me so much in English class!)

I will however, do my best, and I'll start by telling you about her.

She came into my life early on, I think maybe in the swimming pool. And that was the start of it. The beginning of a beautiful, honest friendship, that I feel honoured and proud to have been half of.

Mary was the epitome of beauty, joy and radiance. She lived a life rich in everything and touched every heart that came her way. You could not but love this energising creature with a smile and a laugh that were utterly infectious. She never complained and took her illness in her stride. Always brave. Patient always. She was never 'sick', she just had CF. It was never an issue, never a problem, just a way of life.

She had hopes, dreams and aspirations just like every other girl. She had more courage and bravery then all the soldiers, in all the armies, in all the world. In lifes battles, nothing got in her way. She was so determined always. She was going to overcome her condition and never wanted any special treatment or recognition for her heroic ways.

Mary packed so much into her life, and she gave so much joy to mine. She liked holidays, spa trips, shopping, loved to gossip with the girls. Loved shoes, loved handbags, loved make up, loved fashion. She loved life. And most of all, she loved Alan.

As we grew up and got older and I started to read up and understand CF. I think I used to worry more about the future then Mary ever did. She had a wonderful attitude and would always say to me, 'what will be will be Clo'.

I knew God had great plans for her, I said this to her once and she said 'Oh, I'll make my mark yet!' Not only Mary, have you made your mark on the world pet, you're forever imprinted on so many hearts, in so many ways.

In 2005, Mary fronted the Irish Organ Donor Awareness Campaign,'My Life, Your Choice'. Although in desperate need of double lungs, Mary did his for transplant patients nationwide, not for herself. She simply wanted to raise awareness as the number of donors was depleting. On so many times she said, 'if one person gets a call after this, it will all have been worth my while'

This was Mary down to a T, always thinking of others, everything you would ever look for in a friend she had, Loyalty, Honesty, Beauty, Inspiration, Joy, Passion and support amongst so much more. She had a wonderful way of making everything ok, she often had an uplifting verse or poem or a cheeky grin or a simple 'cop on' or 'pull yourself together' that you couldn't help but pay head to. And God could she make you laugh, often til your sides hurt. (or until I thought she'd choke from the cough)

Mary was the type of person who when I was about to finish the book, PS I LOVE YOU, sent me a flower that day because she knew by time I got to the last page I'd be a blubbering mess. The card simply says 'because I know you'll be sad xxxx'. It was always four kisses. I'd give her three back. For that and for so much more, Mary, Thank you. She's the kind of person who had a card waiting to welcome me home after my travels. The sort of friend who organised my surprise 21st party.

We had plans to go to far away places and do so many things. Recent conversations often began with 'after your transplant', we'll do this and we'll do that, let's go here and let's go there. Of course we had unrealistic dreams too, but that's what dreams are for.

One of our plans from years ago was to drive across Europe in a camper van. This always makes me smile. And never fails to make people who know us laugh; everyone knows we wouldn't have space in a camper van for our shoes, handbags and cosmetics! Never mind actually journey somewhere in one! We may have set out on the trip but I have no doubts it wouldn't have been long before we phoned home for money to check into some posh hotel with a spa! And the laugh we would have had!

We planned our weddings, our dresses, bridesmaids, flowers, the works. The idea of Mary never been in any of that never ever came into play, not for a second. I was sure she'd get transplanted and live lifes dream. Her own positivity brushed off on all of us.

CF never held Mary back, if anything it gave her more of a push to do everything possible for her to do. She had such an amazing Aura and such a good outlook on life. All of Mary's CF friends whom I have befriended seem to all share this trait, I used to joke with Mary tat it must be built into the gene! I admire all PWCF and I know Mary did too. She found much comfort and solace, often inspiration in her CF friends.

To loose a friend to CF seems very wrong, I wonder why there is no cure, wish I was a scientist so I could invent one. Wonder why she couldn't have had one of my lungs (if we were compatible), I often used to ask her wouldn't one of my lungs be better then two of hers! She'd just laugh. I'd have given her both in a flash. I hope she knows I was serious.

To loose a friend so young is obviously something you never imagine. It's unfair, unjust, heartbreaking and wrong. To loose Mary is like having the life sucked out of life, its wrong beyond belief; it's something I can't describe. Something I know has not yet hit me. It's a huge void, a massive emptiness. It's lonely.

Under all the negatives, I feel honoured to have had a living angel in my life. I feel comfort in the fact she is now finally breathing easy and resting which she so deserves.

I feel thanks. Thank you Mary. For the good times. For your smile. For your flowers.

Thanks for your stories, for your gossip. Thanks for teaching me what life is about and that it's a gift. Thank you for your courage and bravery. Thank you for all the times you made me smile and the times you made me laugh so much we cried.

Thanks for the memories. Thank you from the bottom of my heart for being you. Sleep tight and breathe easy. Mind me from up there and give Daddy a kiss. I love you to the moon, beyond and back. We'll all be along in a while.

Keep me a seat.


This piece was written by Mary's best friend. Please, help us see off CF. www.justgiving.com/emilysangels2007.

Back on task

FEV1: 2.16 FVC 2.65
Treadmill: 16mins at 5km/h
Treadmill on high gradient (hill training) 5mins.
Cross Trainer: 5 mins
Weights completed
Sit-ups done.

After naughty NAUGHTY slacking I have been back at the gym, hurrah! I went with my mother (it's always better with two) and decided to try and go up a gear despite the small pause in training. Having completely lost my jogging bottoms I had to put on what I may or may not normally use as PJ bottoms (they look like jogging bottoms, honest) resulting in gales of laughter from my mother.

I upped my speed and also increased the gradient a bit, and managed surprisingly ok. 5km/h is what I wanted to get to speed wise, and now to work on the length of time I can maintain it really.

Tiredness has come back into play. I am thinking it's probably because I am doing too much, but I am struggling to slow down. This week will be quieter though (that's what I said last week) and I will try and rest up a bit more.

Although I haven't been at the gym recently, I did do a huge walk round london the other day which we calculated to over 3km, and am still continuing to use the stairs all the time etc to try and maintain a basic level of training. Still moving forwards, but 5k seems like an awfully long way away, I really hope I can do this....

Saturday, June 23, 2007

Learning to space it out.

Current FVC: 2.45 FEV1: 2.02

ooh I have been terribly naughty and not keeping this blog updated nicely!

OK so Tuesday:

Treadmill: 20mins at 4.3km/h
Cross Trainer: 5mins
1/2 Weights completed (I was tired).

Annoyed that I didn't do more at the gym, on Wednesday I did a 20 minute walk into town. This was clearly pushing it a bit however as I struggled to get back to the car, and once I got home fell straight asleep for 4 hours. I may space out my exercise a bit more than that in the future...

Tuesday, June 05, 2007

Pink in a world of black and white.

FVC: 2.45 FEV1 1.97

Treadmill: 16 mins
Bike: 4.30 mins
Crosstrainer: 5 mins
All weights completed
Sit ups completed

Another round at the gym; I am getting slightly more confident every time. Even though I still blatently don't fit in (everyone else seems to be in white Tshirts with black bottoms, I am in a pink stripey vest top and pink jogging bottoms) I am getting to know the little customs - wiping down the equipment after use, working out which attachment goes on the weights, being able to work my own padlock first time, that sort of thing.

I was overjoyed at my progress on the Crosstrainer, which I found incredibly hard last time, until I looked at the screen and realised I hadn't upped the level at all therefore was actually working less hard than last time. Never mind. On the whole, pleased with my progress, and definitely enjoying it still!

Monday, June 04, 2007

How lovely bobbing along...

FVC: 2.27 FEV1: 1.94

Went swimming yesterday, we took Abby as part of her birthday present. My transplant has clearly made me wussier when it comes to water as yet again I spent a rather long time edging myself into the pool. We did several lengths, then I raced my mother (and won. again. Ha) and then she decided it would be a bright idea to try running through the water as this would be harder work therefore better fitness training. The result was neither pretty nor highly successful. It probably made for amusing viewing though. A few more lengths later, and I decided to call it a day. Definitely more swimming done than last time, big yay for that!

Wednesday, May 30, 2007


FVC: This stands for Forced Vital Capacity. It measures the amount of air you can blow out in total from your lungs. Today (30.5.07) mine stood at 2.23 which is approximately 60% of predicted for my height and age I reckon.
FEV1: This stands for Forced Expiratory Volume, the one representing one second. It measures how much of your FVC you blow out in the first second, therefore indicating how strong/elastic your lungs are. Mine is currently about 1.81 which again is about 60%. The FEV1 is always lower than the FVC.
Sats: This is shorthand for oxygen saturations. The average healthy persons sats will hover between 98-100% although anything above 95% is fairly normal. Below 95% indicates problems. If sats drop below 90% it is customary for oxygen to be used. Sats should not be dropping below 85% if possible.
WBC: This stands for white blood cells. This count is measured on routine blood tests to keep an eye on potential infection. Normal WBC count is anything below 10.
CRP: This stands for C-reactive protein. CRPs are another blood test result, these are inflammatory markers, again raised levels are a sign of infection. Normal is below 5. Mine may or may not have climaxed at 500 before. (oops).
BP: Blood pressure.

sponge legs

FVC: 2.23 FEV1 1.81

Treadmill: 18 mins
Bike: 4 mins
Cross Trainer: 3 mins
All weights completed.

Ohmygoodness I am so not naturally sporty! Neither is my brain it seems, as I jumped expectantly into the car, sped off to the gym...and realised I had not brought my gym bag with me. I had however remembered to bring my handbag which was of no use whatsoever and would get in the way prompting me to hide it in the car. I rang my mother to tell her and she errupted into gales of laughter. Supportive.

It is fantastic because I am now no longer out of puff merely from glancing at the equipment, but my legs are like pieces of sponge. The treadmill is definitely my favourite but something tells me I shouldn't just stick to that as I wont develop other muscles (no one professional is telling me that, that is my guess). The bike just kills my legs after about 2 minutes, but at least I managed a minute longer this time than last week. And did a great deal longer on the treadmill so yay!

Lung func staying ok, Harefield tomorrow so we shall see what they have to say about this persistant wheezing which keeps cropping up...oh and I am going to do a glossary post (idea nicked from Oli's blog) to explain these funny numbers I relay in various blogs and posts!

Tuesday, May 29, 2007

Training of sorts.

Current Lung Function: FVC 2.37 FEV1 2.09

Saturday counts as a training day to me as I went to Thorpe Park. For those who have been (or been to any Theme park) the place is huge, and since I stopped using the wheelchair completely about a month ago now, I decided to try the whole thing on foot. We arived around 9am and were padding round all day till 5! I also suspect the amount of screaming I did on certain rides was good for strengthening the lungs.

It was hard work, and I had to sit down for breaks at quite a few intervals, but generally I felt really good afterwards (after a long sleep that is). Unfortunately neither Sarah or myself brought the pedometer so I don't know exactly how far I walked. Am guessing it was quite good training though! 2nd gym induction tomorrow, we shall see how it goes...

Thursday, May 24, 2007

Angels take flight!

Now I have posted my long and official type blog I can start waffling for real, woohoo!

Today I joined my local gym! This really was the most bizarre experience, I feel totally out of place amongst the lycra-clad lean bodies pounding along on the treadmill, but wore my nice pink jogging bottoms and a vaguely sporty looking vest top, and grasping my gym bag (purchased by my mother) tried to saunter nonchalantly in as if it were totally normal and acceptable for me to be there.

The man who did my induction was lovely. I may have scared him somewhat when actually confessing that my "small op" was a double lung transplant. I did however reassure him that I was safe to start gentle gym exercise and that I would double check again with my team and get a confirming letter. I have been walking half hour walks for a while now so I want to do a bit more, and I would like to work on my muscle strength which is quite frankly currently that of the pilsbury dough boy.

I was introduced to many daunting and formidable looking machines and attempted them one by one. I struggled greatly on the first two (bike and cross trainer) which was quite dispiriting, however once I got onto the treadmill I found a comfortable stride and was able to maintain it for 5 minutes (woo!) Bearing in mind in February I could not lift my own head, let alone walk, I feel this wasn't too bad a start.

I also learned what all the weight machines (which looked to me like complicated methods of torture) do and how to work them (I shall be asking for assistance next time I encounter them I'm sure.) After an hour wandering round and trying everything out, I left feeling slighty more confident and pretty determined to get stuck into this. Today revealed I have an AWFUL lot of work to do, I struggled with 3 minutes on the bike, but that is what challenges are for, so I should stop worrying about it and get going! Next session is wednesday, also with a trainer's guidance. Pink trainers check, sporty type water bottle check, bring it on....

Why you should sponsor...

Welcome to the Hydro Active 2007! Before I start blogging I am going to attempt to explain things to new(er) readers. Even though I suspect the majority of you know lots about me (in fact possibly more than I do in some cases) I am going to start from scratch…

So first of all, why the CF Trust?

Cystic Fibrosis is the UK’s most common, genetically inherited, life threatening disease. It affects around 7500 people in the UK. CF causes an overly thick and sticky mucus to be produced, which interferes with the digestive system and damages the lungs. Predominantly due to the latter affect, the average life expectancy 31 years old.

There’s the sciencey bit, now what about how it affects me. I was diagnosed with CF at birth. I had what I would consider a very normal childhood; I had the strict daily regime of inhalers, antibiotics, enzymes, vitamins, steroids, nebulisers and physiotherapy but as it was all I had ever known I never really thought much of it.

As I grew older, inevitably Cystic Fibrosis began to affect me more and more. Admissions to hospital for intravenous antibiotics increased to combat the ever more present chest infections, but socially I continued to thrive in my own over excited melodramatic way.

The teenage years approached. I wore lots of black, (I did honestly), fought with my parents, did everything a normal teenager is supposed to, but in the background there was always the underlying and continuous readmissions to hospital, which to me merely meant a readjustment of my social schedule, for example to invite all my friends up on the train to come and get a takeaway and squash into my hospital room to watch a film. As I got to know the nurses better, we got into little routines. Monday night became takeaway night, the dinner man got to know my favourite dishes and the number of salt and pepper sachets I would take off by heart, and hospital didn’t seem alien or scary, just a parallel segment of my life I would occasionally slip into, feeling slightly lost whenever I would have to return to the real world and discover everyone else had moved on 3 weeks without me.

A levels flew by, and University loomed. By sheer fluke (and extremely good luck) I selected Bristol, which had the best CF centre imaginable. I was cared for magnificently and the team worked overtime to guide me through life on my own, which created many more obstacles (such as the lack of a carer when unwell) but also so many possibilities and wonderful experiences that it was worth it a million times over. I threw myself into my studies, and even more fervently into my social life. Time passed, my lungs worsened. I commenced overnight oxygen and was presented with a formidable machine which concentrated oxygen out of the air and pumped it out through nasal cannulae which smelled strange and felt weird on my ears. I decided I would not be intimidated by this large and noisy machine and named it Claire, after a girl I once met who was incredibly loud and somewhat annoying.

During one fairly regular hospital admission, after several weeks of IVs which weren’t really denting my breathlessness, my consultant quietly asked if anyone had ever spoken to me about transplant. I muttered in a somewhat nonchalant manner that yes of course I had heard of them, that’s what really ill people have. It was only later that night my mind began to wander and it suddenly occurred to me that he may actually mean in reference to me.

Several months of ups and downs later, I was referred to Harefield for a transplant assessment. I was told that a transplant may bring me a better quality and extension on life. That 50% people post transplant reach 5 years. That without one I probably had about a year left. I joined the waiting list.

Nearly two years later, after several severe collapsed lungs, a few near misses which had my family rushed to my bedside, and an acute feeling all round that we were running out of time, I received that call that I had been hoping and waiting for.

I love my life. I am incredibly grateful for what I have got, what I have had, and what lies ahead of me. But that doesn’t change the fact that Cystic Fibrosis will mean that my life is considerably shortened. And for far too many of my friends, it has already claimed their lives.

Three young people die of CF every week. I now have a second chance, some precious years, which many never got. But what I want is for children born today not to face this difficult uncertain future. I want a cure. I want treatments to improve. I want support such as things like the Joseph Levy Memorial Fund which is part of the CF Trust and which saw me through my toughest financial times at University to go on supporting people with CF who are trying to live their lives.

This is why I am walking in aid of the CF Trust. Please give whatever you can.

Thank you.