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.