CF | Andy's Story

Hey! So a couple of weeks ago I featured Lily's Story about living with CF and today I have Andy who was kind enough to write something for the blog. It's a little longer than my usual posts but it's a fab read, you'll learn a lot about CF...I think Andy explains it a lot better than me, especially the medical side! I think you'll learn a lot about life in general too, I think we could all do with having a bit of his attitude!

Hi guys! My name is Andy Ward, I’ve been asked to write a guest blog post for Josie so here goes. I completed an undergraduate degree in Media and Popular Culture at Leeds Metropolitan University in 2012 gaining first class honours and a trio of awards for best dissertation, outstanding contribution to university and an award for outstanding student of the year. I’m a mature student aged 35 and I’m currently studying for a Master’s degree in Cultural Studies at The University of Leeds. This all sounds very normal, right? Well, I also have a life expectancy of 40. What? Yeah, you read that right. I have a life expectancy of 40 years old due to being born with the fatal genetic lung disease Cystic Fibrosis. Never heard of it right? Or you have, but you don’t quite know what it is yeah? Don’t worry as most people are in the same boat as you. Read on and allow me to illuminate my unique situation and perspective on life...        

            I guess from meeting new people throughout the entirety of my life one question has always cropped up that I’ve been asked; what is it like having Cystic Fibrosis and how does it affect you? I think the short and abrupt answer I’d love to give sometimes is that quite simply; it REALLY fucking sucks at times and massively so. However, I’m not one to focus on the negatives of living life with the illness even though there’s been many a time when I’ve nearly given in, however I don’t want to be like most people are these days, pissing and moaning at their own self-made problems (number one pet hate). I’m sure we all know plenty of people like that and it is just not for me. I always choose to see the positives in my situation, always have done really and that mindset has allowed me to succeed where most others would fail. I mean, after all, the moments that you could spend moaning and upset about something that there’s very little you can do to change could be spent having a good time and laughing, enjoying life to the fullest. In short, I’m just not into being a whiney bitch about it really. I am getting ahead of myself though as I should probably start by telling you exactly what Cystic Fibrosis is.         

Cystic Fibrosis (CF) is a genetic lung disease which mainly affects the lungs and pancreas clogging them up with nasty gunk that is similar to the stuff you cough up when you have experienced the worst cold or flu you’ve ever had. It’s permanently like that for us though. No respite. No getting better. No popping Lemsips and cough medicine for a few days until it clears up and you can breathe properly again. Ever. We’re quite literally drowning on the inside really and the stuff that our bodies produce fills up our lungs and will kill us one day, causing recurrent and frequent lung infection and damage through our lives until we can breathe no more and require a life-saving double-lung transplant to survive. As you can imagine this can make breathing on its own a tricky endeavour, the gunk, or ‘sputum’ as it is officially known is constantly being produced whether you’re awake, asleep, active or inactive and it affects everything that we do. Breathing, sleeping, walking, running, sitting, standing, shagging, you name it and CF will find some way to affect it. It also affects eating too; we find it incredibly hard to put weight on like a normal person does due to pancreatic insufficiency. That bit isn’t too bad for me personally though as it means we can eat whatever we like and it will have very little consequence on our weight. At least there’s no risk of me or any other CFer turning up on Fat Club or some other weight loss tv programme then, silver linings and all that. FEED ME.   

Now, in order to be lucky enough to be born with Cystic Fibrosis your parents must both possess the CF carrier gene which 1 in 25 of the UK population do. If you have the carrier gene then there’s a 1 in 4 chance that you'll produce a child with Cystic Fibrosis. The disease itself is incurable despite recent significant advances in gene therapy treatment designed to isolate and potentially fix the faulty CF gene and there are currently just around 10,000 people living with Cystic Fibrosis in the UK.

Ok, about that pesky life expectancy bit. It is just a statistic, but statistics do exist for a reason and unfortunately at 35 I’m considered to be one of the ‘Old Guard’ in the CF community which is a strange feeling indeed, being that, for you normals out there 35 is considered to be in the prime of your life for most of you. I’m now clinically at ‘end stage’ which means in the next 2-5 years my medical team expect my condition to deteriorate to the point that I will be facing death and will need a double lung transplant to carry on living. I’ll say more about that later though. Why is the life expectancy such a low one? Well, due to a weakened immune system because your body is constantly fighting CF every single day of your life, your lungs are always at risk from serious infection and inevitably, despite your best efforts you do catch colds and bugs easier than most people. These bugs then have the knock on effect of causing extended periods of serious ill health and permanent lung scarring. Recently, one slight bug that I had side-lined me for two months and I required 6-8 weeks of horrible, nauseating antibiotic treatment along with a three week stint in hospital which, as you can imagine, wasn’t fun at all. My life ground to a halt once again. When these periods occur there’s always the chance that with each new bout of serious ill health your lungs will become more permanently damaged. And that’s essentially what happens, over time your lungs become so damaged that you get to the point that you are terminally ill, can no longer function and require a life-saving double-lung transplant to survive which itself isn’t a straightforward procedure. Essentially, you’re in a limbo state between life and death. To put a touch of realism on my current state of health, my lung function (the amount of air in my lungs that I can process and breathe with) at the moment stands at between 30-35%. In real world terms this is around the same amount of air inside four empty cans of Coca-Cola, two for each lung. Just imagine that for a moment.

So what has it been like growing up in this unique situation? I was diagnosed with Cystic Fibrosis at four days old as I wasn’t putting weight on like a normal baby does. The doctors at St. James’s Hospital in Leeds decided to do what they call a sweat test on me; this procedure analyses the amount of salt on a person’s skin to diagnose CF and as expected my test came back as positive. I can’t imagine what this news must have been like for my mother, a 17 year old girl who had no knowledge of the disease had just been told that her first born child had a terminal genetic illness and would be lucky to see his 18^th birthday. It must have been crushing for her. Thankfully, the staff at St. James’s were incredible and they looked after the both of us incredibly well as I spent the first 6 months of my life in hospital whilst the doctors attempted to find the right cocktail of drugs and treatments to enable me to leave and start my new life in the world.

As a child I just remember that for the most part, things were relatively normal for me. I still did all of the normal things, went to school, had fun and lived life as a happy child as many of my childhood photos attest.

The normality was only interrupted when I became ill and had to go into hospital which I remember to be more frequent when I was a kid. CF medicine and treatments have greatly advanced since 1978 but back then it was trial and error with the limited drugs and knowledge to keep me stable, but again due to a fantastic team at St. James’s which was spearheaded by Dr. James Littlewood (aka Big Jim) I was in good hands and managed to go through primary, middle and then high school without many problems. I mean, I was known to everyone at every school I went to as ‘the poorly kid’ or ‘that kid who goes into hospital a lot’ but I never chose to hide my CF and was very open about it all which I think helped fellow children understand. I wasn’t part of any clique like you get at most schools, not a jock, or a sporty kid, or ‘the fit one’, or anything like that but everyone knew me. I was very lucky as a lot of kids experience bullying and disabled children found school harder than most back in those days. I also owe the normality of my early years to my amazing mother. She never smothered me like I’ve seen a lot of CF parents do to their kids, she just let me get on with it all and trusted me, nurturing my independence and strong will which I can honestly say has saved my life countless times over in the past. I was never given an excuse because of my CF which instilled in me a work hard mentality that has stayed with me until this day and for which I am eternally grateful. Cheers mum.                                                                           

I guess things started to change more for me, or I started to notice how others viewed me differently because of my CF during my teenage years. As well as the trials and tribulations of puberty to deal with I had to consider my place in the ever widening world that was laid out in front of me. Many thoughts often racked my mind, ‘’who am I?’’, ‘’what do I want to do with my life?’’, ‘’what CAN I do with my life?’’, ‘’will I have a life?’’, ‘’when will I die?’’ and so on. Not very cheery I admit, especially when most teenage boys were concentrating on new and interesting ways to masturbate furiously but that’s CF for you, always fucking your shit up. I noticed that it would sometimes affect me in developing relationships; girls would be scared to get close to me, or would lose interest once I opened up about having CF and explained it to them – they’d pretty much think I was going to die on them which was ridiculous and a bit of a cockblock. Pisser. That perception has never changed into adulthood either although it doesn’t matter now as I’m happy and settled. All being said though I had a relatively normal teenage life considering it all despite that one time when I was run over 4 days after my 18^th birthday (if it wasn’t for bad luck then I’d have no luck!).             

I mean, I’ve been fairly lucky compared to a lot of people with Cystic Fibrosis. I’ve managed to stay fairly well for most of my life, only enduring the occasional admittance into hospital for a serious exacerbation of my condition. I go in regularly for two weeks of intravenous antibiotics every 3-4 months and that’s something that I’ve done for years. It’s incredibly boring and horrible but I just get on with it as after all, I need to do it every now and again to be able to continue to be able to live. The thing is during the years growing up I’ve lost hundreds of friends to the disease. In fact, I can’t even remember them all now, not their faces or their names. I don’t know why. I only remember the few that I was really close friends with for a long time and even then I can’t really remember dates and how long it has been since they passed. It’s probably something to do with the alarming frequency that death hits you once you reach adolescence when you’re transferred to an adult CF unit. As a child you’re simply told that your ‘friend has gone home’, and you buy it because you’re a kid. You know that you’re poorly and not like other kids but you don’t know the full intensity of what having Cystic Fibrosis means, and that’s probably a good thing.

Most of you will probably live your lives with no death in it, or it’ll only show its face when your nan or dog dies, something very ordinary, expected and normal like that. For those of us with CF, death is as much a part of our lives as life is and it is always with us. I know some people respond with stereotypical sayings such as, ‘’you could get hit by a bus tomorrow’’, or, ‘’we’re all dying’’ and so on but I find that’s just them trying to brush off the finality of the disease with a chirpy comment when in reality they don’t know how to discuss that aspect of it, being that death and talking about dying is still the great taboo in today’s society. That has to change. There is no cure for CF. Nothing. It will kill us all. It will kill me. What makes my perception of mortality and death different from everyone else’s perspective of death is that I share an intimate and lifelong relationship with my death. I feel it gurgling around in my lungs. I hear it crackling in my airways. I feel it strangling the breath out of me when I have a coughing fit. I see it when I spit it out of my lungs and into a specimen pot. When I’m in hospital with a bad infection unable to shower myself without assistance, or without the energy to go outside to walk around I wonder if this is the time that my death has come calling for me? Every time I try to fight back, I don’t want to die yet. I really don’t. I have plans for my life, lots of them. There’s been so much I haven’t been able to do in my life because of the limitations that CF has placed on me despite doing pretty damn well so far and having absolutely no complaints at my achievements. I’m just not ready yet. Fuck that.

                                                                                                                                     

It’s getting harder now of course, and I have to do some things a lot slower or with more care or planning but when you’re born with CF you develop a knack for adjusting. You have to as you’re constantly redefining what you can and can’t do every single day. It’s like you live two completely opposite and contrasting personas within one body. The person that you are when you’re relatively well, able to do most things albeit with ever increasing difficulty as you get older, and the person you are when you’re ill and completely dependent on support and care from your loved ones and family. It can be really hard striking a balance between those two paradigms, especially as there’s lots of frustration and anger when you inevitably do become unwell. However, I have great support around me to make the dark times that little bit brighter so I just knuckle down and fight as that’s all I know how to do really. Thankfully my luck or my force of will hasn’t run out yet and I prevail to this day. Go me.                       

  On a final note, another question that I’m often asked is, "if you could choose to not have CF then would you?" My answer often surprises people, no I wouldn’t. That may sound strange to people without the disease. Despite the daily intensive treatment that eats up hours of my time and energy, despite watching my friends die of the same disease around me, despite seeing the pain and tears of my loved ones every time that I’m snatched away from them and taken into hospital for weeks at a time, despite the moments when I’m so ill that I can’t brush my teeth or walk and breathe unaided, despite being treated differently by society for being disabled and even more so for my particular disability being an invisible illness, despite there only being 35% of people on the organ donor register in the UK – I wouldn’t change a thing. Why? For better or worse CF has given me many things, a shortened lifespan and indeed a shortened life in lots of ways BUT, and this is a big but (caps lock means srs bsness) it has also given me so much! I appreciate EVERYTHING. Every sunrise, every moment of laughter, every breath I take, every single second of every single day. Everything.      

                                                         

Most people don’t and spend the majority of their time wondering why they’re so unhappy chasing the stupidest of things or filling their lives with stuff or people that truly don’t matter. The smallest things mean the most to me; I’m really not obsessed by material goods or wealth, in fact they bore the shit out of me. Being part of the crowd bores me. Boring people who don’t appreciate life bore me. All I need to be happy is to wake up and feel good, and to be surrounded by the people I love. It’s as simple as that. I absolutely think that CF has given me the ability to see life and all of its glory in a purer sense than most people do and I want to gorge myself on the joy of living and having a damn good time. If you know me in person then you’ll know that I possess an absolute savage wit, outrageous opinion and I use it to take the piss out of everything too. I don’t live my life with any fear or boundaries, or very few indeed when compared to everyone else. I just don’t believe in it. Those things that you wish you had the stones to say? I’ll say them. It often gets me in trouble but what the hell, who cares? I have CF to thank for that. I guess that this mind-set has been ramped up into overdrive even more since I was assessed for lung transplant suitability last August following an awful start to 2013 where I spent the first 5 months in and out of hospital due to a combination of the worst winter in 50 years, port and chest infections and an extended period of serious ill health too. It looked as though my time was running short but with some new treatments and amazing support from my incredible woman and my family and friends I recovered and passed my assessment with flying colours. I’ve since generally been a lot stronger and feel incredible when compared to this time last year when I had to take a leave of absence from university and faced the uncertainty of lung transplant assessment. I live to fight another day and have a good prognosis for the next couple of years, barring any disasters. I love being alive and take very few things seriously because I know how quickly and cruelly it can be snatched away from you and as the clichéd saying goes ‘life is for living’ so I’m going to damn well live it as much, and as well as I can in the time that I have left. Please take a minute and think about supporting The CF Trust – the UK’s national charity supporting people with CF and undertaking ground-breaking research to save the lives of me and my friends, they really do receive very little awareness or donations at all and are a fantastic organisation. I’d also like to ask you all to take a minute to think about signing up to the organ donor register too as any of us at any time could develop an illness that would require an organ transplant to save our lives. You should also discuss your wishes with your friends and family so that they can follow them in the event of your passing.

Thanks for reading, if you have any questions then follow me on Twitter at: @AndyWard1978

Or, catch me on my blog which I sometimes update: http://cybercystic.blogspot.co.uk/

Huge thanks to Andy! Hope you found it an interesting read and that you learnt a lot!

Josie x