Sunday, 14 July 2013

Cystic Fibrosis, A Guest Post.

I love guest posts here at Big Fashionista, in fact I encourage them. I am lucky enough to have a platform, and if people want to use that platform to spread awareness then I am always happy to let them. I speak to Andy on Twitter and his sense of humour, while fierce and sharp, is at the same time what makes him a great person to know. I offered Andy the chance to guest post as it is a subject very important to him and many, many other people out there. 

Over to you, Andy. 





Hey y'all.

First of all before I get cracking, a huge thanks to Big Fashionista for giving me this opportunity to do a guest blog in order to hopefully raise some awareness of a topic which is (literally) close to my heart (and lungs).

Right, now that's done I can get going. Greetings everyone, my name's Andy and I have a life expectancy of 40.1 years old. I'm 35 this September.

Shocking huh? The reason I have this lovely number/death sentence hanging over me is because I was born with the genetic disease Cystic Fibrosis which some of you may have heard of. As I said it's a genetic disease (in fact THE most common genetic disease in the UK fact fans) which means that you have to be born with it in order to have it. In order for that to happen then two people must be carriers of the CF gene then any child they have has a 1 in 4 chance of having CF.

So that was me, I was the 1 in 4 baby.

I was diagnosed 4 days after being born as I wasn't progressing and putting weight on like a healthy baby should so the doctors decided to do what they call a sweat test which tests for a wide range of diseases and illnesses and of course, it came back as positive.

From that moment my relatively short life completely changed forever and my parents were told that I wouldn't live past 18 years old. Thankfully, I've proven that statistic wrong. *phew*

People often ask me what's it like having Cystic Fibrosis and I often find it hard to give them an answer in some ways because I've never known what it is like to have a normal life so I have nothing to compare it against really.

Before I start rambling I should probably tell you what Cystic Fibrosis is exactly. It basically clogs up your lungs and pancreas with horrible, thick sputum that causes recurrent infection and permanent damage to your lungs. You can't digest and process food and nutrients properly due to the effect it has on your pancreas and therefore have trouble putting on and maintaining weight which leads to many people with CF suffering from malnutrition. You can also develop a whole host of CF related illnesses, diabetes and liver disease to name but two. Oh, and if you're a male born with CF then it also leaves you infertile due to blocking the vas deferens in your ballbags. I should point out that it in NO WAY affects your sexual performance or ballbags and dinkle in any other way though, just in case any young 'uns with CF are reading this and fear their sexual life is over. You can relax.

There is NO cure for Cystic Fibrosis.

From birth, intensive daily treatment regimes and frequent hospital admissions for weeks every couple of months have been the norm, as has been my daily routine. Wake up, take medicines, do nebulisers to open my airways and clear my chest, do physio to clear my chest, take more tablets, do inhalers, eat breakfast, get a bath and out the door you go. Repeat again and again and again. It's relentless and never ending. And that's when I was young and relatively healthy, even for someone born with Cystic Fibrosis. It's kind of like being stuck in the shittest job you've ever had in your life with little chance of promotion. It truly is evil personified.

You see, I'm currently standing at a crossroads in my life. THE biggest crossroads ever in fact.

Due to the damage Cystic Fibrosis has wrought on my lungs over the years and the recurrent infections I've had my lungs have now become so damaged that in August I will be assessed to see if I am viable for a double lung transplant at Newcastle Freeman Hospital which is the transplant centre for the north of England.

My lungs are currently working at around 30% capacity. In order to illustrate what that means in real-life terms that's about the same amount of air as in 3 empty cans of pop.

How does this affect my daily life? Well, I now need constant oxygen 24/7 via a nasal cannula I wear to help give my lungs a boost so I'm connected to an oxygen compressor which sits in the hallway of my flat. It plugs into the mains and extracts air before converting it into pure oxygen. It's kind of like being a dog on a lead in some respects. If I wish to go anywhere then I have to use portable canisters which sit in a backpack I wear which is great as it allows me *some* freedom to go out and do things with my friends and loved ones if I am well enough to do so. These only last for 5 hours at a time though so planning activities is a major hassle and has to be organised with military precision at times.

I also now need to be fed overnight via nasal gastric tube which I slide down my nostril every night into my stomach and which is connected to a feeding machine. As I sleep it slowly pumps nutrient rich supplement solution into my stomach so I can rest and gain weight at the same time. I manage to get an extra 1600 calories a night.

Every day is different, some days I feel stable enough to do some normal things but other days I can be seriously out of breath doing simple things like getting dressed and bathed (having a wank is fun on those days, believe me). I recently spent a month in hospital when one of these lovely exacerbations of my CF came about and knocked me on my arse. I could barely stand up and dress myself and had a serious infection kicking my arse and this was all from being near someone who sneezed without covering their mouth in WH Smiths one day (fucking tosser). The breathlessness is dangerous as it indicates a tachycardic heart rate because your lungs and heart are not getting enough oxygen, which can in turn induce a heart attack if not treated quickly. Big no-no to that then.

I suppose the worst bit of having CF is having to constantly deal with close friends you've made over the years from constant admissions into hospital dying from it. We're exposed to death very early in our lives and it is a constant, natural part of life for us. I honestly can't remember how many friends I've lost, it must easily be over a hundred over the years and it doesn't get any easier to deal with. In fact, just this week the lovely Emma sadly passed away from CF at just 20 years old. It happened quickly and unexpectedly and a lot of people are hurting very much right now as she truly was an incredible young woman. Emma was in the same position as me, she had gotten to the point where she urgently needed a double lung transplant to save her life, she was on the lung transplant list waiting and hoping that the call would come which would save her life. Tragically, it didn't.

This is Emma on BBC News only a few short weeks ago doing her bit to raise awareness of organ donation and Cystic Fibrosis: 



 
It has killed many of my friends and it is killing me. Far too many amazing people have died too young.
 
I guess I'm hoping that this guest blog will inspire more people to sign up to be an organ donor. This week is in fact National Transplant Week 2013 in the UK and if you check out the #NationalTransplantWeek2013 #OrganDonation and #PassItOn hashtags on Twitter you can learn  more about that and the work that is being done to increase the amount of people on the organ donor register. 
 
Currently 96% of people say that they would take an organ transplant if they needed one but only around 35% of people are actually signed up. Now, if that's not a damning statement on the selfish nature of contemporary society then I don't know what is. I'm on the organ donor register myself despite most of mine being battered and unable to be used by CF so what's your excuse? They can take my corneas to help give someone the gift of sight so they are more than welcome to them should I die. Most importantly though, if you are signed up on the organ donor register then you MUST inform your relatives that you wish to donate your organs in the event of your death as if you don't then they can still block the procedure although the NHS is currently discussing overriding this which I'm personally all in favour of.
 
If my assessment goes well I will have to decide if I want to go on the transplant register. What that means is that once I am green lit to be viable and active on it then I statistically have 2 years left to live and that I could be called for a transplant at any time during that period. For those of you who may be thinking, ''nice one, I hope you get one and get cured mate'' then that's not the case. Statistics currently say that 50% of people who have a double lung transplant only survive for 5 years afterwards due to your body eventually rejecting the organs. I'll also be on strong anti-rejection meds the rest of my life which carry an increased risk of developing cancer if you're exposed to hot climates (probably a benefit that I live in England then with our glorious two day summers - ha!) and I will still have Cystic Fibrosis. 
 
What a double lung transplant would do for me is akin to putting a new engine in a car. I'd still have all the other crap to deal with but I'd have new lungs and hopefully a new life with them.
 
So you see the odds are pretty much stacked up against me whatever happens. That's always been the case though and I've always known since I was a young boy that I wouldn't live as long as everyone else and that whatever happens, CF will eventually kill me one day and I'll die young(er) than my peers and friends.
 
I don't let it bother me and I try my utmost to enjoy every second of my life with my wonderful girlfriend, family and friends because well, what else can I do? A life spent miserable is a life spent wasted and I'm not one for wasting life. It truly is precious whatever your situation.
 
Another question I sometimes get asked is would I choose to not have CF if I could go back and live my life again? The answer is no. Some people may be surprised to read that but I wouldn't change it for the world, despite all the hospital admissions, treatment regimes, death, misery and constant crap it brings into my life it has also given me so much. An incredible viewpoint of life and the world around me, I take NOTHING for granted when so many normal people do. I don't waste my time on people or situations that are pointless and find the joy in living every day in whatever way I can so I feel very grateful in a lot of ways. 
 
You see, all the clich├ęs are true, you do only get one shot at life. I know this and I feel it every single second of every single day. I feel it when I'm hacking my lungs up and I'm so breathless that my heart is racing and I feel as though my head is going to explode. I feel it when another friend is cruelly taken before their time simply because they were born differently to everyone else. I feel it when I look in the faces of my loved ones and I see their hearts breaking because they know there's very little that they can do to help me but just hope that I get better.
 
I just feel it. Always.
 
I'd like to hope that I'm around to feel some more for a lot longer.
 
Thanks for reading.
 
Andy.
 
If you want to sign up to the organ donor register then you can at:http://www.organdonation.nhs.uk/
 
If you want to know more about what Cystic Fibrosis is then you can here:https://www.cysticfibrosis.org.uk/
 
And here's a local press piece I did for Cystic Fibrosis  Week 2013 a few weeks ago:http://www.radioaire.co.uk/news/local/leeds-man-faces-life-threatening-wait-for-lungs/
 
And one which has just been done regarding the tragic loss of the wonderful Emma:http://www.thisisleicestershire.co.uk/just-want-rest-cystic-fibrosis-sufferer-Emma-s/story-19511667-detail/story.html#axzz2YqqVwavj
 
And finally, if you have any questions then follow me on Twitter at @AndyWard1978

6 comments:

  1. A wonderful blog post which reduced me to tears. I know someone with CF so I've seen him struggling to spit up the foul shit from his lungs. Like you, he lives life hard because he has to. In fact we met at a mutual mate's party when he grabbed my vodka off me and chucked it in my face, at which point I punched him as hard as I could. What an introduction!

    I signed the donor register ages ago but have lost my card so I'm going to sign up again. Once I've stiffed it they can pull me apart for spare parts as soon as my loved ones have kissed me goodbye. What a legacy to say you've helped someone after you've carked it.

    Wishing you as many happy years as possible!

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    1. Ha-ha Leah,we do tend (or at least I do)to be obnoxious twats initially,it's a quick way to sort the wheat from the chaff.Some of my best friends are people who wanted to punch my head in when we first met.Saves a lot of time.

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    2. Hi Leah, Dont worry about your lost card, they don't tend to send out cards anymore but you can add it to your drivers licence. Yoou should sill be on the main databas, the key ting for organ donation is to tell your loved ones that you have signed up and that you want to donate your organs if the very worst were to happen. They will always have VETO even if you do have a card in your purse.

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  2. This article really moved me. I lost my daughter when she was just a baby, and though it was the hardest form I will ever sign, I donated her organs. Although at that point there was nothing which could bring me any comfort, I knew that I could save other parents from feeling this way by donating my daughter's organs. I believe that our body is just a shell, that the physical body is not us at all, and so I have no issues with my own body being given to anyone who can find use for it.

    However, I do understand that pain and confusion a parent feels, when you have already lost your precious baby, and it seems you are being able to sign over what remains. I hope no one reading this ever finds themselves in that position, but if you do, I urge you to sign the form. For all my support of the transplant service, I can admit that I paused before I signed the form. At that moment; you are just clinging to their pyjamas,their blanket, their bear, clinging to anything that is left of them. Signing a form to give a part of them away is not what you want to do. But unfortunately there is no form you can sign to bring them back. The only form you can sign is the one that saves the lives of others and the pain of their families. I thought of how any parent would beg you to save their baby's life if they could. I thought of how I would beg. I signed the form.

    It was an incredibly hard time, but six years on, I'm able to talk about it and to feel a little happiness knowing that I may have saved some other babies with that signature.

    When I die, my family all know to expect a good haunting if they don't respect my wishes by donating my organs and enabling me to save other's lives after my death.

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  3. A huge thanks to everyone who has taken the time to read this post and comment, and an even bigger thanks to those of you who have been inspired by it to sign up to the NHS organ donor register - you really have no idea of what an amazing gesture you have made by giving someone the ultimate gift of a second chance at life one day.

    If anyone has any questions about Cystic Fibrosis and organ donation then fire me a tweet as I'll be happy to answer anything so don't be shy!

    I also blog sometimes at http://cybercystic.blogspot.co.uk/ although it has been a while so I need to dust the keyboard off and get writing regularly again.

    And lastly, thanks again Kel. x

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  4. My son has CF, so I know where you are coming from. I signed up for organ donation as soon as I realised he may need one in the future.

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