.. sweet dreams Holly xxxx

I know I’ve been terrible and I haven’t wrote on this for a while.. a really long while but could you forgive me and just allow me to get this out?

You all know I’ve moved to the adult CF centre. I made friends with two fellow cystic fibrosis patients.
Laura & Holly.
Obviously due to cross infection we were never allowed to mix and meet face to face. However if you left your door open you could see patients going for a walk with physio or bobbing out somewhere for abit.
I got speaking to Laura first as she added me on facebook, she was lovely and it was just nice to speak to somebody who completely understood. COMPLETELY.
Laura is on the transplant list and is waiting for her call. I thought I’d ask her a few questions and just talk to her about the whole thing for my own curiosity with the whole transplant situation being so ‘real’ to me now.

Soon after I had another friend request off a girl named Holly, now this one I recognised. I’d seen her popping out for abit with her boyfriend. She’d be sat in her wheelchair with her oxygen mask on and her woolly hat while her boyfriend pushed the chair. I’d also seen her going for a walk with physio, oxygen mask intact and drip stand being pushed by either a physio, friend, boyfriend or family member. She’d always smile as she walked past my room.
I accepted her request and got chatting to her straight away. We never really spoke about CF, we mainly talked about online shopping as I was an online shopping virgin and had never even contemplated shopping on the internet before.
She told me I should create a paypal just to be safe before I spent any money.
She introduced me to truffleshuffle :’)
Both Laura and Holly were in rather frequently. I tend to be in every four week for 3-4 week on IV’s but Holly & Laura’s admission lasted longer and their time out of hospital was much shorter.. usually lasting weeks or even days. I was admitted onto the ward end of November with swine flu and so I was in hospital for 5 week. Sometime in December I decided I’d start a facebook craze and made all my friends turn there profile pictures to the organ donar card till the clock struck midnight on new years eve. All in order to raise awareness of organ donation and the generous and selfless Christmas present of all .. the gift of life.
It went phenomenally well and I even managed to get onto local news on Granada reports ITV.
My two new friends and I really appreciated everyone’s dedication and both Laura & Holly joined in my campaign by changing their profile pictures.
I got out in time for Christmas and so did Laura.. however, she had to go back in soon after due to picking up a nasty virus. I’m unsure about holly.

Sadly, Holly passed away last week, she fought so very hard right till the end. She had her close family surrounding her and therefore was in a room full of love and devotion. I know she is no longer suffering or having to fight and that she’s now a shiny star in the sky.
But it still leaves an ever so bitter taste in my mouth about how cruel and unfair life is. Holly was just 19! NINETEEN years old.
That’s two years older than me. That’s far too young.
It’s made me very resentful to the people who disagree with organ donation or those who don’t sign up. Does that make me a bad person?
Everyone is entitled to there own opinion.. I am fully aware of that.
I just don’t see how someone can even have a second thought about saving somebody’s life. In such a selfless act as donating your organs once you no longer need them. I just get told to ‘hush’ with my feelings though as it’ll upset people who are just expressing their matters of freewill.
I have a strong opinion on ‘Freewill’……. I want to just warn anyone who may disagree with organ donation that they may find my opinion on the matter a little abrupt & blunt. Apologies.
Allow me to express my matter of freewill…

Why just sit and let people die for the sake of allowing your organs to then rot underground or burn when you get cremated? It’s blunt but it’s true.
I wish so hard that people realise how serious the whole thing is. Organ donation should not be an option we choose to take it should just be a general thing that is carried out when someone passes away. How many lives would be improved? How many people would live much longer & fuller life?
Yes I know that transplantation doesn’t always have a happy ending but isn’t it worth the risk?
It isn’t fair. Holly worked her arse off all her life to get some new lungs and she never got them.. where is the freewill in that?

Yes I am probably very biased in my opinion. However I’ll be honest with you all and lay out everything on this blog..
It scared me.
It scared me knowing how young she was, knowing she didn’t get to live life to her full potential post transplant as she never got the chance.
I was shocked.
It shocked me as I really did have it in my head that Holly would get that call she’d been waiting & fighting for. I really did believe that it’d come and she’d be able to carry on living a better life without the horrid lungs. I had no idea she was so ill.
I was sad.
It was a big shock to my system.. true I didn’t know Holly very well atall and I didn’t meet her or know her very long but when you share something like the understanding of being a young person who is so ill and having there life put on hold, I think a bond is created.
I was determined.
I’m determined to make every single person I know fully aware of organ donation and how crucial it really is.
I think if everyone put their self in my shoes, in Holly’s shoes, in Laura’s shoes or in my friend Victoria glen’s shoes.. you’d soon be more than willing to save lives.

I am keeping a smile on my face and my head up as Holly is no longer suffering or having to fight and she is now breathing easily and spending a fortune online shopping somewhere in her dreamland ☺
I also know that there are some very happy endings with regards to transplantation ☺
Victoria Glen is my inspiration to keep fighting for that phonecall and those brand spankin’ new shiny lungs as she is doing ever so brillianly. Her blog is:-

Thank you for reading & allowing me to just let it all out.. I feel better now.
Much love to you all. <3
Take care, sophie xoxo
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  1. Aw your sweet :)

    I know how you feel lovely having had David pass away recently was a complete shock to me, as I was 100% sure that he would get his transplant this year!!!

    I'm not too fussed about people deciding against it as like you said it's there choice and when it comes down to it more often than not people would give their organs but just haven't got round to it. It's the people who haven't made the decision who bother me or have said they would give them but failed to take the three minutes to sign up. Apathy is what kills and as long as you make people aware of how crucial it is and get them to think about it then your doing an amazing job.

    Keep blogging lovely I like to read your words!!

    V x

    P.s Didn't realise you had swine flu, not pleasant at all!! Hope things are improving xx

  2. So sorry to hear that another one of lifes fighters has lost her battle but she is now at peace and breathing easy!!! and looking down on you guys to carry on the fight so you carry on babe letting everyone know the importance of being a donor i think that when we register a new life we should automatically register to donate organs as life and death go hand in hand!!!!and like you say everyone is entitled to there own views but sometimes people need to take of the roses covered glasses and look at the real world were people like yourself are in need of the gift of life!!!!! when theres is done. please keep on writing as this also raises the profile. Love you more than life its self my beautifull butterfly.<3.<3.<3.xxxxx

  3. Glad to hear you are doing OK Sophie, so sorry to hear about your friend though. People can never understand something that doesn't affect them but they always seem to have silly opinions on these issues, it makes me mad too xx