Day 19

Lets start off on a random light note, before we head on to the results of a meeting had by myself, my parents, a nurse and my CF consultant.

Just been watching Sir Ian Mckellen on a catch up of the Jonathon Ross show. Some of my favourite films are the X-Men movies and my favourite character being Magneto played by the wonderful Ian Mckellen!
Don't you just love his voice?
I could listen to it all day long.
I'm very excited to hear a new X-Men movie is on the horizon!
I'm a little bit of a Marvel nerd and love every film i have seen by the captivating writers!
Marvel beats DC in my personal opinion.. however loved batman.. hate superman!

Anyway, back to reality. Take my cape and glasses off (i hide my nerdy side in a corner)

Today i had another discussion with my CF consultant, this time, my mum & dad were present so they could take in everything and also ask any questions they had.

I wanted to have the first discussion on my own so that i could figure out what i wanted all by myself with no influence off anybody else but me and the information from my doctor.

My mind was already made up as soon as the words, "you are in the window of opportunity for transplant, you don't want to miss the boat" came out of his mouth.

Numbers wise (i,e lung functions and sats etc) i have been in the window of opportunity for a long time.
BMI wise, i am in the ideal range which has took me a while to do but i got there and have stayed there!
Lungs wise, they have an obvious amount of damage that can't just be mended and fixed by the amount of antibiotics they have thrown at me.
Quality of life wise, i spend more time in hospital than i do my own home.

This time last year i was managing 6-7 week out and needed just 2 week of IV's. I'd go home and do all the things i wanted to do with a moderate amount of ease for someone with my lung capacity.
We move forward to the present and i go no-more than 2-3 week out and stay in for 3-4 week. Those 2-3 week spent at home are a struggle and by the 2nd week out, I'm no longer managing tasks such as having a bath, walking upstairs or getting ready without needing oxygen to recover. I put off going out and going places due to just feeling really crap chest wise. It's not enjoyable and so staying at home and chilling out is far more appealing.
By the 3rd week, i have lied and said I'm still not coming in for IV's as I'm "not too bad" then i am spending most of the day in bed doing clearance and nebulisers and just trying to make my chest feel sufficient enough to want to move. By moving i mean, walking downstairs where i will stay all day in my pyjamas only moving when my bladder can no longer withstand holding in anymore urine because walking to the bathroom which is conveniently in the next room to the living room is just too much effort. It's not what a 19 year old girl should be doing with her life. It's not what anyone should do with their life.
Appetite is usually nothing but a nibble of a sandwich at lunch (which is usually brought back up through violent coughing) and a child's portion at tea (which is usually brought up via violent coughing at night time physio)
Absolutely wiped out of energy, if i am lucky enough not to be up coughing all night, I'm fast asleep before my head hits the pillow.
That is my life.

I sound like a pretty ideal candidate for transplant right?
Get me on the list asap right?

There are so many hoops & hurdles to come before i am even included in a huge discussion by all the transplant team to decide whether i will be placed on the active transplant list.

Firstly, my consultant is to write a letter tomorrow to send me over for transplant referral.
This I'm told can take up to 4-6 weeks before i hear anything from it.
I will then have a transplant assessment which has many tests and scans and disscussions with various people from the transplant team.
I have a few "red flags" though that i am a little concerned about, that may make the transplant team be put off placing me on the list.

Thank fully, a lot of hard work, perseverance and determination means my compliance with treatment is no longer one of those red flags.

I have two major red flags.
Firstly, being my previous lobectomy surgery and the complications that can cause during the transplant operation making it too risky to perform a transplant.

The second is a bug that i grow and have done for around 7 years now. It's called ralstonia.
I'm not certain as to why this is a bug that makes the transplant team a little weary but i think it's due to how stubborn and aggressive the bug can be.

The thing that works well for me with regards to the lobectomy is that the surgeon who performed it back in 2008 was an absolute angel and was pretty sure she'd done a good enough job to not hinder my chance of new lungs in the future.

As far as the bug goes, I'm not a doctor and i don't know anything about bugs but what does stand well for me is that i still respond to anti-biotics; as stubborn as this ralstonia may be.. i always bounce back after IV's. i am hoping this will stand well during discussions with a transplant consultant.

I haven't had the tests and scans done so i don't know if any red flags may pop up in any of those but going into this regardless of the assessment, those are the only red flags my consultant has raised.

As positive as i need to be and am, i am also staying very realistic in knowing these red flags may result in the team deciding a transplant would be too risky to perform.
I'd accept that and would just have to continue doing what i am doing now which is fighting as hard as i can!

So Doctor Bright Thomas is writing my referral letter tomorrow and the ball is now rolling for which will hopefully be the start to my transplant journey.

Day 19:- on the floor

Alfie lee brown, my godson.
I know that this isn't on the floor.. it's actually on the hospital bed but i just love his cheeky smile and sheer joy in his eyes.. no not at the pure love and admiration for me, his beautiful god mother! No it was due to a light switch flicking on in his head; as he comes up with the great idea to pull my oxygen mask and then let go of it.. thus me being slapped in the face!
Sneaky little cub.

Time for bed now, it's been a very long day!

Sweet dreams bedbugs..
Sophie xoxo

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  1. This is the start of your journey babe!!!!! And we will all be with you every step of the way.. ii am sooo proud of you... and admire your strength!! Passion and pure determination to knock down every hurdle that is put in front of you!!!!! And still keep that gorgeous smile on your ya millions n more...Max.xxxx

  2. Sophie you are an inspiration... simply amazing ... keep the positive thoughts going :)xxxx

  3. sophie u are an amazing young lady. keep fighting xxxxx

  4. thank you for all of your really lovely comments.. i am a bit rubbish when people say things like inspiration and amazing.
    what do you say to that? :)
    i guess all i can say is thanks for your support it means a lot to me and it's lovely to know people are cheering you on and reading your posts!
    take care xxxxxxx

  5. Sophie this is so inspirational you are so strong keep fighting all my love xxxxx<3 xxx