Ok, so I am posting this
for two reasons, it's just gone 4am on Friday morning & I have been up all night very poorly. I am
coming out the other side now, and literally been weeping for the last hour on
just how I can go from having a great day, to the cusp of a coma & the back
to recovering again, just a little bit sore, very tired & ready for the day
ahead. Sometimes my body even amazes me.
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| IN ITU AFTER MY TRANSPLANT |
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| GAME OF 0'S & X'S ANYONE |
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| HALLOWEEN WITH MY GOD DAUGHTER |
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| MY WEDDING DAY |
The other reason being, I
have had a lot of new friends come into my life recently, and although I don't
sing it from the rooftops, I am one hundred percent honest & happy to talk
about the fact I am not your average skull loving, snake hugging, girl next
door....
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| APRIL 2018 |
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| I LIKE TO BE DIFFERENT! |
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| TWO MORE OF MY KIDS! |
I am just going to break
down what exactly I have, or have had done in the past & list it so that
those who have just started to get to know me can understand why I look like
Mary fricken Poppins carrying around a never ending bag of shite.... Those who
know me & the baggage that follows me you are welcome to snap this shut
& go back to celebrating May the 4th or rather, Happy Friday!
I am literally going to
list it, bullet points as such so it's easy for me to type, easy for you to
read & there will be no medical fancy words - I will also add plenty of
pictures, from my years of madness to right up to this very day (well,
yesterday) to make the read not so boring for you !!
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| 2ND JULY 2011 |
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| HOSPITAL CLINIC |
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| SKUNK MAD |
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| RECOVERING FROM DOUBLE LUNG TX |
So here goes....
I was diagnosed with
Cystic Fibrosis at six weeks old in Bristol.
This was due to a stomach
blockage where I had some of my large intestine removed & have suffered
with blockages all my life. The shit literally hit the fan two years ago this
Summer.
I have Cystic Fibrosis
related Diabetes (never really had trouble with my sugars until now)
I have had my gall bladder
removed due to it rotting inside me when I was 14 years old at Great Ormond Street Hospital.
I also have Arthritis
I also have Arthritis
Osteoporosis
Asthma
Night blindness due to
Zinc deficiency
Insomnia
That good old staple,
Depression / Anxiety
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| BRAVE! |
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| POORLY |
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| MY PASSION |
I had a Double Lung Transplant at Harefield Hospital on 26th July 2012 Following that;
I had an episode of Renal (Kidney) failure in April 2013 requiring hemofiltration (dialysis) for three weeks. I have now got Chronic Kidney Disease & my Kidneys are slowly failing.
In July 2013, I had Heart Failure due to Sepsis.
In November 2013 (quite a
fucking year!) I had the fundoplication operation in St Mary's Hospital, this
is they tie the top of your stomach around your oesophagus so you reduce acid
reflux - which I am now suffering with just as bad as before!
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| ARTHUR, CUVIERS DWARF CAMIEN |
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| ANOTHER LOVE.... |
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| MY THUNDER - ALOT BIGGER NOW! |
Both my arteries in my neck are thrombosed (full of blood clots) as is my left arm.
In July 2016 I had a
massive bowel instruction due to DIOS, adhesions & constipation needing
emergency surgery where they made 'Steve' my double loop ilestomy. (Stoma)
Hoping to have this reversed, it wasn't to be & I had a subtotal colectomy in February 2017. They removed my large intestine, my colon & rectum & changed Steve into 'Stevie Jr' a single loop permanent stoma, about half the size of the one before, but still as unattractive.
Hoping to have this reversed, it wasn't to be & I had a subtotal colectomy in February 2017. They removed my large intestine, my colon & rectum & changed Steve into 'Stevie Jr' a single loop permanent stoma, about half the size of the one before, but still as unattractive.
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| WAITING FOR MY TRANSPLANT |
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| CELEBRATING FIVE YEARS OF MY LUNGS |
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| TODAY WITH THE LOVELIEST BUNCH OF PEOPLE I'VE MET! |
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| MARCH 2018 THE OTHER HALF |
I currently have a
portacath in the right side of my chest (so they can access me intravenously or
take my bloods because I have no veins left) & a 'mini' in my stomach -
feeding device for over night feeds or fluids.
As well as your usual
transplant and Cystic Fibrosis medical treatments & medications, I also
have to now hydrate my body all day and all night with a solution called St
Mark's. I have 1-2 litres throughout the day which I mix with some fruit juice
just to try and take the taste away, then I am hooked up to my machine at night
through my mini and have it pumped in whilst I am hopefully sleeping....
If don't have this I get more dehydrated than a
fish out of water & I collapse & turn blue. It's happened to Stef a few
times, and I've scared the life out of him. And, get this - I am fluid restricted.
So everything else, tuppy (my word for cup of tea) juice, anything like that I
can't have a lot of because everything I eat & drink just flows straight
through into my stoma. I loose vital nutrients & if I drink more than I am
allowed I dehydrate myself even further.
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| EXTENSIONS! |
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| MY HUBSTER & KIDS 2018 |
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| HARLEY @ HALLOWEEN |
My thirst is fierce,
especially in the evenings, sometimes I really can't help myself, you will
notice my mouth is always very dry, but if I give in, I'm only making matters
worse for myself. I think the word I was told was 'balance' that's the key - I
had two in reply, FUCK YOU!
For some reason now my
sugars have really started playing up & I am struggling between hypos &
hypers. The team are fully aware and as always trying to combat this but it's a
work in progress, this is causing more problems with my kidneys.
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| MY BABY GIRL |
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| CHEST DRAIN - FUCK U! |
As is Stevie Jr - the
absolute bane of my life - I had a blockage tonight sadly, I always get them, I
think I know my body enough now just to work through it - sometimes it can take
a couple hours to unblock, sometimes at least 24 plus. I am in agony, I cannot
explain to you the pain, but I would honestly rather go through another
transplant than to have to go through the experience. Obviously the hospital
team have tried to help me, but me being me.... Well lets just say they are
having to write a paper on my Steve episode, they have never come across a
transplanted cystic fibrosis patient with a permanent stoma that has the
problems I do - and they have contacted the whole of the UK & beyond.
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| MAG ARTICLE |
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| BRIDESMAID FEB 2018 |
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| SIBLINGS |
My consultant describes me
as an immensely complicated medical patient. I take that as a compliment.
I think that pretty much
sums me up to a degree, there's a few things I've missed out here & there but to be honest I just get lost
with it all. Oh, I do have a tremor - the 'shakes' due to my transplant medication.
It is really bad at the moment and many, many people think it's because I'm
scared of the animal I am holding because that's usually the only time you'll
see it, (up close showing you something) unless your like my friends & take
the piss out of me because I can't even carry a hot tuppy without spilling it!
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| BEFORE TRANSPLANT |
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| CRUMBLE |
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| KIDNEY CLEANER! |
I assure you it's not
because I am scared, I'm sure if you have only just met me, you will know my
passion in life is my animals. I live for them & it keeps me busy and
absolutely fascinated with life.
I love my tattoo's, this
is for a few reasons I think, one, I am addicted to the procedure, I can't
honestly say it really hurts because I have someone else's lungs inside of me!
Two, I love Dris, my tattooist! Not in that way (Stef & Sadie! LOL) but his
talent is beyond amazing & I literally have pieces of art all over me.
The third reason, I guess
because they are SO GOOD I like the fact people take notice of them &
compliment me on the work I have had done. They aren't seeing the complete mess
the rest of my body is in - not unless I show them. It draws attention away
from my ugliness & focuses on the unusual, yet eye catching detail.
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| NEW YORK 2017 |
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| ITU FEB 2017 |
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| FOR MY DONOR - MAY THE FLAME FOREVER BURN |
Stefan said I am really
hard to buy for, I honestly don't know how, as you can list on one hand all the
things I love - Animals, Tattoo's & the whole Marvel / DC / Nightmare Before
Christmas / The Walking Dead collections, I am absolutely mad on that type of
stuff, films, merchandise, for christ sake I have it all over my body!!
I hope that kind of fills
you in on the medical side of me. I will never let Cystic Fibrosis take over.
To me, I have always been Kimberley. I just happen to have this tornado of shit that swirls around every
now & then. I love life & for some reason over the last five years it
has been a never ending battle to bring me down but somehow I have always got
up. I don't know how, or where these balls have come from, my father fucked off
before shit got real and my mum, well.... (clears throat)
I appreciate everything I
have got, every experience I go through good or bad, but obviously I really
like to try and grab hold of the good as often as I can. I have issues yes.
Some people may think I am a little over zealous? Too forward, too chatty even,
I just try to see the good in everyone & hope in return they see it in me.
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| THE ORIGINAL STEVE |
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| MY ROCK |
Well, I've literally shit
on for an hour now & I'll be getting breakfast soon... I hope you have
enjoyed the read & the many throwback photos, I will write about what I
have been up to in my next blog - thank you all again for reading if you've got
this far ;)
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