Tuesday, 26 March 2013

Massive update!! :) xx It's been a While xxx

This blog not going to be an easy one to write, i guess that's main reason i haven't blogged since Novemeber last year.  I planned on doing one at end of december, wanted it to be a way of closing a door on the worst year of my life, but there was no closing of that door, the worst year of my life has just continued, but every time something knocks me down, i get right back up.  Today writing this is gonna be my way off loading my life, my troubles and then you'll find me curled up watching greys anatomy series 8 trying to side track myself from the world of hospitals with a good old hospital drama, lol.  It's gonna be a long blog though so u might wanna get urself a cuppa and some biscuits and maybe a tissue as my life really don't get much easier. 

I got thru Christmas ok, it was a really different Christmas  been back home for a start but then my grandma Ethel had had a stroke and was in a home, so wasn't going to be staying at my parents, my others grandparents alternate one year with us in stoke and the other year in Cambridge with my cousins so it was there year down there, it was actually going to be the first Christmas ever it had only been the four of us, me, mum, dad and my brother, five actually can't forget my little Soph! We went and visited my grandma and my auntie and uncle so they day was up and down, wasn't really a Christmas day in front of tv watching i'd planned but i was with my family and that was what mattered.  I worked through the next few days, the weekend before new year was all planned, few nights out with my friends.

It was a bit of a crazy night on my behalf, was pretty ill the next day, however i probably should never of gone out, i wasn't feeling brilliant after going to my favourite steak pub for lunch with Steph and Gem, my stomach felt dodgy from before i went, so i knew it wasn't the food but i wasn't feeling great.  So originally had said i wasn't going out, but then i felt better, dodgy stomach wasn't gonna stop me, so i decided my little body could handle it! My little body had very different ideas, i spent most of saturday, sunday throwing up and having no energy whats so ever, monday night was new years eve, and i had a whole outfit planned for the murder mystery party.  There was no way i was staying at home, so i did my feed slowly all day and managed just about to get myself to the party, drink water and drive home at 12.30.  Having CF makes u pretty strong and its easy to put brave face on things, most people wouldn't of known there was anything wrong with me, the worst thing was that night the stomach cramps had started, i knew i probably shouldn't of gone to the party but having CF makes u wanna live every moment and not miss out.  N even feeling like complete shit i managed to look pretty good, the spray tan helped though!! 

So the murder mystery party was "Wild Wild West" my character was a debutant and so i had found a amazing little outfit for my posh girl going to the saloon for a poker night.  Everyone was dressed up amazingly, i managed the energy to play the game, sipping on my water whilst everyone else is getting piddled.  

 Turns out being sober mean't i was the only one to work out who the murderer actually was! It was actually the person who played my father in the game and i had to blame my daddy for the murder, but no one else realized it was him, just me!! 
My status new years eve, was pretty simple, u don't need a new year to have a fresh start to your life, don't get me wrong, i wanted 1st Jan 2013 to be the beginning of my life just magically coming back together but i knew especially been ill, it just wasn't.  In fact i woke up, first morning of 2013 to be told my grandma had a fall at 7am and my dad had gone to A&E to her.  Seems she'd forgotten that she couldn't walk or stand on her own and either gone to put on light switch or tried to go to the loo, either way she now had a broken hip and would need surgery and a metal plate inserting.  My grandma was 94, she hadn't had an easy few months following the stroke, i knew this was an operation even my 23 yr old healthy brother would struggle with never mind my grandma.  I know it's weird but i hoped she wouldn't get to that, she'd had a funny turn in A&E whilst my dad was with her but they moved her to the ward and settled her down.  That night we had a phone call from the doctors, they had done a brain scan because she had hit her head when she had the fall and she had two bleeds on the brain.  They said to my dad she was stable but that we needed to prepare ourselves, she didn't look like she was going to come back from this.  Me i didn't panic, hardest thing was knowing i was still poorly with my sickness that i couldn't go and see her, but mum and dad said she barely knew that you were there, she had stopped responding and now it was just a waiting game.  She hung on for a few days, but on the friday 4th jan she passed away, in her sleep.  Thing that gave me most comfort was she died on her wedding anniversary and she was finally reunited with my grandad, 24 years after he had died.  Organising the funeral had to be put on hold, because my grandma had a fall they had to do a post mortem and now there is to be an inquest, there was a fair few events that had happened at the care home and whilst my grandma was in Stafford hospital which shouldn't of happened and that led up to the reason why she had the fall.  We are still waiting to hear about the inquest.  

A week after my grandma died, i was still so poorly from the virus, i started to realise i had all the symptoms of noro virus and was totally and utterly exhausted.  I never not go to work,i hate ringing in sick, but i'd had to ring to, my body just didn't want to function and now with been emotionally drained too, i knew at trip to manchester was needed to get home ivs, there was no way i was staying in hospital, i needed to be at home to with my family.  They will brilliant with me at Manchester, my brother had had to drive me, which if u know me proves how ill i had become, i drive myself everywhere!

My grandma and i didn't always see eye to eye, for the one and only reason we were actually pretty similar.  I get my love for shopping and organising from her, to do lists, planning, budgeting.  So it was no surprise that i wanted to be able to plan her funeral, but she'd already done it all for me! 1996 she written a will out, with all the plans for her funeral inside.  To be fair mine is all planned to in my head its just not written down yet, not quite been able to get my head round that bit, i will one day, i've promised my mum, i'll never leave her in a position where she doesn't know what i want.

The Iv's started to kick in pretty fast, thank god, i remember the day after i started my ivs, the Friday, we went to the funeral home to meet the director and to plan everything, my dad took us out for tea, i was sat in the pub with tears trickling down my face because i knew i needed to eat, but i barely had the energy to lift my fork, i've never felt so exhausted in my life, i'd lost 3kg in weight and i'd dropped to 35.4kg which was about 5 and half stone.  Grandma's funeral wasn't till the 25th Jan, it was a long wait to be able to say goodbye, but i think we gave her a good send off that she would of been proud of.  

By 29th it was back to thinking about me, i've been having investigations into my reflux for last few months, if you've been reading my blog for the last year you'll know that when i moved my care to Manchester one of there first observations was that my sputum wasn't the usual colours, infact in looked like feed.  350/400 patients here and i instantly became the girl with funny coloured sputum.  One of my main reasons for moving was because last two years at Stoke i'd had 15 iv courses in space of 2 years, i'd have iv's feel better then after a week and half the ivs would wear off and i'd start to feel like i was drowning in sputum again, but i never felt like i was physically ill enough to warrant all the iv courses i'd had it just seem to be the only answer stoke had.  They decided to stop my feed for a while and it was the first time i went 10 weeks without iv's and i only actually had them because it was pre my sky dive but my lung function was doing amazing too and i was able to keep it up,  Then i started to loose weight, so i had to put the feeds back in, i ended up having ivs in august, september and again in october, so they decided to do more tests.  

I had a pH study done, this involved passing an N.G tube up my nose, which i passed myself, but i had to keep tube down for 24hrs and keep a diary of everything i ate, when i sat, stood or lied down.  

The pH study measured the acidic level of fluid that was coming up into my eosphagus, if you remember the pH table from school, 0 was most acidic, 7 neutral and 14 alkaline, my levels at some points were around 1.3, pretty acidic, its no wonder if fluid ever leaks round my peg it was burning my skin.  I've always been on omprezole this helps to normalize the acidic levels in stomach, so this prevented my oesophogus been too damaged by the actually reflux but didn't prevent the reflux.  An actual period of reflux is if the levels were below 4 for 5 minutes of longer, i had around 100 episodes in the 24 hours, and for my feed the period lasted for 74 minutes.  So overall the tests showed that i did have reflux and it was at at level that may need more attention.  So i was then referred to a surgeon, to see if an operation would help.  He wanted to put a camera down and for me to have gastric emptying tests. 

The gastric emptying test was simple, i had to fast and then go to x-ray, eat some radio active porridge and then lie in a scanner for an hour whilst they watched it move through my stomach and intestines. This test was done to make sure when i ate my stomach was emptying at a normal rate.  Luckily this test was normal.  So next it was the camera down, something if you've ever had done is not pleasant.  Mr surgeon Mr Galloway was doing it, was nice to know he was doing the procedure himself rather than relying on others to report.  They only gave me a wif of sedation, i coughed all the way through, well most people do, but i stayed calm, been the photo queen, i kept hearing him saying, freeze frame and take photo, this was very intriguing to me, i was quite gutted the tv screen was on opposite side to wear i was facing, i kind would of liked to look.  One of first things i did when i got back to the ward was ask to see the photos, it was very strange seeing my peg from the inside.

Mr Galloway came to see me the next morning on the ward, he'd been in the CF Ward meeting and spoke to the team and they had decided if i wanted the operation then it would be beneficial.  Having the camera down had showed that my sphincter (which is the flap that opens to let food in to your stomach) is very weak, therefore the operation would be to strengthen the sphincter, by wrapping part of the top of the stomach round the eosphagus and stitching it in place so that acid can't come go up the eosphagus very easily.  After the operation it will take time for the inflammation to go down and for everything to heal, so i will have to go on a liquid diet for maybe a week then can increase foods to soft foods little by little over the next 4-6 weeks.

For me, feed going in my lungs there was no question, i have to do everything to protect my lungs now for as long as i can.  They said it was an operation that if i was ever to go down transplant line i would definitely need to have one day.  So i decided to go for it, so my mission was to try put as much weight as possible on! He said he was going to have to remove my peg for the operation, so i'd then be without one till things settled down.  So liquid diet, no peg, was gonna be a struggle, i just had to look to the future, in long run it be worth it! 

So my op date came through and it was for 26th March, so i had 6 weeks to get my lungs tip top, get weight on and enjoy myself.  So that's what i did, random nights out, lots of alcohol and lots of fun, but i was sensible too!! I felt really well for those 6 weeks, went to gym, even tried circuit training and actually attended my friend's dance class 2 weeks in a row! 

 Just one thing went really wrong, i'd planned the night out with some friends for my last weekend before my operation.  The biggest party animal Mr Ian Wright was supposed to be coming out with me to celebrate, but sadly something happened, still don't know what but he died saturday morning, his parents found him and we are waiting for the PM results to find out what happened, but he left a huge whole in so many peoples lives, his family and his precious liittle 4yr old boy, he's gonna miss his daddy like crazy.  A week later i'm still struggling to understand, but i tell u one thing, i never thought i'd miss him like i do.  He's been like a big brother to me since i was like 15, popping in and out my life like a yoyo, but normally on a night out up town! Although on my 16th birthday i took him with me to sign the consent form for my belly button piercing, we both had blonde hair n glasses back in them days, we thought we'd pull of been bro and sis easily, they didn't believe us, lucky when they rang my dad he played along with fact he had another son and ian was able to sign the consent.  Lately he's been an amazing friend to me and now i feel lost without him, helped me through some really tough times, n been part of some pretty amazing nights out. I mean who else on a night out can get away with tying a belt round ya neck and making u pose for a photo!!! haha!!! 

Ian was such a wicked guy, dazzling personality, full of wit and bags of charm, always straight to the point, but a guy with a gold heart, would do anything for you and was always at the other end of the phone ready to help u out of the daft dilemma u found urself in! He kept saying he was gonna come take me for lunch whilst i was in hospital this time, i said if you come after my operation then u can only take me liquid lunch, he kept saying he'd take me the pub then for a guiness "liquid n lots of calories" that was his reason!!! Me i don't like guiness would probably rather drink a fortisip!! xx

So now i'm sat in hospital and my operation is in 8 hours time, i'm not still awake because i'm nervous, its just a case of in this place u sit around all day and don't do anything so u just don't really feel tired.  I've just had my final meal, tea, toast n rice krispies, as of tomorrow its feeds n liquids only till i can progress onto a soft food diet. As long as i can sip tea i'll be fine! 

I've been on iv's for last few weeks, n my lungs, well my lungs are in best condition they been for about 10 years, today my lung function was 49% FEV1 1.3litres FVC 69% 2.15 litres, numbers i never really believed i could hit ever again! I was so excited that i cried.  I've been feeling pretty well with my lungs since my last lot of ivs in Jan, but its been a vicious circle with my feed, making my lungs feel terrible and me not been able to tolerate the feed well, once i get on iv's and my lungs dry up, i can tolerate my feed alot better and my lungs feel loads better. but hopefully after the op once things heal, i'll be able tolerate my feed without it making my lungs feel like shit and maintain a nice healthy weight! The surgeon is going to try do it now without removing my peg and if he has to he is going to put me a new one in, so fingers crossed that means i'm not gonna loose too much weight!! 

Gonna finish this blog now and i'll update u all post op in a few days!! xxx

Thanks for reading xxx