Friday, 29 July 2011

Oh what a Week! Bronchoscopy, Chest Pain, IV's and One Eye!


Well i promised i'd update you all after my Bronchoscopy, which was a week last Wednesday the 20th July.  It didn't quite go according to plan! I had asked for my own consultant to do it for me! Seemed daft for me to have a bronc done by another doctor when he did them too! I was a little annoyed at first, i went up early so my CF Nurse could needle my port so i wouldn't need a canula!  After having it needled so they could give the sedation through it, my consultant said he didn't want to use my port he wanted a canula! So i showed him my best vein, i didn't really want the poor little nurse to have a go, i have rubbish veins, n would need a kids canula not an adult one on my tiny little veins! Luckily for the nurse my consultant said he would do it! Ha ha! He missed, thought he was in but he wasn't! I wanted to laugh and say see i told you i had rubbish veins, but least now he knows himself and won't try again on me!!

So they were using my port, n wheeled me into the room, i had been quite calm till then, but then when they walk round with camera they about shove down ya throat its bound to make anyone a little agitated.  My CF nurse and physio were in the room with me, i had told physio i wanted her to take notes so after she describe my lungs to me!

First they put some horrible throat local aesthetic spray to back of my throat, from that moment on i started coughing, i'd had trouble with this is gastro before, coughing a lot, but then the sedation kicked in and i swallowed tube n don't remember anything else! So i was hoping for the same! He then put some horrible stuff up my nose to clear it out for the camera! i was quite happy he was going through my nose, i used to pass NG tube so even though this one a little bigger i wasn't phased! I coughed some more with nose stuff, then came the camera, he hardly gave me any sedation to be honest, so as soon as he camera hit back of my throat i coughed n coughed n choked a little! They got into my upper airways i think but i couldn't stop coughing n sputum was coming up thick n fast! So they decided to stop, i think i had a little nap! The physio then wanted to give me some physio and i kinda remember that! Sedation always makes me a little loopy, that bit after i do remember!

Afterwards all i wanted was to see Steve and go home, curl up in bed and watch Lost! I was allowed to eat and Steve got me a McDonald's on way home, so i was quite happy to get home.  I didn't do much for rest of day, felt weird and not quite myself but that's just sedation! I didn't really feel myself till next day to be honest! Think i was more traumatised, i remember what i went through at the time was horrible but luckily with sedation you don't remember it!

I'm not sure if they will try again, i'm going to see physio next week to try get lots of different samples sent off to see if we can see what's going on that way! I'm disappointed it didn't work though as i really wanted them to see what's going on my right lung, where i have a bad patch n all my bleeds from, also wanted samples from deep down to see if i had candida hibernating as i seem to be riddled with it everywhere else! Also they were going to put some DNase directly in the lung and thin my thick horrible mucus out!


Following the Bronc, last friday at 5am i woke with Stabbing pains in my back upper left side, not normally a problem area for me really.  I cope quite well with pain normally, but this made me cry! So at 9 i rang work and rang in sick (which i haven't done for over about a yr so yes it was really bad) then rang the hospital and arranged to be seen at 12.  I had to get my grandparents drive me up, cuz i just couldn't drive! It's not like me to not want drive.  I felt bad asking them because my grandad's twin is in hospital quite poorly at the moment so they have enough going on, but they knew i wouldn't of rang unless i needed them.
I saw my consultant and he said it was prob infection and to bring my IV's forward a week, they were planned for 28th so i could have 2 weeks before my holiday.  So i had my port needled and sorted out my home IV's, regular paracetamol has helped me though, the pain was loads better by saturday night. Saturday was quite a frustrating day!


Sat night i was supposed to be going to Yasmin from work's 18th, it was just a party at her house so i decided to drive round for a few hours, i gave Sammie a lift! This is when it get a little silly, pulled up at the house and my coat was in my boot, underneath Steve's case full of kitchen door samples! i still had my car key in my hand and yanked at the coat a few times, when it came free though, my arm i had no control of and the key in my hand stabbed me in the eye! Sammie i would like to add at this point was laughing her little head off! I moved my hand away from my eye and asked her if it was bleeding, she said no! My eye was throbbing, my contact lens was in pieces in my hand and i could tell there was part of it still in my eye! I We went in the party and i decided i'd just wait till my eye stopped hurting so much to before going to try get bit of lens out! The girls said my eye was a bit blood shot in corner but it didn't look serious! So i just sat with the pain, the girls were a good distraction! When i got home, my eye was still throbbing, i would actually say it hurts more then than when i did it! I tried waking Steve to have a look at it, he managed to laugh his head off still half asleep at what i had done but then continued to snore!

So with my eye still hurting n a piece of lens still in, i decided to go sleep and in morning see what it was like, it still bad, i'd go Tesco and see optician! Sunday morning i woke up and my eye was glued together! Steve was in Wales on a bike ride, so i rang my parents, this was at bout 9.20, but they were nearly in Chester! I waited till 10 and rang Tesco, "Sorry, no optician works on Sunday, we advise you to go to A&E or Walk in Centre! So i rang the out of hours doctor number! They said that even if i saw a doctor that they would need send me to A&E anyway because they don't have lamps to look properly in my eye!

So off to A&E, I went! Waited 2 hours to see a consultant for bout 10 mins, who took the lens out, poured orange dye all down my face, instead of just a little drop in my eye, who gave me some chloraphenicol ointment to use twice a day for couple of days and told me my contact lens had prob saved me eye cuz there were no cuts/scratches! The orange dye all down my face though made it look like in them 10 mins i'd go into a big fight! Had go toilet, clean my face up before I could leave! Only good thing bout been in A&E was the Grand Prix been on TV and Lewis winning, it was quite hard not shouting at the TV though

Get the ointment in my eye was quite difficult, it's like vascoline, i used it for 2 days, but Thursday my eye was still hurting just as much and i woke up with it glued together! I was going to Newcastle so i nipped in Boots opticians, who told me they prob would have to send me to A&E again if they saw me, n couldn't see me till Friday, so I decided go back to A&E, i wasn't going to pay to be seen 24hrs later when A&E is free!

I was in and out of A&E in 35 mins, amazing, if you need A&E seems Thurs afternoon about 3.45 is the time to go! I saw a nurse and she was brilliant, put a little drop of orange dye in my eye instead of pouring it down my face and she taught me how to use the ointment better! N apparently i did damage my eye, i have a cut in lower eye lid about 6/7mm long! She sent me to the eye clinic today to get a specialist to look, they say it gonna take a few weeks to heal but luckily i don't need a stitch! That idea freaked me out a bit, but least now i feel better that my eye will be ok and seen specialist so I'm a lot happier and i understand the why I'm still in pain!

It's horrible not wearing my contacts though, not sure I'll get used to it, first few days i felt sick n dizzy wearing my glasses but think it's cuz so used to have full vision wherever i look! It's strange getting used to glasses again! but I'm slowly used to wearing them now, but i just don't like wearing them at all!


Hmmm prob not would be answer, my lung function on Thursday was 32, i didn't do it when i started IVs because of pain, i have a lot of crap to clear n really need to use my Neb's, life this week I'm not sure whether I've stopped much, between all the hospital appointments and work and campaigning, meetings and organising decorations for my friends hen party for Saturday it's kinda been a little mental!

Next Tue, I'm back at the hospital to try get the samples and my physio found out that there is an attachment you can get that allows you to use nebulizer with acapella together! For me this would be excellent, i don't use my acapella like i should because of time, so i only use it if i feel there still stuff to clear after my Neb's cuz to be fair the hypertonic saline works pretty good with me getting rid of the crap! So using the two together will hopefully work well for me! I'm hopeful anyway! So Tue should be interesting!


Well i hope my bad luck is over, when i was in Morrison's today buying a sandwich, i suddenly felt lucky, i was about to put my card in, then i asked her for a scratchcard, don't normally buy them. She went to scan it and the till froze, 10 mins later i still hadn't paid, so had to go to another till, i still haven't scratched it off because i didn't feel lucky after jamming the till!! So i'm saving it for a more lucky moment!! I should be due some luck after the week or two i've had! I've had enough now, i would just like my IV's to make me well so i can buggar off to Turkey for 10 days with Steve, Sarah and Joe, have a good holiday and forget about my life with CF for a little while!!

This weekend if Gem's Hen Do so saturday should be good and sunday i'm working, i need overtime shift to make up for the day i rang in sick! So i guess i should go to bed now!!

Friday, 22 July 2011

My Birthday, Black Eyed Peas and Mum's Party!! N the crappy CF stuff!!

So other than being very busy bee, i've been up to a few exciting things!!


After my Skydive i had all my friends round for a Birthday BBQ/Party!!  In true style as i'm now well into my fundraising, i charged entry of £2.50 to everyone!! Which wasn't a bad deal as me and Steve provided all the food for party!!

 Had a great night and thank you to all for coming along!!


This is Me being Honest with myself!

So by this point, I had actually just finished my IV's after having them for 19 days! This lots of IV's were very frustrating for me to say the least, i was very busy and tried my best to rest, i had booked them in for then because i knew i was going to be busy with everything, but because of how poorly I got just before I started it took a lot longer to recover this time!! Many of you will shout at me and say i shouldn't of gone to work and i should of done this or that, maybe i should but sometimes i actually struggle more when i don't get up and do things, them days of sitting around doing nothing, trying to rest, i do nothing and when it comes to getting up to make lunch or go upstairs for the loo, i cough and i'm exhausted! Where yes, i struggle to get up in the morning and get myself ready for work when i'm poorly but when i actually get to work, other than feeling a little tired, i'm actually ok and surely walking around for 4 hours a day getting exercise is slightly better for me than sitting watching day time to TV and on Facebook!

So part of my problems over last two years is every time I have IV's a loose good bacteria! It's not a nice subject to talk about really but i have lot of problems with Thrush and I seem to be riddled with it! I have had swabs and have it in mouth, peg site n down below to put it politely!

I know so many of you girls know what it's like, but i can't describe how bad it's got for me, my repeat prescription with the GP almost has as many drugs on it to treat Thrush as it does my CF.  The problem is they just don't do anything to get rid of it, no sooner av I finished IV's, i'll be on orals and then back on IV's my symptoms never have chance to get better! 

So this time having become so poorly, it really was because i pushed myself too far, i knew i had a lot on, knew i was going to be starting IV's on 13th June but tap started too fill my lungs up and i started to really struggle in the few weeks before that and i didn't put myself on orals and i didn't bring my IV's forward like normally I would! But i was so sick and tired of feeling so ill with the systems of the thrush i just kept saying to myself "i'll see how I feel tomorrow!" My lung function hit an all time of FEV1 27% which quite honestly scared me! I felt so tired, exhausted and ill and couldn't cope with the amount of crap coming out of my lungs, if i'm honest if i'd of seen anyone else like i was i would of told them to get their ass in hospital, but i was stubborn! There are alot of issues going on with our ward and hospital, that's so my next blog, that i really didn't want to go in hospital. So off home i came with my home IV's! Still carrying on with everything else too!

That day though I did ring my GP and ask him to refer me to someone who could help me for my thrush, because i was at the end of my tether!! 

The refferal came through really quick and I went to see Dr Bodasing, a consultant in Infectious Diseases, who sent me for swabs first, she needed to know if i was resisitant to all the drugs i've been using! This was something I have had problems with my chest consultant, one treating n two believe it was such a problem! One he male n two he specials in lungs, not sure what i expected! He always said i would have to have immune system problems to have thrush everywhere for it to be so bad and for the drugs not to be helping! Well turns out I was resistant to everything I had been prescribed! For years now everytime i have IV's i'd be put on Fluconazole too, i've used Pesarys, Creams the lot and oral Nystatin for my mouth! 

So now i have the most lovely lady consultant helping me!! She grabbed my arm the other day and said "Please don't worry, there aren't many people like you, but i will do my best to help you, we have lots of things we can try!" So now i'm using a special drug, that had to be made up for me in pharmacy, because it's not mass made because it's barely used.  It's a cream combining two drugs Flucytosine and Nystatin! It's not very nice what's i'm having to do with it every night, but fingers crossed it'll help, it's just for two weeks initially! 

She's now working on finding me a drug for my mouth, Nystatin helps still just treat the symptoms but doesn't get rid of it! Waking up in the middle of the night gasping for a drink because my mouth is so dry and the back of my throat, it's horrible and the constant taste in my mouth, i'm sure i don't know what half my food tastes like anymore, it's probably why i need sugar in my tea now! 

But saying that sugary drinks, alcohol etc only make my mouth worse, so i try to stay away, i have my half a bottle of coke at work each day to give me little energy boast if i feel tired then it's tea and water! i'd give anything to have a nice pink tongue instead of one with a horrible white/browny stain on it!! Brushing my teeth u'd think it helps, but sometimes it just circulates the thrush round my mouth making things worse!! I'm in a catch 22 with everything I do! So I hope i can stay off anitibiotics for next few weeks, my IV's are booked in for 28th July now so i can have 2 weeks before my holiday though! 

Fingers crossed this treatment helps, It's also made my chest consultant listen now, he's now doing a Bronchoscopy on Monday for my sins, i'm so not good with swallowing the camera, i've told them give me lots of sedation! So fingers crossed i'll be ok! But this is to see if they can get sample from deep down to see if i have Thrush "Candida" in my lungs, as it can hibernate there too n i've had a lot of IV's over last year or so and not really felt the benefits for very long! Although i also have Aspergillus so they gonna look into that bit more too! I've been treated before with Intraconzole and it helped but last time it affected my Liver so they not wanted give it me since!! Boo Hoo!! I just want to try though! 

Enuff with that now anyway! I'll update u after my Bronch on Wed with more!!


Next I went Alton Towers to see Black Eyed Peas (6th July) this was my birthday present from Steve!!  Mart was there too with his I was a brill concert, it had rained all day so when we got there it was still raining a little but then it stopped! Most the people were wearing the sad little poncho's! I'm sure Alton towers weren't complaining, bet they made a packet!


So next on the agenda of my busy life was my mum and dad's garden party (10th July)! Mum and Grandma had spent the last few days baking and my dad was painting and tidying and clearing out the house ready!! It was a charity garden party for Breath of Life!! It turned out to be a lovely sunny afternoon and the family and friends who came were really generous! Selling cakes, raffle and mini tombola and they raised £325 for the day!! Which was brilliant!! 

Ella was my little star, selling raffle tickets and the tombola! On behalf on my mum n dad thank you to everyone who came and helped it be a success!!

I have so much more to write about but i think it's time to end this blog!! 

Sunday, 17 July 2011

The Skydive!!! :) For Breath of Life's CF Project

I'm two weeks late updating you on the one thing i've probably mentioned in every blog for the last 6 months!! So much has happened, my life has been pretty crazy!! Update my blog has been on every to do list i've written but i've just not got round to it! So this week i plan to update you the whole of my life and there may be a few entries tonight!! 

To start the Skydive!! 

What an amazing day that was!! When i woke up at 5.45am the sun was already shining and i knew it was going to a beautiful day for the 17 mad volunteers to jump out of a plane!! 

They had all message me the night before with there sponsorship totals and we were looking at about £4,200 at the start of the day!! My target was around £3000, if the minimum £400 Sponsorship was raisied by each one and they all took the £230 away for Skydive costs, that would mean a minimum of £170 going to Breath of Life's CF Project!! This would of made £2890! I still have 3 Skydivers jumping on a different date so I knew £3000 was easily achievable!!

I was blown away the next day when I realised including all the gift aid from justgiving sites we were on around £5000 and the total has been getting higher n higher, with people still sponsoring!! To date the total stands at £5988.11 and i'm so excited!! 

On the Saturday my local paper ran a small little article about me setting it up the event:  
Click the link to read the article!! I was a page 3 girl for once!! lol xxx

I was hoping for a follow up and I wanted this article to be about my Skydivers but unfortunately for them, even though i sent photos and quotes the follow up got changed a little as the Sentinel nominated me for a "Charity Champion" Award with the The Sentinel Our Heros Awards.  The following article is the small follow up to how much we have raised and about my nomination!!

I am so honored to receive the Nomination and hope that I can do more in the Fundraising line before September when they decide who goes forward to the award ceremony!! 

So i want to take this opportunity to Thank each n everyone of my Amazing Skydivers and tell you a little bit about them too!! 

So first up was Ash, Mel and Rach!! Overall these 3 raised just over £1000 after paying part towards their skydives. Thanks you xx
Ash, Mel and Rach after their Skydive!!

Rachel Hughes:  I have know since I was about 4yrs old, we went Primary School, dancing, swimming together till we were bout 17! I hadn't seen Rach for about 10 years so when she wanted to get involved in Skydive in got us back in touch!!! 

Melissa Roberts: I met Mel 18 months ago when I started working at Monsoon, Mel also works at Swynerton Arms Pub and had plenty of punters sponsoring her because they didn't believe she'd actually do it!

Ashley Doyle: I only actually met Ash for first time at Skydive, he friends with Rach, but when he contacted me it seemed it was a small world as he knew my brother too and also one of my other friends with CF Aaron so he was really excited to be getting involved!! Ash gave me this quote for the paper and i'm so sorry it didn't go in for your nan to read, but maybe you can show her my blog instead!!   

"It was one of the best things i've ever done, it was such an adrenaline rush free falling and all whilst raising money for a great charity"
The Second lot up were Mike and Jodie.

Mike Haines: I met Mike when we did the Pub Crawl in April, he and Dan tagged along with us girls and helped us raise lots of money.  Mike just so happens to be getting married to one of my other friends from when i was 4yrs old, Liz Coventry and they get married in September, i hope they have an amazing day. 

Jodie Dean:
I have know Jodie since she was about 6, Jodie has CF and was well up for the challenge of jumping out of plane!! Jodie works at the Weathervane Pub at the moment, she is just turned 20 and was very brave doing the Skydive although not sure she'd do it again she loved the experience!

Jodie and Mike raised about £900 between them for the Skydive!! Thank you to you both!! 

The next three to take the Plunge were 3 of the 4 Physios,Helen Mc Greary, Sonya Meigh and Greg Bicker! All the Physios paid for the Skydive themselves and the 3 raised £715 for the Charity!! Thank you so much!!

Then was Lynn, Lynn paid for own Skydive too and raised £210 for Breath of Life! 

Lynn Fitzpatrick: I met Lynn in Year 9 at School when she joined about group of friends after moving school, after high school we kinda lost touch and she's been teaching English abroad for last few years but now she back teaching in the UK, Skydive was high on her to do list so was great to get back in touch and get her involved!!

The next three i hadn't met till the day of the skydive either!! Danni, Kev and Matt! The 3 of them together raised just over £500 so thank you so much for getting involved.  

Dannii Ball: Danni contacted me as she is friends with Rachel Hughes, she is only 17 and goes to Blythe Bridge High which was the High School I went too! Matthew Houston and Kevin Bebbington are friends of Danni.

Then it was finally the turn of my husband and best friend. Steve and Stephanie.

Steve Hughes: Steve is my husband and was my first candidate i roped into doing the Skydive! Steve works for Dream Doors Kitchens, he was quite happy to jump out of plane for me and the project as long as i did all fundraising for him!! Steve got to take over the controls and did lots of tricks in the air, which was great to watch! Hopefully he will be doing it again next years and getting the rest of the boys from Dream Doors involved too!!

Stephanie Shaw-Myatt: Steph my lovely best friend, Steph has just come back from a month travelling in Bali and is a midwife.  She loved every minute of the skydive, didn't want to do any tricks, she just wanted to sit back and enjoy the view! 

Steph paid for own Skydive and between the two of them have raised over £1000! 

The next two up were Giles and Rosie.

Giles Lund: Giles's was the first to reply to my facebook message saying he was up for this challenge, then i think it sunk in, but threw himself into getting sponsorship putting forms everywhere.  Giles is married to Stacey who has CF, his work links him with Bet 365 and Stoke City and was able to raise an amazing £1000. Well done and thank you Giles.  Giles had his Skydive Videoed, hense the fab photo!!

Rosie Cornie: Rosie is currently our CF Physio at the hospital! She was so excited to be doing the skydive and having watched around 70 people jump that day, flying over us waving on quite silent, Rosie squealed all the way down, happy exciting squeals though, she loved every minute of it!! Rosie paid for her own Skydive and raised £265 for the project.  

Thank you Rosie for getting involved and getting the other physio's involved too.  

This photo was one of my favourite of the day of the 4 physios!!

Last but not least was Nicola!

Nicola Kane: Nic has CF too and was well up for the Challenge of the Skydive.  I hadn't seen Nic for a while so it got us back in touch, Nic and her family came very well prepared for the day with Camping chairs and a picnic!! Nic raised £350!! 

So as you can see it was amazing day!! Thank you to everyone who sponsored the skydivers, everyone who came and watched and thank you to my mum and dad for coming along to take lots of photos for me!! Here are a few of the best ones!! xx

My Group Photo was unfortunately taken without 4 of the crew because there always seemed to be a group in the plane!! 

 You can still sponsor any of the Skydivers by going to the Team page and clicking on one of the Skydivers page!!

Or you can Text your donation to 70070

Simply text BOLCF followed by your amount or either £1,£2,£3,£4,£5 or £10 

For example: BOLCF £5

Thank you for your Support!!!

Oh n if your interested i'll be organising Skydive 2!! N I will be Skydiving myself next time!!

So email me if your interested!! It will be next year, April time i'm thinking!! 
But will be starting to arrange it soon!!!