Tuesday, 24 April 2012

Lifes a....

wellll hello!!

basically i feel shite at the moment! i want to be writing nice things about how im feeling but sickness is pissing me right off, my appetite would be none excistant unless i hadnt been pushing myself and also with my mum going on at me too!! my chest is rubbish, im feeling so weak, no energy, feeling tired all the time, im getting full nights sleep and still walking around in the day time like a zombie!!

the past week iv not managed to do much about all iv done was get my gorgeous sofas ordered from DFS!! there lush though and cannot wait for them to arrive on the 16th to the new place! apart from that iv tried to rest as much as i could, it was one of my besties baby showers this saturday so made sure i was well and truely rested a few days before! i woke up on the day feeling rubbish and just went into panic mode, there was no way i could miss this, we been planning and organising this for the past few months!!
i drugged myself up on morphine calmly got ready that morning and just gave my body everything it needed and by lunch time i felt much better and managed the afternoon quite well!! didnt need to be sat on the oxygen! (well weather i needed to or not i didnt haha) got involed in the games and chit chat and it was such a lovely day all went well!! heres a few piccys..



the belly cast we made of hannahs bump at 31-32 weeks


mummy and daddy to be hannah and mike


the baby shower crew! me siobhan and amy!!


couldnt leave out a pic of these gorgeous cupcakes made by Nanny Sarah!!


and my gorgeous flowers from hannah for helping with baby shower :)

so that was saturday.

then sunday my lovely cousin came down to spend the day and night with me...went for a nice posh lunch in cobham, then i decided to torcher myself by going to look at yorkshire terrier puppies!! we got to the place and they had the EXACT pup i wanted a little teacup size yorkie!! i feel in love! was a little boy! so cute when i was cuddling him, so tiny and was licking my hands loads...think he could taste my saltyness! haha then it found my oxygen tube and started nibbling on that haha woman had to move it behind my shoulder so he couldnt get to it! i didnt wanna put him down!! if id had the money there and then 100% i would have brought him home with me, he was ready to go!

this weeks been a no go so far! i have managed to get out for a few hours each day but its completely wiped me, hate feeling like this bugs the hell out of me...what kind of quality of life is this!!??everything is such a struggle at the moment...even the simpliest of things just aggs the life out of me!! just want to be able to jump out of bed in the morning get ready and go out and not worry about if il be well enough or can i cope with it, or will it wipe me out, just wanna be flipping normal!! i wanna moan about normal things! (mini violin playing)

anyways enough about me being a complete pathetic sob story haha everything will be cushtie soon, good little saying i saw someone had put the other day! something like "Everything will be okay in the end, if its not okay, its not the end .." - defo the outlook i like!!

i spoke to my cf nurse specialist today and she knows exactly how im feeling and everything so gonna try and fit me into clinic next week to see the drs! deep down i no what i need...my body needs ivs again, but my head doesnt feel ready, only left on the 12th april and its now the 24th!! agg!!

anyways im not gna push my body as its not gna do myself any favours in the long run! and cant afford to have big knocks need to be well for whenever i get the magically life changing call!!

if your reading this and still havent signed up for organ donation please do if its something you agree with. you dont need your organs when your gone! knowing you can save up to 9 lifes is such an achievement in itself!! click on the click on the side and sign up please!! you can choose exactly what organs you want to donate! iv signed up and so should you! if your willing to take an organ, then be willing to leave yours! :)

gna leave this blog on another good note!! i think i might need to change this blog to the Mickey Parks blog about- yep thats right hes done yet ANOTHER run but this time its not a half marathon!! oh no hes only bloody gone and done the LONDON MARATHON!!!!  what a legend and yes all for Cystic Fibrosis!!

he done the run in about 5 hours!! and was in so much pain yday when i spoke to him and you no what he said to me... "but what i did is not a thing on what people with CF have to do"

hes such a great guy!! so hes done 3 half marathons and the london marathonall for CF!! so come on guys cough up some dough and donate to his online sponsor page heres the link below!!


heres some latest piccys!!



also if you think hes a great guy hes also single!! ;) hahaha please contact for any date enquires hahahahaha (dont kill me mickey)

haha

thats all iv got to update on for now then

love love xx


2,984 hours on transplant list (4 months, 2 days) xx





Tuesday, 17 April 2012

Sickness is well and truly back!!

ERGH I have felt so weak and rubbish today! It soooo was not a day to be feeling like this had so much to do!

Had really restless night last night, when I finally got to sleep last night lee decided to "pretend" he had cf hahaha I'm kidding I felt sorry for him his chest actually sounded worst than mine and I'm waiting for new lungs! He was coughing and wheezing away and did his sats and they were like 95%!! He's ment to be the "well" one can't have him getting I'll on me, I think he's got allergies to something cause he was wheezing away!

Anyway besides that oh my god I feel
Sorry for everyone around me! It was SO annoying having someone coughing constantly haha ud think I'd be sympathetic and I wanted to be but god how do people put up with that! Lol and would he take any of my drugs to help him-NOPE!! Lol
You'd think anyone would jump on the idea of a bit of morphine ha not lee he's sensible and said what happens if he reacted to it! Which was true but I just wanted him to stop bloody coughing hahaha I'm such a bitch ;)

So took me a while to sleep then had to get up at 9.30!! Oh my god so early!! (for me) ;)

And had so many things to sort out with my new place and rent etc, its so funny walking into council, the woman judged me straight away, was really shitty and as soon as i spent a good half hour with her going through stuff and i took a funny turn and had to get mum to sort it out as i couldnt talk, she found out i was on transplant list and i had got out of hospital last week her whole attitude and body language changed towards me, she became lovely!!..makes me giggle!!...had to get things all signed up with paperwork for new place, then later had to wait for gas man to come as lee thought he smelt gas the other day-I never noticed every time Iv been there

Well turns out there was a gas leak and had 4 work men turn up, 3 massive work vans and they had to dig up the front to change the pipes now and rip out some units in my kitchen such dramas lol

AND throughout all this I felt so sick and struggled to eat and cause Iv not eaten felt weak it's so horrible when I get like that the only thing to help is to get some food down me but it's the last thing you want! I got some chips from fish n chip shops with lots of salt thought be settling on my stomach and hopefully give me a boost!! I didn't manage to eat a lot but it worked and felt a lot brighter in the afternoon!

Didn't get a chance to go to dfs to buy my sofas though :-( 2moz hopefully!!

So whilst these men were hacking away at my place I decided to take a little trip into town and visit my beautiful mate Tor who works in a lovely shop full of bits I could easiily cover my new place in!! Got a nice new candle!! Mm smells gorgeous!

The worked men called so couldn't stay long and headed back and had to arrange for them to come back 2moz!

I slept the whole way back to Chertsey the day had completely wiped me and get wanted rest and more food!

Chest feels ok goes funny at times but wouldn't be waiting for new lungs if my chest was perfect ;) lol

So gonna get some dinner early night and fingers crossed a more productive day 2moz instead of my mum running around after me bless her!! She really is a star!! Love her too bits!!

All for now love love

2,814 hours on transplant list!

Xx

Whats been happening!?

Bonjourno!!

I can't sleep and got lee fast asleep next to me snoring away so thought I'd make use of this wasted time to right a little blog instead of letting my stupid head get carried away too much in thought about life, one of the two places I think most about life in general are late nights and hour long baths!! Lol I pretty much plan out my life in these two places!!

Chest seems to be holding up ok, been quite busy and independent at times since Iv left hospital!!

Friday lee and I sorted out all the crap in my flat to get ready to move! And put bits on eBay to sell stuff I don't want to take with me to new place like sofas, bed, tables etc so fingers crossed they sell!!

Saturday we spent day in home places, went to dfs found a gorgeous corner sofa bed thing I'm prob gonna get called LUSH!! And it really was lush to sit on! I felt lost on sofa it's so big!
And went to carpet shops and wickes to get loads of ideas and bits we needed to buy!

In evening went for a lovely over priced meal in bluebeckers in shepperton with daisy and Lauren was good to get out, tried to be all grown up and have a glass of rosè to myself it was only small, couldn't handle it, haven't drunk since new year n that wasnt much, body can't handle it, started getting bit funny after half a glass and breathing went tight so let daisy finish that!

Then Sunday went for an over due sunbed! Felt amazing!! Love tanning so much DEFO gonna miss that post tx!! :-( Then saw my bilbo!! She finally back after months off being a chalet girl in the alps!! Not seen her since before Xmas was only a quick visit but was great to see her!!

Had my oxygen with me all the time in car mainly but pushed myself a lot, I dont really notice My sats being lower now my body's adapted I don't struggle til they really dip to low 80s I no I should be on my oxygen but sometimes it's just quicker to jump out n do things quickly then run back to car n recharge my body with oxygen after- not safest option but hey Ho when do I ever do what I'm told or what's best :p lol

Another thing that keeps happening dunno if it's just me but if I stand for too long my left leg gets really painful on the shin and my leg swells up and goes puffy like old lady's do it's so painful only happens on that leg :s so weird...think I need to speak to the old drs bout that!

Off steroids now, but appetite has slowly dropped and started throwing up again and feeling sick!
Lee bless him he's so good and does above and beyond what I'd do for him if it was other way round! I got in a right state and woke up during the night and threw up everywhere, had no energy completely wiped me, he changed bed cleared up everything! I felt so crap he's amazing! So lucky to have him really!! -not gna tell him that tho ;) lol

Really hope this sickness goes there's nothing worse and things have been so good and after the other night it's put me off doing my feed which I need to snap out of as I can't afford my weight to drop!!

Mixed emotions tonight though!

Firstly I'm OVERLY excited about my new place! It's already looking wicked, lee and his dad have spent over 12 hours there today none stop sorting out bedroom and living room, they done so much already, looks great and really appreciate all there work there doing for me!! Love them too bits!!

Secondly seen a lot of sad news about CF people at the mo! A lot of people seem to sadly have lost there battles or things haven't worked out best! I don't personally no them but reading some of there blogs really are amazing! People say I'm brave but bloody hell these people make me look ridiculous!!

It's so sad when you hear stuff like this but this is why I strongly stick by my ways!!
Growing up Iv been very selective of who I let into my life Regarding them having cf! I no sometimes it can come accross as me being a complete bitch, but I'm protecting myself!

Realistically CF people don't have a long life its nothing new its life! any nasty infection bad enough can wipe us out and i can't be doing with letting people close into my life when potentially I no I could loose them!

Its selfish but it keeps me sane, I can't have my life surrounded by CF!!

Besides all this, one story that really has been on my mind all day and even made me cry tonight- a story that shows as AMAZING transplants are and they give you the best quality of life, sometimes its not always as long as others- a girl called Ellis, I haven't read her full blog and don't no her but from what Iv already read she's so inspiring her courage and outlook on life is amazing! And although I didn't no her, and don't let myself get emotionally attached to people I can't help but think of her tonight and her family! This is her blog
http://www.smeg91.blogspot.co.uk

Just shows how much you should appreciate life and live it to the fullest, she's one of my inspirations now!!
RIP ELLIS xxx

So if your reading and your quick to moan about how "bad" or "hard" your life might seem, take a second and just think about others yeah!?...

That's all that's on my mind tonight

Love love

2,796 hours on transplant list!

Xxxx

Thursday, 12 April 2012

Escaping prison!!

Well I didn't think through the Easter weekend! Weekends are bad enough in this place, there so boring and quiet and the staff are lazy too :p lol but having an extra two days added on top of that was literally torcher for me!! It's basically two weekends together ahhh

I'm not so hard done by I did manage to get out for the afternoon on Friday and Sunday so I am being a bit dramatic! Lol

I didn't celebrate Easter this year, 1 it's completely pointless even growing up as a little catholic girl I hated it, the only good thing when I was younger was we got two weeks off school! And as my mum hated me missing school 9/10 she would get me in hospital for a planned admission to keep me well haha evil woman ;) I don't like choc so it's just a bit pointless! Not like I can go out raving on the bank holidays anymore aswell! Lol

Another reason why this year mainly I didn't do the whole Easter thing is it was 1 year anniversary of a close friend of mine who passed away! Wasn't Easter Sunday it was Sean's day in my eyes!! Words can't really describe how much me and everyone around misses him and josh. And they say times a healer...not sure it always is, maybe if the person was suffering or was old and had lived a full life, but 24 and 21 is far too young and not right in my eyes! I truly believe everything happens for a reason, but in this circumstance I still don't get why!? Still haven't got my head around it and get so upset ESP to see the pain others are going through and knowing there's absolutely nothing in this world you can do about it!!

So today I'm finally leaving, feels like Iv been here forever when actually its only been two weeks in hospital but 4 weeks of ivs. My weight is now 40.6kg :-) they reckon about 1kg of that is fluid though. Sats are between 88-92 off oxygen feel good lung function today was 17% which obviously had gone down from 21% but I knew it would as I'm only on 5mg of steroids now and that's only for next few days then will be completely off them.

Decided to leave the NIV for now, they did blood gases yesterday morning and it came back that my carbon dioxide levels were a bit on the high side so the NIV would be helpful and they think it will prevent me having to come in for admissions as much but as I'm well it's not best time to try it so that's the plan for my next admission. Which we are going to try to plan for next 4 weeks unless I get unwell before orrrrr I get the magical call ;)

Been thinking a lot as I was leaving the ward today saying bye to people like imagine I could be saying bye for the last time and might never go back to that hospital if I get a call for lungs... You never really no what's going to happen...

Be a lot of the staff I will miss when I go to harefield in the future, you build such a bond with people, and so use to a certain way of life! Everyone nos me up at the hospital even the ambulance drivers and I never go in the ambulances!! Just get to no everyone!
Either way it will be a good change! And will build new bonds!

Had all new oxygen delivered today straight out of new boxes all shiny and new!! Nice shiny crome liquid oxygen tank!! Love a bit of Crome!! And also had a lovely smaller and much quieter oxygen compressor delivered too all good! Nice to be home but got sooooo much to do, the next few weeks are gonna be mental!!

Il attach some piccys of my new oxygen bits

All for now love love

2,690 hours on transplant list xx

Saturday, 7 April 2012

Bored in hospital...

Im bored in hospital so thought id do a little blog to keep myself amused!

well firstly im overly excited at the moment and didnt want to say why but i literally cant keep it in any longer!!! but i am now a proud owner of a beautiful little bungelow!!

this is something that wont seem important to anyone but my housing situation has really been getting me down for months at the moment to the point of literally crying just talking bout it! dont get me wrong i have a beautiful flat but as my healths declined it really has put a strain on me, sometimes i just felt trapped as getting from my front door down to the car was such hassle and i would be exhausted!! and theres no window in bathroom so would get so stuffy and the flat is always like 100 degrees!! haha but now il be moving into a little bungelow where i have a front and back garden aswell, needs work doing on it before i move in but its all so exciting!! and i cant wait decorate it however i want and just make it my own!! and its in a lovely area too!! and which means finally i can get myself a lil pup!!

its just the small things that make the biggest difference...it will keep me busy, as i can boss everyone around as i very much doubt il be any use at diy...haha but i feel now with the stress of housing gone i can forcus on keeping myself proper well for whenever i get my call!!

im feeling very positive at the moment about transplant!! just got to imagine myself with new lungs and it will happen i know it will, not ready to give up and certainly not ready to let cf control my life, im only 21 iv got so many things left to do, and so much to look forward too!

chest feels so good, my sats are 94% off oxygen at rest which is amazing!!, and they have continued to lower my steriods, although im not sure i can afford this new love for food!! im literally eating so much i dont have a stop button! haha but i turn into a bitch if i havent eaten aswell, its a bit annoying being stuck here over easter weekend, i didnt really think it through no1s back until tuesday and by then i will be well and truely ready to escape! so il get them to get the niv sorted as soon as possible, thats just a matter of talking to the physio lot and there so good up here!

got a little pressy sent to me from my beautiful cousin nicola yday its very me!! hes a little pic



2,576 hours on the transplant list xx





Thursday, 5 April 2012

back in hotel brompton..

Its taken me quite a while to blog! firstly its cause i couldnt be bothered and didnt feel like i had much to blog about and then emotionally i didnt feel in a good place to talk about how i felt as things werent good and sometimes its bad enough going through it but then writing about it can make you feel even worse, and my emotions have been everywhere so didnt wanna make things worse! anyways im in a good place now and very happy and back to george! and feeling on top of the world!! :)

Right so where to start. I have now been in the brompton a week today!! i was orginally doing home i.vs to clear up an infection, but never really improved at all in the 2 weeks, if anything i had dipped, i was indenial about it although everyone around me could see it, i just didnt want to admit it to myself, the weather was so beautiful and the thought of being cooped up in a hospital room staring at the 4 blank walls would kill me so i was just convincing myself i was fine!

anyways it was like someone was looking out for me and giving me no choice to go up to the hospital, cause last thursday my port decided to stop working, was weird i couldnt push anything into it yet blood was coming back...very odd, so i had no choice but to ring the hospital and go up as i couldnt get any of my iv drugs in me! my port is a little thing hidden under my skin/boob lol u cant see it, only when a needle goes into it so i always have something i can access for drugs and ivs etc
the round bit goes under the skin and the needle is only there when im having ivs etc.




i thought that the needle may have come out or been stuck, and was hoping that was the reason for it not to be working so i thought its ok il just get needle changed, it will be working ok, see dr get some new drugs to go home with as my 2 weeks were up, but obviously this wasnt the case......

they took the needle out and it was very swollen, and tried to re access it but it was so sore and they couldnt get it in and i was getting quite upset so it had to be left! and thats when i had to come in.

had x rays, bloods and had to wait around on lind ward for them to find me a bed on foulis. took ages, by that time i had come to terms with the fact i wasnt going home but was still hoping they wouldnt find a bed for me! - they couldnt find one but i get the impression they didnt want me leaving so i was put into a private room.






i think they were a bit worried about me, normally i just see an sho when im admitted but it was about 6-7 and i had two nurses in with me, on call physio came up, had consultant, reg and sho in with me, had lovely blood gases and cannulas done as port was out of use!
sats were dipping quite alot so had to stay on constant oxygen, but been use to that recently literally havent been able to come off it.

i had crackles everywhere, chest was completely full of crap, weight was only 35.4kg-bmi was 15.9 and has to be 18 for tx, temperature was high, crp (infection levels) were over 200 and chest felt so tight, and obviously sats were just low, but finding it weird at mo about sats im not aloud to make, them go above 94% on oxygen as carbon dioxide levels can be too high all a bit confusing!!? im still learning myself! lol

anyways i was put on a cocktail of drugs and i was willing to have everything as i felt so rubbish and just wanted to be able to breath again! i even agreed to steriods which i havent been on since oct 2010!!
Had everything thrown at me once they got a cannula in, i was put on aztreonam iv, colomycin iv, steriod iv, ciprofloxacin iv, and aminophylline drip. and all i kept saying to everyone is please ring harefield, ring harefield, have you rung harefield lol there not always pro active here with harefield stuff!! i just want them to no exactly how i am!! worrys me that they dont no im dipping a bit.

so friday they tried to access my port again, had lots of numbing cream on it for a good few hours before they attempted as it was still quite sore. and got one of my favourite nurses to do it as she calms me completely!!

needle went it straight away :) but as soon as she put it in blood came back without even pulling was odd, but then the same happened could hardly push anything through, we managed to get about 3 mls of heprin and left the needle in as i was convinced it would get working again. but thats the last time they would go near it untill i had a portagram....

the weekend was a horrible experiance! cannulas are so painful, its amazing how alien they had become to me, i have had a port since i was 9 years old so i just dont no how to handle cannulas. it was so painful having the drugs pushed through, i kept reacting to the cipro and i was on constant drip so it was always been used and they dont last long anyways.

we knew my cannula was going, so tried to get a new one in before it did but my body was having none of it, couldnt get anything my left arm, tried long lines aswell and when they did get it in it wouldnt flush so then they started thinking maybe i had a clot in that side as its same side as port! i couldnt stop crying (thats the steriods) im normally a pretty tough cookie takes alot to make me cry oh no not on saturday even the word cry made me cry! was ridicilous! and very embarassing! lol

eventually got one in my right arm, doctor was lovely and brought me some haribo for being so brave haha felt like a right little kid again!
sunday was a better day lee came up and helped me move from the private room into a normal room, funnily enough the one i was in last time so right next to kitchen! ;)
arm was seriously getting more and more painful and was crying everytime the drugs were pushed in!! just wanted the weekend out the way so they could get me that portagram and i was beggin them to try my port but no1 would go near it at all!

finally monday came and i woke up after having morning drugs and asked if a portagram had been booked and nurse hadnt heard anything so little me had a cunning plan to get there arses into gear!! i told my nurse to take out my line as it was too painful and refused to have a new one put back in until they sorted port, obviously if port was a no go then id have another cannula but there was no way i was going through pain if i didnt need to!!

plan worked and had drs come in and portagram was booked! although they also told me they had booked me in for something called a picc line, so if the port doesnt work and there was a clot id have to have a picc line! as far as im aware a picc line goes thru a deep vein, they do an ultra sound scan on ur arm to find where it is, give u a local anaesthetic and then with the scan thing go for the deeper vein, im not 100% its not a nice thing to have tho!!

i automatically went into panic mode! iv heard horrible things about them and the thought of having one shit me up basically! and then there was talk about if my port doesnt work il have to have a new one, and they wont put me under so il have to be awake to have all this, and back to the steriods i just couldnt handle all this info, i shouldnt moan, a good friend of mine has gone through so much crap with having clots, and has had a few ports put in awake now and had so many problems and cant even have a port now and for me to be bothered just made me feel gutted for her and how selfish and lucky iv been.

so i went for my portagram, laying on that bed i dont think my hearts ever gone that fast in my life was worrying so so much!! it was so cool tho how they did it, me n mum really wanted to take piccys to show but defo was a no go in there...they push the liquid dye into my port (which may i add worked straight away) and when they push it they have an xray machine like showing its amazing!! and u can see the dye liquid stuff pumping around the veins into the heart etc..anyways so the port was working perfectly was such a relieve i literally cud have kissed the lady who was doing it!! and so picc line was well and truely out of the equation WHOOP!!

so off i went back to the ward happy as larry and smuge like yep told u, and georges veins lived happily ever after!! POW :)

so stopped the amo drip, steriods have now been switched to tablets first was on 30mg which i blew up massive whole body was swollen and sore but now on 20mg and by weekend will be 15mg then monday 10mg so hopefully by time i leave il be on 5mg or off them :) im such a bitch on them, had a bad day yesterday and just snap at people...esp if i havent eaten! then i get days like today where im normal and lovely! my appetite is amazing!!! so weight is most def not an issue, chest feels so much better not on constant oxygen, although everytime i have my sats done there between 88-90 so should be on oxygen but then they go straight up to 92-94% so maybe need a lil blast now and then, lung function is amazing for me its 21% which it hasnt been for at least a year!! but steriods do have this fake affect so im not forcusing too much on that, but its better than 12%

they have spoken to me about having an niv at home, someones gonna come speak to me next week about it to go home on, not really sure what it is, but im sure il be able to inform you next time!!
so things have basically been crap and writing this actually doesnt seem that bad but omg it felt horrible and so dramatic!! haha but im on the mend 100% happy will be outta this place in no time!! got so much to look forward too!!

heres me on a steriods buying half of M&S lol




now for the none cf stuff before i came into hos i had a lovely trip to london as a treat from my auntie quat and uncle preps! and me and mum and them all went to see chicago in theatre!! was so good really enjoyed it and all that jazz!! ;) heres some piccys!!



and lastly this for my amazing friend Mickey!! hes done yet another run raising money for the Cf trust hes done so well and im so proud of him for doing them all!! 3 half marathons in 4 weeks!! so come on guys please please sponsor him he well deserves it!! and its obviously for such a great cause you click on this link!!! http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=MichaelPark  also the links on the side of my blog!! heres some piccys of the last one hes completed xx



thats me im sproggy ;)






his proud son reis showing off his dads medals!! :)

thats all for now love love

2,525 hours on the transplant list xx