So i've been having my tummy problems still and nothing the docs have given me has worked so last night i was in tears as i was so uncomfortable and couldn't laydown to sleep. I rang my hospital in oxford but the doc wasn't around. then i rang nhs direct for advice the lady told me to go down to the mk docs walk in centre for a doc to see me it was about 4am at this point. So off i went my mum's bf was great and took me down there. we waited bout 20 mins to be seen then the doc asked me the normal questions whats wrong? are you preganant erm no lol! anyway he felt my tummy and i wanted to kick him it hurt so much. he thought it was either gall stones or a ulcer. he wanted to give me some strong anti acids but i was bit wary bout this as he hadn' aksed what meds i was on. He then said i had to go to the main hospital cos he isn't sure what Cf really is. So went main hospital and they tried to put me on a ward with old sick people that looked like they had chest problems so of course i got a bit nervous about infection. so i said i can't be next to other chest patients cos of my cf and risk of infection. and they were a bit miffed and said ok wait in the waiting room. i waited 10 mins and went home cos i was scared i got back to my mum's bout half 5ish and had a drink and relaxed. Got my peg op wednesday and gotta go up hospital fr mid iv checkup.
I am so full of wind argh! My doc thinks i am not digesting food quick enough so my body is holding on to it causing air to build up and push on diafram not nice! and very painful. The other night i coudln't sleep as i couldn't lay down and the only way to stop the pain was to hunch forward. not very comfy. I eventually fell asleep from being so tired. I rang the hospital they were concerened and wanted me to go up but i couldn't get there so went to my GP instead he had a feel of my tummy and it bloody hurt like hell. been given a tablet to help food move quicker through my body. hope it works cause this is just awful and i can't eat whilst like this as it just makes it even worse if i do. need to keep my weight on but it's hard :( Bloody Cf.
I have been very down the past few days as finding it all very hard to cope with one thing after another. it's to much to take at times. But must keep going. I think of toria at times like this as she'd be such a comfort to me she always knew what to say. Miss her loads. xx
Went back to hopsital yesterday to be checked over and see if the tobi nebs had worked but they hadn't so i said i think iv's are needed. My crp tho had gone from 33 down to 24 so that is good but there is still something brewing as i feel very breathless and frail. always a sign of infection. my appetite has nose dived in with the megace again sign of infection. I didn't want a picc line in as my arm is still very bruised from the last attempt so i have a venflon in my hand. Hopefully will have my peg date soon aswell as want to get it over and done with. I'm still getting my right shouder pain which really is upsetting me they keep telling me to take pain killers but it's not working. :( sorry i haven't written much am feeling very pants at the mo first few days of iv's are always rough it's alot for the body to take in. am gonna go drink some juice and watch some tv before my next lot of iv's at 1 bye for now xx
Has been a few days since i last wrote all been a very hard and stressful time for me at the moment so just needed to gather my thoughts and calm myself down. Tuesday i didn't stay in as there was no bed i already put this in my previous blog. Anyway Tuesday night i had gone home with my NG tube in and i moaned about it all the time as i just could not adjust to the sensation of it in the back of my throat. I then tried eating something and it just felt awful going down as it kept tugging on the line. So anyway i settled my self down to go to sleep and i started coughing rather alot and the line kept hitting the back of my throat next thing i know i had been sick and the line was hanging out my mouth so i had no choice but to pull it out. I was very upset as i knew the hospital would think i had pulled it out on purpose. My brother was really sweet and came and cleaned all my sick up and chnaged my bedding and got me some more pj's i hadn't eaten alot but man there was so much puke! sorry i was just shocked at the amount there lol. My dad came down to see what was going on and i was in tears cos of what the hopsital would say and he was sweet and calmed me down saying it wasn't your fault and they'll just have to deal with that.
So next day which was wednesday i was dreading going back to hospital. my mum and her fiancee took me. We went to the treatment centre and i was popped into one of the siderooms. after about 10mins one of the nurses walked past and said Jo you didn't meaning i had pulled my tube out oh what a surprise so i just calmly explained what had happened. Then again and again people kept presuming i had pulled it out myself so at this point i was pretty down and frustrated. Then the disscusion of having it put in again came up and i said no i've tried it and i couldn't adjust so no it's not happening again. But everyone kept going on and on and on my mum kept saying if you don't your gonna die cos they won't give you a tarnsplant. Then her fiancee said have you lost the will to live cos it sure seems like it the way your going. Then one of the nurses said do you not want a transplant then? OH MY god just cos i said bloody no to this F-ing tube does not mean i wanna die or that i'm going to or that i don't want a transplant! I am alive and kicking and am going to remain that way for a bloody long time. At this point i was on the phone to my dad crying my eyes out about it all. He said if you don't want it it's your choice your the adult no one can force anything on you. Then my mum and her fiancee came back and i just went mental and lost it they were just going on and on saying it's such a small thing to have done but to me it was not smal it was scary and i found throwing it up very traumatic now that may sound stupid but it really was that bad for me as i was very against the ng anyway but gave it a go to please everyone not that it worked. So my mum and her fiancee went and got all my stuff out the car and dumped it in the room with me and i kept saying bye then. Again i rang my dad he was really angry and kept saying i'm gonna come get you but i told him not to. Then one of the nurses came in and said i was hardwork and that everything always had to be about me and that my mother was just caring about me. I then turned to her and said she doesn't know what the realtionship between me and my mum is like and then she started going off on one and pointing her finger in my face so i said i don't have to listen to this FUCK OFF! She then lft the room. I may have been out of order but i had just lost it and felt so out of control from everyone going on at me and saying the same thing over and over again i really just couldn't take anymore.
My fave nurse who i can acatually talk to came in and calmed me down and we had a chat and i brought up the peg thing it had already been mentioned but i was not in the right frame of mind to hear about it. So anyway we chatted and i said if it's done under a general i'l have it.
Le me explain how my mind works. If people go on and on and on at me about this and that then i swicth off and won't do it. But if people all back off and leave me to think things over myself then i am more likely to co-operate. which i did.
So after our chat the picc line lady came in ready to insert a new one as they wanted me to have some iv's she got all setup and my fave nurse stayed with me. the local was put in didn't flinch as it didn't really hurt then she started pushing the line in but it kept getting stuck and then it hurt when it hit the edge of the vain! ouch! Then i started feeling very light headed and burning up so the nurse had to go get a fan and some water. The piccline lady kept talking to me saying are you ok? are you going to throw up? Then she said i'm just going to inject some more local into your arm! I was like no wait not a good idea right now then she kept going on and on are you ok blah are you going to faint. You know when you feel faint you just want every one and everything to shut up so that you can calm yourself down and concenrate on staying conscious well i am like that anyway. it's like when you wanna be sick and someone rubs your back i fidn that makes it worse! I may just be weird though lol. so anyway i then said please i can't talk right now just give me a minute and shhhh! After about 2 mins i finally managed to get it to pass and i started to feel ok again. I apologised to the picc line lady and explained i find it more helpful if people don't talk to me when i get like that she understood which was cool. she then looked for the vain and it had gone whoops! so she said i don't think we should try again as your vains have all vanished we can try again tomoz. I dunno why i nearly passed out as i wasn't scared or nervous about having the line put in. But when i had my first piccline done i went exactly the same could it have been a reaction to the local? hmmm! So after that i was taken to the ward and put in a sideroom as i won't stay in without my own room and bathroom to scared of catching stuff on a ward. plus i was always told cf's get priority over the rooms. So i settled in and chilled out. i had a venflon put in my hand no probs not painful in my hands lol. then they hooked me up to a drip so i could have some fluids that had some potassium in it. i was like what if i need to go for a wee how am i going to move as it was plugged into the wall. they were like just call us and we'll disconnect it. I thought well that's abit annoying for them and me as they'd then have to come back and re attach me so i worked it all out myself in the end it's not hard really just push the hold button and clamp the hand thing off and unscrew and your free lol. so i thought this way was much better saves them having to keep running in and out and i know if there really busy it'd take them ages to come do it. The machine was a pain in the bum tho as it kept bleeping everytime i moved my hand lol it didn't like the hand being moved. I came to a compromise with one of the nurse's to try tobi through the neb instead of iv's they were happy with this but were worried as my brp had gone from 15-33 in a week so something was brewing in my lungs. I slept pretty well that night until the machine started alarming cos it had finshed so unhooked myself and off to sleep again lol. Thursday was full of confusion i was being told that i could have a peg under general but my lungs have to be better then i was told iv's were starting today and then i was told i would be in over the weekend i was like huh what? So i rang the nurse up and she said no no friday your going home and iv's were holding off on and i'm gonna arrange your peg date i was oh cool can you please tell that to the docs lol. and then a nurse came in with some sedation for me to take she was like the picc line lady is here ready for you. I was like oh jesus not again. so back on the phone to my nurse i was like erm picc lady is here eeek! can i not just have venflons if i need iv's please i'm scared of the piccline lady lol. she said yeah no problem. so i was happy and the piccline lady said ok Jo no worries. so all was good. My mum posted a topic on the cf forum for me as it was costing a fortune to use my phone. It was about pegs and local and general sedation. most people had had theres done under local with some sedation and remembered nothing about it so i was kinda like oh ok hmmm interesting so i gave the nod for it to be done under local with sedation as everyone was concerened about a general being to risky. so should be getting it done soon. Also had to have some test done cos of my cortersol levels have dropped really low and it could be a cause of the megace. :(. i also found out how the other girl who was put on megace was doing it turns out it was making her hair fallout! so they took her off it she is due to have a peg to. My dad came to see me he had just sat down when one of the cf nurses came in and said oh it's just aswell your dad is here you could be being let out today. i was like really? i was all prepared for another night lol even had my pj's out ready for bed hahaha! So the doc said i could leave so me and my dad packed my stuff and off i went YAY! i got home and relaxed it felt weird being home tho always does after hospital lol my cat wouldn't come near me. I slept pretty well again that night.
Friday my dad had booked a few days off work to chillout with me. i rang the hospital up to get the results of the test that was to do with cortersol levels and they had come back out of the normal range so they might have to either re test monday or stop the megace. :( i'm sad about it as it really is helping me eat. but it maybe causing damage to my liver :( so unfair! i just slept most of yesterday. I watched the big brother final and was shocked at who won ULRIKA!!!! who the hell vted for her! i wanted verne to win :( he finished 4th. Today again i have spent my time relaxing and taking it easy i really feel like the tobi is wokring for me as i am so dry and ardly coughing. oh the docs also looked into my shoulder pain and it's something to do with mucus plugging and killing cells in that area so the pain is not treatablt and i just have to keep taking strong painkillers great :( so wheelchair it is for when i go out anywhere then great! Got my grandparents coming over tomoz haven't seen them for a few years. back to hospital monday will update you all about it then. bye bye
Where do i begin? I had a terrible nights sleep as was so worried about geting this NG tube put in. So when i had to get up and pack my things to go into hospital i just couldn't pick the energy to do it so rang my mum to come help me. she sorted everything for me and i got dressed but couldn't be bothered to put makeup on as i felt so pants!
We setoff for the hospital about 12ish and got there about quarter past 1. When i got there i had to go treatment centre as there wasn't a bed free on the ward. I thought they had one waiting for me! So it get's to half 2 and still nothing then the nurses come in to do my NG tube and i was like but what if there isn't a bed? and they said then we'll just pull it out. So i let the nurse do it and she tried 5 times and it just wasn't happening as i kept gagging and coughing it was awful. I said no i don't want it now. They left the room to give me a breather and went to ask one of the other cf nurses to have a go. I kept saying to my mum and ian i ain't having it now i can't handle anymore attempts. then the nurse came back asking if i would try putting it in myself i was like no way! so then the other nurse had a go and she got it down first time which is just aswell cos i said she could have 3 goes and if she don't get it then i ain't trying anymore. So it is in and i am hating it it feels so uncomfortable it's hurtin my throat and my nose argh!! Anyway they still hadn't got me a bed and by about half 3 they were saying there was a bed free on the infectious disease ward which is all side rooms i was like erm no i ain't going there. chst ward side room or i am out of here. I got really upset as i didn't think i'd be sitting around waiting for 5 hours i was tired and angry and just couldn't take much more. by 5 there was no bed free anywhere so was told to go home and come back tomoz morning i am going to have a new picc line put in as well. I have to admit i really shouted my head off today i was so angry about being messed about. I was nervous as it was about this ng tube and really didn't need all this hassle with it.
Obama was sworn in as americian president today big day as he is the first black president. I kinda thought someone would try and assacinate him or bush today as there was so many people in washington i know that sounds mean but bush ain't very popular. and there's bound to be racist out there annoyed that there is a black president. Hopefully he'll do great things for his country I am just gonna wait and see before making a opinion on anything. Shame we can't get a new PM here gordon brown is rubbish we need someone who actually cares about what te people want and need whereas i don't think he cares. anyway gonna try and eat something now as am feeling hungry prob won't update til am out of hospital which hopefully will be friday. so bye for now
I rang my clinic again today as i wanted my blood results and to put across my concerns about my weight and having to wait 6 weeks for ng feeding. So anyway my nurse said that she is gonna ring me next week and sort it all out as i will need to go in for a few days. which i kinda expected anyway. My crp is 15 which is good it is up a bit but not by much so ivs weren't needed i think my lungs are trying to grow something tho but i shall not let them lol. my potassium is low so have to have some tablets for that. Also my cortersol is low which can be a side affect of megace as i am now on 3 tablets a day which is 420mg so they will let me know what needs to be done about that next week. I am very up for this NG feeding as i really want to get on that list i have never wanted anything more in my life! I mean i am eating lot's but it's just not enough i am pleased i got my kg back but still gutted i hadn't gained more. I went docs this afternoon about my shoulder. he pushed on the area i said i get the most pain and my face said it all lol it hurt! got some iburfofen gel for it to see if that gets rid of it. also had my anti acids changed as i have been getting very bloated and windy after food which isn't nice and very unconfortable i walked into the docs today aswell which was nice just linked arms with my mum which made it easier. I am worried that my pharmacy are going to have toruble getting some hypertonice saline as they were abit miffed about it but will see. fingers crossed they get it. anyway i feel happier now i have got my concerns across to my team so hopefully it is all gonna get moved along quicker now :) xx cheers gemma and tori your comments didn't upset me your both so right bout what you said :) xx
Well had clinic yesterday and although i got off without having iv's and my weight being up i still felt unhappy. I dunno just feel like no one is listening to me. my chest is being a bumhole and playing up and i'm producing more crap from it. And my weight it's fab that it's up but i expected it to be more it's 46.6kgs. still along way off where i need to be they said they would give it another 6 weeks and i'll have ng tube fitted but can i really afford to wait? i feel stupid cos i should of tunred round and said what would you advice me to do? Ng now or wait but didn't think about it well they wanted me back in 4 weeks but can't fit me in for 6 weeks kinda feel not important sounds harsh i know but there are 2 patients who are having tx assesment me and someone else. so no offecne but you'd think we'd be higher priority as we need all the help to get where we need to be. Just feel bit down about it all. I mean when i went harefield Dr carby said he wanted me in asap and that he can't wait 6 months for another appointment as i need to go on the list as soon as and that he thinks there will be nothing to stop me going on the list. But he can't do anything till i am 50kgs and it is really getting to me now as i have tried so god dam hard i can't keep waiting anymore. by the time i have the ng and the weight to get on it will be 6 months since harefield. then gotta have all the tests and my teeth sorted it's so stressful dunno what to do anymore.
Oh my god this morning i was so tired. I had been watching the x-files till silly o clock and then couldn't sleep cos i was scared of aliens lol. (Yes i'm a wimp) lol
I then remembered i couldn't have a lay in as had to get up for my shopping delivery. It turned up at about quarter to 1. and they hadn't got 3 things i'd ordered. like pasta sauce and cat food which are the 2 main things i needed. So wasn't happy. They hadn't charged me for them but there thing was if they can't get the product you ordered they'll give you something similar and charge you the same price as the one you ordered. but they didn't bumholes! Me and my brother had a argument this afternoon as he really annoyed me i put half the shopping away and then sat down for a rest and he said to me the simplest thing and you act like it's the hardest thing in the world. Well yeah to a normal person it is simple but to someone with Cf it ain't so easy. so i got the hump with him and told him he was putting the shopping away like a monkey (meaning he wasn't doing a very good job) he then stormed off upstairs lol. I had a nice nap and felt more happier so called him down and apologised for calling him a monkey lol and he also apologised to me. So me and my dad had to pop to tesco when he finished work and get some cat food and pasta sauce. I also got some cookies lol and some jelly tots and m&m's mmmm! anyway also got my brother birthday cards as it's is 26th tomoz.
I also found out my uncle was taken into hospital tonight with chest pains. He may need a quadruple bypass and he also has unstable angina. So am very worried about him now. Heart problems runs in both sides of my family my dad's dad has angina and my mum's dad and other brother died of a heart attack. Got my fingers crossed he'll be ok. I really feel for my mum aswell cos she's so stressed with me having CF and worried about my future. (i'll be fine tho i'm a stubborn cow lol) And now worrying about her brother it's awful wish i could give her a cuddle but will give her one tomoz when she comes over. anyway best go do my nebuliser now. bye bye xx
I haven't written for a few days cos not really had alot to say to be honest. Friday i got my a £5 gift card from asda to make up for there trolley staff being bumholes! And i also received a letter from The income support people saying it has been really cold so they are giving me £25 into my account as part of there warmfront thing which was wicked as i didn't know what the hell to do. Wasn't sure if i had to claim or what but apparently i don't everytime it's below 7c for 7 days in a row they will give me a extra 25 pound :) And it has been bloody cold lol.
Yesterday i chilled out my brothers birthday presents came yesterday so he is all sorted now. I also bought my self some games for my Nintendo DS to keep me occupied. I bought America's next top model i was really looking forward to this game but it has turned out to be a big disspointment it finishes to quickly it took me about an hour to finish it and now i'm bored and don't wanna play it again lol. I also got a game called hello baby you have to raise a baby and get it to 1 year to complete the game i have finally got the hang of it as my baby hated me lol But now i know what i'm doing he loves me and has just learned to walk awww he's nearly 1 already :P lol. Me and my dad were gonna go asda tomoz to get some food shopping but found out the MKdons are playing at home so traffic will be a nightmare so i done it all online instead lol. Got my clinic appointment thrusday which i am kinda weirdly looking forward to. I think it's cos i feel really well the best i have for ages now. and also cos i can see i've gained quite a bit of weight it's all those m&m's i'm eating lol and my supplements. Me and my dad have been guessing my weight lol he reckons 47.5kg's I have said i reckon 46.5-47kgs we shall see on thrusday as i don't weigh myself at all only get weighed at hospital lol. plus the hospital scales are more accurate as they are callibarated.
well anyway i am starving so i am going to make some carbonara mmm! bye bye all xxx
Today i've been feeling really happy. My chest has been good so been more awake and alert. Today i received a email from Asda as i had complained about the till aisle's and the trolley men. The lady was very nice and explained that she had spoke to the manager of the store and that if i have anymore problems to contact her again. She then asked for my address so that she could send me a gesture of goodwill which i thought was really nice. I did explain that i don't normaly have problems there so was very dissapointed when i did have.
a couple of my brothers presents are on there way which is cool. I cooked my dad and brother dinner tonight thought it would make a nice change for my dad as he comes home has a shower then does dinner. mostly cos i have been to tired and my brother is a rubbish cook lol. My dad also picked up my repeat prescription which i was nt happy about as they had forgot to put megace on it. The first thing i had asked fr was that as i knew i was nearly out. So i rang them and explained it all the lady said you need to do another repeat prescription again which means you have to wait 48hrs for it :( So i just said to her it is kinda urgent and asked if my GP was avaviable to ask for it. He isn't in till tomoz thought so the lady went and found another doctor. She said i can collect it tomoz which is cool cos then me and my dad will go boots and get are meds and then i said i'd buy a mcdonalds for dinner hehe mmmm! apple pie :P
well kittens i am going to go for a nice hot bubble bath. xx
HELLO! So the last time i blogged i was feeling really down and pants! Wel today i feel fab i changed my neb drug from colomycin to gentamycin and it is working my chest is feeling clear and i can breath (well better then i normally can lol ) anyway i woke up at about half 7 and stayed up for a few hours had breakie and watched friends then had a little nap. I woke up again about 11ish. I chilled and watched some more tv. then made some carbonara for lunch mmmm! and had a mini milkyway. i then had a call from Jo the dietician at my hospital just talking bout bg tube feeding she said that i can have a tube in that could last for months which makes me so much happier about it all as i don't want to have it being reinserted all the time. So am happy now. I said i was on 3 megace tablets which they are fine with just gotta keep an eye on blood sugars. And i have a appointment for next thursday at clinic. I plan on walking in depending on how my lungs are that morning.
I ordered birthday presents for my brother from hmv last week but they weren't sent out 24hrs like they said so i cancelled that after waiting til friday for something to happen. I then redone the order on saturday hoping that something would be sent out today but nope nothing so i have cancelled it again and ordered everything from asda now. hopefully it will all be here by next wednesday as that's my brothers birthday.
I am into mini chocolate bars at the moment lol hopefully that will pile on some pounds. I tidied my room today as it needed it badly. And i got my avon order today yay got my mum some more charms for her charm bracele that i got her for xmas she now has every single one that you can get. I am sure they'll make some new ones soon though. anyway i am off to make a nice cup of tea and eat some Jaffa cakes mmmm!
ARGH!!!!! i'm having such a rubbish time in 2009 so far. My lovely chest has decided it wants to start misbehaving and cause me grief. walking to the kitchen is abit of a chore at the moment so is cooking and getting dressed yep i have a chest infection again. and i am also struggling to eat cos i feel so pants. so am taking 3 megace tablets. I am so having a NG tube if they can keep it in for 2 weeks at a time don't care bout it being visable.
Went to Asda today with my dad and went in my wheelchair. We couldn't find a trolley that attachs to the chairs so went and asked the 3 trolley men that were standing around doing nothing. There reply was "ERM I DUNNO, THINK THE LAST ONE IS BEING USED" then another one said "NAH I PUT SOME UP THE OTHER END OF THE STORE" then they just stood there staring??? No offers of getting us one so me being erm me lol I got angry at them lol I said bloody useless twats!!! then my dad turned round and said to them yeah thanks for your useless help! idiots i tell ya! so off to the end of the shop we went outside aswell this was. It was bloody freezing! We got one eventually and as we went back to the entrance the 3 trolley boys were play fighting with eachother which made me even angerier! After we had done our shop we went to the till now we have never had trouble getting the wheelchair and the trolley through the isle before but today it just wouldn't fit have the till isle's shrunk? they must of done so yes this kicked me off again and my dad had to push me right round all the tills to the end to get through to the end of our till I felt like a right useless cow! stupid lungs if only they'd work and i wouldn't have to be such a hassle! ARGH!!!! My dad never complains though but i feel guilty cos it's just such a hassle for him. Saying that i feel like a burden to everyone in my family i hate it. nobody complains about helping me but i dunno i just feel so guilty for them doing it. I emailed asda though complaining. Why can't 2009 just be a nice year for me argh!!! i'm stressed about getting on the transplant list but the weight just ain't going on so yet again i have to wait til the end of jan for this bloody NG tube then gotta get the weight on fuck sake it's just so hard ARGH!!! why can't they just take me for the weight i am now God i wanna curl up into a ball and cry. CF is shit fucking shit. *excuse my language i'm just so fedup*
my mum really believes i'm going to get some new lungs this year but i don't share her positive spirit cos i feel so crap and am trying and it's just not going!
Hello everyone My names Jo i'm 24. I suffer with Cystic fibrosis. I Live with my dad and older brother and my dog dave and cat inky. I go and stay with my mum and her fiancee every 2 weeks for a few days. I enjoy chilling and watching films . Love eating it's my favourite hobby!