Been a while...

So!! Its been a while since I've made a posting!

Things have been quite difficult for me lately and so I've been pretty much disconnected from everything and I'm now just managing to be able to think about starting to get back on track...

In December i had an infection that was my worst one i had ever had, i was in hospital for a few days as i had 2 episodes of coughing up blood for the first time ever and then i continued on home IVs which i had already started previous to going into hospital. It seemed like i got better, some things picked up i started to get a little bit of energy back and some of my appetite. Bits and pieces like that which indicate to us CFers that generally something is starting to go right for a change and that were going to start getting better.

I went back to the gym, i went back to Uni, i started to put my "life" shoes back on again. I think that's where i went wrong, i went back into things too quickly after being so unwell and just didn't give myself time to rest properly. Hindsight's a bitch sometimes!

So i ended up getting ill again, i had the same feelings as in December, things started to show they were in decline again, my energy disappeared, my appetite diminished. I got very low again and spent a lot of time either slouched on the sofa or throwing up in the bathroom. Not impressive.

So after trying to go it alone again 'coz I'm stubborn, i called the hospital and told them everything that had been happening. I don't think they were impressed i had waited so long to ring them, but they know I'm a stubborn cow sometimes. They put me on the priority list for a bed and within 2 days i was in hospital and being pumped full of lovely IVs, paracetamol, ibuprofen. Luckily i didn't have any bleeds this time, but i think that was because of a few factors, namely that my chest had dried up like a desert but i could feel that it was full of it, as i was wheezing like mad for the first time in years! Not even my inhaler would relive it.
I was hitting temps of around 40 and i had god knows how many blood cultures done when in hospital, i had 3 ECGs, 2 in one day as my heart was beating so fast it was really uncomfortable sometimes. I had to stop moving around so much and just rest on nurses orders to help try and settle my heart rate and also to get my pulse rate down as well. I went on oxygen again to being my sats up and had my obs done every hour for the first 2 days i was in there. Needless to say my mood from total lack of sleep was not pretty.

Mum came down on the first weekend i was in there and i argued with the nurse about being allowed to go down into town for a little bit and get some real fresh air and real edible food for lunch! I think she thought i was going to escape home, but there was no way i could look after myself while mum was at work. So begrudgingly i did admit to myself that i was in the best place, even if the food did look like the cat had coughed it up sometimes! Thank god for the £6 i spent on my massive bag of pick n mix :p

Eventually i won the argument with the nurse and she let me go, but made it clear she wasn't happy about it. I think what won it was that she said she has to ring the on call Dr to see if i can go out and i said that even if they said no, i would still go out anyway!
So i had breakfast - a lovely fry up, and a KFC for lunch! It had to have been the best day i had had for a few. Although it totally knackered me out after i got back to my room, i was so pleased i had managed better walking and was thankful for the change of scene and fresh air. Sometimes i don't think some nurses get that its depressing after a while being on your own, looking at the same four walls alllll the time!

Another reason i hate being in hospital is that it is always a clear reminder of how alone i actually am and feel right now. I have no friends who come to visit me, and next to no family come to visit me. I have no get well cards sent to me from friends and family, i have no Internet so feel totally disconnected.
Thankfully i have my amazing mum and my best friend Emily. Although my mum can only get to visit me on Saturdays, its the best ever when i see her! It doesn't matter that I'm pretty much always on the phone to her when in there (thanks Orange for magic numbers and my free mins :p ) seeing her is totally different as i can actually get that much needed hug and get to slap a real smile on my face!! :D I know that if it wasn't for work, and the extortionate fees for public transport she would come and see me everyday. I just hope she knows that i do fully understand that.

My best friend would come and visit me i know that, but at the moment shes on her Uni placement in France and so obviously cant, which i know pisses her off as she knows that no other friends bother to visit me. They have their excuses of not liking hospitals, or that they are too busy, then i see on facebook they are moaning they are bored. Yeah cheers for that guys.
My family are the worst. They don't understand CF and the extent of the damage it does to someone, physically, emotionally and mentally. Not just to the person who has to suffer with it, but their parent(s) and sibling(s) as well. My aunt totally pissed my mum off. We were trying to arrange transport for me to be able to be discharged on home IVs. Taking all the meds which is usually two large carrier bags, a huge sharps bin with all the syringes, needles etc inside and my stuff i took into hospital is not ideal to take on a train journey home! So we asked my Aunty if she could pick me up and take me home. She said she couldn't do it, fair enough at least we tried. I then saw the next day on facebook, when i was being discharged that she was in Bristol, down in the town not a 20min walk from the hospital i was in!! Shopping. Of all things, for the birthday party of my other Aunty that we hadn't been told about or invited to. Granted its more than likely we couldn't have gone but it would have been nice being family members to have gotten an invite! Is that selfish of me to think that??

As i wasn't being discharged until about 5pm she could have gotten in her shopping day and then come and collected me. She has a large car so its not like shopping bags would have taken up room. It really angered my mum, more because my aunt is always saying if theres anything she can do to help let her know. Yet every time we ask she always says no, cant do it. Theres always some excuse which isn't always true. So were not bothering to ask her anymore, for anything.
It pissed me off as well, but it upset me as well as it felt like she was saying that she doesn't care about her niece or her sister (my mum) enough to just do this small thing for them that would help them out hugely. Yet she goes to see my cousin right around the corner from me who has cancer whenever she can! I think its because she doesn't understand CF and doesn't see or get how bad it is/can get for me. I don't think she gets that it can kill me, just as much as cancer can kill people. Cancer everyone understands, you can see the devastating affects of that horrid disease. You cant see the devastating affects of CF. People think naively that as the person is up and walking around themselves that theres nothing wrong with them.

I had my annual review yesterday, which didnt show up no surprises really as i had already been spending so long at the hospital. Basically the annual review showed that im worse than last year and still struggling.
Im having my PEG put in on the 29th March and ill go in a few days before that for some IVs again to make sure my lungs are in as good a condition they can be for dealing with an anesthetic, even if it is a local one and sedation. Then for a few days afterwards ill be trained how to do home feeding via my new tube and then be allowed to go home again. I swear they should make me a permanent bed for me there lately :|

Hopefully that will gain me the weight i need to battle these infections i keep getting. If i can have a better summer than last year health wise itll be a start!

Anyway i think this post is long enough now!
Hope peoples are well!!

Never say Never...

Ive been meaning to write a blog for ages now, its just that every time I've loaded the page to write things that are swirling in my head, i cant put them into sentences no matter how hard i sit there and try.

I'm still not totally sure how this post will turn out, but I'm just going to type and see what happens.

My thoughts of late have been pretty much 100% focused on CF. Sounds strange as living with this disease you'd think that i was thinking about CF all the time anyway. But i don't. I try not to anyway, otherwise i just get myself into a right mess in my head and i cant focus on anything. I loose myself, and its not a nice loose myself like when I'm staring at the clouds making pictures, its like i get trapped in my head and I'm surrounded by all these nasty, horrid thoughts and scary possible futures. Its tough to deal with, and tough to get out.

God! i bet i sound like a right mental patient!! But oddly, lately thinking constantly about CF hasn't trapped me in my head this time. Its like i found the window in there and I've been able to open it to allow some of the nicer thoughts in that were stuck outside before. The good realities that could happen instead of the nasty, horrid ones. Don't get me wrong they are all still there, its not like they all floated out the window.... but, well its like they've gotten smaller, less threatening and scary.

Honestly I'm not sure what changed to make them less scary, but I'm glad of it! I feel a tiny bit more free from the grasp of CF. Tiny doesn't sound a lot, but it feels huge to me. Perhaps its because I've been less stressed. I haven't been well AT ALL lately, and I'm only just now feeling like I'm getting to put my feet back on the floor. My toes are touching the floor at least. Usually when i get ill i worry about Uni and about the extra care i need to put into getting better, but still maintaining my coursework (the uni don't give extensions in any circumstances, so its hand something in or fail, submit extenuating circumstances and hope u can resit for free and uncapped at 40% in the summer) and general life. But this time, getting this ill, it put a lot into perspective. I made a pitiful attempt at the coursework i had due in 'coz that was literally all i could handle, a friend kindly handed it all in for me and i handed in my exten circs to resit in the summer before i graduate this year. I didn't get stressed about the coursework once, or worry about handing it in and passing. I just didn't worry at all about anything to do with Uni. I put it all on the back burner and just ignored it. I put all my energies into getting better. Which was and still is very hard.

I don't know what made me change this time around. I had been told how sick i could get and heard stories, seen other CFers put things on their blogs and facebook about things happening to them during infection and i just thought every time, i thought, "ah that wont happen to me 'coz I'm not that bad with infections" I thought naively that all my infections were the same each time. Extra tired, lack of energy, lack of appetite, increased cough etc etc. But this time was totally different, and threw me right out of my naive comfort zone.

I was throwing up constantly, i was coughing so much i couldn't breathe, i was coughing up blood for the first time ever, i had temperatures that made me feel like i was a melting snowman in the blazing sun, my heart felt like it was trying to burst out my chest, i could barely get out of bed for energy, i couldn't eat 'coz i felt so nauseous all the time. There was just no let up at all! I ended up in hospital, my sats were in the low 90's which is totally not normal for me as even during past infections they've not really dropped, and i was put on oxygen for the first time ever. When i thought i would never be on that. I had to have an ECG to make sure my heart wasn't doing anything they couldn't see with the increased numbers, my temperature was sitting at best around 38 at highest it got to 40. I was very ill for my standards. I was also very scared but i wouldn't admit that at the time. My lung function dropped to 38% and my weight down to the low 40's kg...

Its taken a lot for me to get to where i am now. Which still isn't better, not at all really. Sure all my numbers baring weight and LF have improved but its still not good enough. My appetite is coming back slowly, the past 2 days have been good for eating, including eating a cake i made with mum!
I'm trying to best to be compliant with my nebs and meds, but getting back into a routine is proving harder than it has before.

But ill get there. I always do eventually...

been a tough time of late...

I dont really remember what my last blog was about, so forgive me for anything i repeat.

Ive been really ill lately. Its THE worst infection ive ever had. It started with me getting a simple cold, which went as usual down onto my chest and decided to set up camp there :( I got progressively worse, and ended up on IVs much to my annoyance. I was on orals before hand, which were doing the trick combined with being compliant and regularly going to the gym, then i got that cold and it was all down hill from there really.

My lung function has dropped to its all time lowest, and is sitting at 39% at the moment, so everything is a real struggle. Mums been great, helping me to wash, washing my hair, helping me to keep up eating and drinking. Generally trying to keep me warm and feel the best i possibly can when feeling like crap if that makes sense. I didnt go into hospital straight away as i wanted to stay at home, and keep gaining weight, as that was the only thing that had gone up. But i ended up getting worse that i had no choice to go into hospital.

I went to town with mum on the 5th and walked up from the bottom of town to get a taxi home, when i had to stop and catch my breath coz it was really cold as well so that makes it extra harder. I ended up having a coughing fit, and coughing up a serious amount of blood. Cue freaking out!! I had never before coughed up that much, the most id ever coughed up before was a streak or two. Nothing huge at all! So to be stood outside the taxi rank coughing up loads of blood, and proper freaking out i was not in a good way. Thankfully i was with mum so she was helping me to keep calm and try to stop coughing so much to stop the blood. I got home and went to sleep on the sofa. As i had clinic the day after i didnt worry too much about ringing the hospital. I told them all when i got the hospital and they wanted me to go in that day but it wasnt really feasable as it meant going home to get things, and then coming all the way back. No way we could afford that or that i could manage it on the train again, i only just made it there in the first place!! So we agreed that id go home, they would ring every day to check on me, and if anything else happened or more blood then i would tell them and go in more than likely.

Just my luck i had my second episode of coughing up loads of blood again on monday evening. I woke up from sleeping on the sofa and was extremely hot from having a raging temperature, started coughing and had to run for the bathroom to cough up blood :| Not nice. I decided then to take a bag in with me to hospital the next day. I rang the clinic in the morning, left a message for the dr to ring me and left for my journey to hospital, thankfully again mum was with me, as she had rung up work and said she couldnt go in due to having to take me into hospital.

I was admitted that day, there was a right fiasco with waiting for the bed to get sorted, but i cant be bothered to go into that right now. I will say that i didnt get into my room until five to midnight tuesday, was severly pissed off and felt like total crap beyond words can describe!!
While in hospital i had my obs being done every hour as my heart rate was through the roof, so i ended up having to have an ECG and seeing the on call dr. She ordered me an xray, which i was finally taken down for around midnight wednesday night i think it was!! Not a happy bunny as i didnt get to bed until about 1am that night!! Once again pissed off. No wonder my heart rate was through the roof!
I was being ploughed with paracetamol as my temp went up to 39 degrees! I was freezing one minute, dripping with sweat the next!! Couldnt win, rather uncomfy as well :(
My sats were sitting around 90 which granted isnt as low as some peoples ive seen, but its very unusual for them to be like that, so they put me on 2 litres of oxygen as well. First time ive ever been on oxygen and so i was a little freaked out by it all! The tube thing is SO annoying to go to sleep wearing :| and as that was when my sats dropped even more i had to sleep with it on. Thankfully by Thursday i hadnt coughed up any more blood since admission due to some nifty tablets i was put on to help stop the bleeeding and settle my chest, my temp was a bit more stable without paracetamols, my heart rate was down to 118, still not great but thats normal for me really. Also my sats were sitting comforatably around 97 again without oxygen.

Dr came to see me on friday morning, as i was finally awake when they did rounds. and said that i was looking so much better since she saw me on admission day, and to be perfectly honest i felt so much better!! i had slept a fair amount which i deffinetly think helped me loads. Sleep is the best medicine... as well as laughter :p
So it was agreed that i could go home that day, and as i still had all my IV stuff at home it was the shortest discharge in history :D

Im still not better, and im still on IVs, but i am feeling SO much better now!! Im still sleeping a lot, but thats okay. My appetite is picking up loads as well which is great! Ive got a long way to go, to feeling miles better that i want to feel but i think ill get there eventually...

Hospital and IVs

So I got my IVs two weeks ago today, and i felt so so much better after just 48hrs!! My energy came back, my appetite picked up, my cough started to die down a little, everything just started getting better! It was like a weight was being slowly lifted off my shoulders, and that's the first time I've ever felt IVs do that... Finally I feel them doing what the team always tell me they are meant to be doing! :D

Ive never been more excited to be able to have a proper shower ha ha! Ive been washing my hair over the bath and its not been a struggle, i was naughty and couldn't stand it any longer and had a shower yesterday 'coz i was itching so much it was driving me insane! But i washed my hair under the shower rather than over the bath and it wasn't a struggle as much as it has been in the past :D I still got out of breath but not as bad, which made me happy.

When i had my mid way appointment my numbers weren't really changed much. My weight was still 49.4KG and my LF was still 47%, but i explained to the nurse that when i went home on the IVs, the Saturday and the Sunday morning i threw up from coughing so much (i was definitely sure it wasn't a reaction) and so it made me very wary to do my Neb's properly if at all, which didn't help with the whole clearance of my chest. They accepted it and understood (thankfully) and wrote it on my notes. Thankfully those were the only days i was sick as after that my coughing started to get easier in the morning and more controllable for me to catch my breath.

I can now sleep at night without waking up coughing all the time, which is bliss :D my energy and appetite is still picking up, for the first time since i moved back home my snacks are diminishing ha ha! Me and mum are doing the food shopping tomorrow so ill get some more things.

I was quite disappointed today when i went for my "end of 2 weeks IVs" appointment. It started off fine, i had a session with the physio to start with and had a go on the NIV machine, (its meant to replicate the BIRD machine, if any ones tried that?). It was okay, I'm not sure of it at the moment, but the machine I used was being a bit temperamental and so the physio is going to look at my next clinic appointment and I'm going to have another go but with a better machine, and then if i get along with it, then shes going to look into getting me one for home. Which will be good, as it did work to an extent as i shifted and loosened a lot on my chest.

After that i had my clinic appointment. Which also started off well, i was in a really good mood. Got weighed, which has gone up to 50.4 from the 49.4KG it was, so that improved my mood even more :D My blood pressure and pulse was down to a more normal rate, which is another improvement as its usually racing way too much. Then came Lung Function. The dooming part of any clinic for me...
It was a little tough as i kept coughing halfway through a breath out :| But i did it all and then got the results and found out its so say dropped from 47% to 44% ! I honestly don't think the results is correct. The physio had listened to my chest and said it was really clear, and usually when my weight goes up, so does the lung function for me.

I think its because i had done all that physio before hand, even though id had a break between sessions, everything was all mixed up on my chest and so of course when i blew out quickly it made me cough and interrupted my breath out. I said to the nurse that it doesn't reflect how i feel at all. Not one single bit, and she spoke with the registrar, and i was given two options, to ideally carry on IVs for another week, or to come off them today and then come back in two weeks. I chose that one. So I'm back on the 6th August to reassess.

So between now and then I've got a lot of work to do, to prove that machine and my lungs wrong :p
But with my new found energy, it'll be easier to do this than before. Plus with no IVs happening i can go swimming :D

Year 2 reflection and being home

So like I said I've now finished my exams, and completed year 2 (depending on any possible resits in the summer) I'm so happy its finally all over. When i first started my second year i was all prepared and had a plan in place for doing well and keeping on track, and it was for once in my life a realistic plan! But obviously not realistic enough. I was well when i created this "plan" and so wasn't accounting for how unpredictable CF really is, and how it seems to strike when things are feeling like they are going well.

I ended up getting fairly unwell and was in hospital for about a month, this completely threw me off my "plan" and i lost track totally of uni and missed a great deal, thus making my exams much harder than they should have been. However i made it threw the academic year and I'm trying to create some plans in advance as best i can for my third and what might be my third and final year...

I'm living at home next year (academic year) and so that will help me out a great deal health wise, as mum will be here to help take care of me, make sure i eat, keep on top of my physio and work, and general "have u taken your pills" arguments that ensues after a nice meal lol

I can also start up my running route again, and I'm hoping to eventually be able to get back onto my bike and ride to and from the train station and my house as ill need to get the train to uni every day, which admittedly will be knackering, but after i get into the routine i think ill be okay and as long as i get plenty of rest and keep everything up ill be okay. It should get my lung function back up there as well! Which will please my physios immensely!

I'm at home at the moment. I came home on Saturday for a car boot sale with my mum, which she bought me a photo frame and a large fluffy duck as end of exams presents :D They pleased me immensely :)

I'm supposed to be going back today to Bristol to pack my things up and I've also got a hospital appointment tomorrow and Wednesday (2 different days as two different people) and i know they want me on IVs, but i managed to get back 7% of my lung function, so i know that i can do more for myself without IVs, besides i don't have the energy just yet to deal with them as home IVs and i don't want to go into hospital now, and as I've not got any uni commitments i have more time for myself to focus on my health! I'm putting my foot down and doing more for myself, i don't feel like i need them anymore, no matter how much the Dr wont listen to me. I really don't like her! I prefer the other consultant i have but now hes moved higher up in the CF unit, he doesn't see many patients which sucks :(

I'll either go back to Bristol today or tomorrow morning. I'm leaving most of my things i bought home here as there's no point me taking them back only to have to just pack them and bring them back again...

I'm really enjoying being at home again, without a care in the world with regards to uni at the moment. I'm loving having nothing at all to do, although its hard to think what i did with my time before uni :S
I know ill get bored with nothing to do soon enough, but mum finishes work for summer hols soon so well have plenty to do as we've got some nice days out planned :)

Speaking of mum, she'll be home from work soon, and I'm still not showered or anything so better get a move on!

Port Operation!!

I wrote this blog on a word doc before i got the internet in here, so it is written pretty acurately which i think is good and quite important. Although i can still recall most of my feelings of how i was at the time, and it still gives me butterflies in my stomach, i dont remember all the thoughts i was having at the time. So this blog is going to show how it all was for me at the time of it happening rather than in hindsight.


Please bear in mind this will be a long post!

Date: 13^th February 2010

Title: Before and after port operation

Op prep and being put under:

So when I first went in for a regular check up a few months ago I asked my doctor for information about ports. At the end of that appointment I wished I hadn’t even mentioned it. He said that it’s an option we need to start thinking about taking, and I ended up going on IVs that day, and at the end of the third attempt to get my line in, he said that it’s definitely a route we need to discuss in more detail… It went from me asking for some info about ports, to me possibly getting one myself in one appointment!!

Over the next month I think it was I was talking and thinking about ports a lot. It was the front of my mind every single day. I finally agreed to have one done after much thinking; even my doctor said I was the only patient who had thought the most about it. I agreed in the end as it got to the point where I was just over thinking it all and if I didn’t say yes then I would still be thinking about it!

After that I was given dates for when it could be done and I was to decide between them. Firstly I was told 29^th January which when I was told these dates was only about a week away! Or the 12^thFebruary, which was much better for me, as it meant I could get Uni things sorted before hand as well. So I booked it all for the 12 February. Mum booked the day off work so that she was able to be there with me and my best mate/house mate came to the hospital with me for support as well. Which i was glad about as it meant mum wasnt going to be alone while i was under.

After all the hassles I explained about in my blog about getting a bed, I ended up having to just go there Friday morning. That whole morning before i went in i was still trying to see if i was going to have a bed or not. While i was arranging all of that still, mum was currently on her way to Bristol to come and be with me! So between calling the hospital i was ringing mum as well and in the end i still hadnt heard anything by the time she was in bristol, so i rang her and told her to come to the house and well go from there. Soon as so as I hung up from her the hosptial rang me and told me to just come in ASAP and while i was still being operated on they would be finalizing a bed for me, I had to ring mum and tell her not to get on the bus, and lucky i caught her when i did as she was just heading for the bus to get to the house! I told her the plan and said im getting the bus to town and would meet her outside the hospital... Finally something was getting sorted!

 As soon as I was told to just go in ASAP, my nerves started getting the better of me. The shaking began, although some of that was possibly from hunger and thirst. I got to the hospital and met mum outside there and we went straight to the Queens Day Unit, where I told them who I was and such and then the nerves really started getting me. My shaking was worse, and my chest was tight, my hands went all clammy and my mouth suddenly felt like the bottom of a bird cage! All that in less than 30 seconds – scary!

I was told to sit in the waiting area and was eventually called by a nice nurse in scrubs who showed me to a small side room where I met the anethetist. He asked me some questions about any previous operations, about my CF and how my chest was that day. I explained that not having been able to drink I hadn’t done my nebs so had not cleared anything that day. He wrote this and some other info down and then made my nerves even more worse by telling me I was going to have a tube down my throat for interbation!!

I had been wondering this, but as it was only a minor operation I assumed it wouldn’t be something that would be used. Apparently I was wrong. I asked if I was going to be awake when he put the tube in my throat and he assured me I would be asleep by then, but I might be coming round when they took it out. This I didn’t like either. And to hear I was to have a sore throat afterwards as well was not the best news as I hate them.

So he left and I was left being asked questions by the nurse who had shown me in to the side room. She got me to fill in some more questions and sign consent forms. Took my obs aswell, and my blood pressure was quite high as was my pulse. She put it down to nerves but wrote it down just in case.

Then physio came and saw me and talked about the procedure with me a bit and she took my pulse as well, which turnt out to be 112!! So pretty fast and she could see I was extremely scared. I felt a bit silly for being that scared but I was and looking back, still think I was, well within my rights to be that scared.  After seeing the physio I was shown where to get changed into my sexy gown and stockings to stop deep vein thrombosis and something else that had a big word. I wasn’t exactly listening to anything but the blood rushing around me. I got changed and then went to the waiting room where I was able to tell mum and Emily some things I could remember, before the surgeon called me into another small room where he told me how the procedure was done. This kind of helped calm me and didn’t help calm at the same time. At least it assured me of one thing – that he sounded like he knew what he was doing! He told me ill be fine and that my port would be accessed in surgery before I come out as I was going onto IVs afterwards.

I went back to the waiting room, then no sooner had my arse touched the seat was I called to go to theatre. I hadn’t realised I was actually having to walk there myself! I prayed my legs would carry me and not collapse with the jelly like state they felt like they were in.

I walked through the double doors into the theatre room, and saw everyone in scrubs and gowns and such and that’s when my freaking out hit the roof and went through it! I don’t remember much from that point as it all kinda went in slow motion. I was told to lay down on the bed after being asked for the fifthteenth millionth time that day if I was pregnant! I layed down and coz I was shaking so much (like a leaf blowing in a very severe gale force wind) I was covered with about 3 or 4 blankets. Then I had these little “electrode” pads put on my lower back and two on my back at the top, they were then connected so I could be monitored properly. I then had my cannuler put in, by this time I was in total tears and was rubbing my streams away with a hand full of gauze someone had given me, and for once didnt even realise they had put the cannuler in at all!

I had the anaesthetic given to me via the cannuler, which was really cold! Made my whole right arm feel like it had been plunged into ice water. I think it was to help me relax as well. I started to go really dizzy and I said about it, and they said its fine, im meant to be feeling like that, and its totally normal. Next thing I see is the mask coming towards me, and I start feeling like I couldn’t breath, I realise I was starting to really really panic then, and there wasn’t anything I could do. I was petrified to put it bluntly.

Someone told me to breath steadily and deeply and to try and stay calm – easier said than done when they aren’t the ones shitting themselves!! I must have managed it anyway as I remember the mask coming half over my mouth and then after a few mins it was totally over my mouth and I don’t remember anything after that until I woke up.

Waking up after op and recovery:

I remember suddenly being aware of people talking and machines beeping around me. Then I could feel a tightening on my left arm at the top, and then it would loosen. I wasn't totally sure what it was at first. I think I went back to sleep again, as I then remember opening my eyes briefly and seeing a bunch of nurses in the corner and I couldn’t keep my eyes open so I went to sleep again. I woke up again and realised the tightening and loosening on my arm was blood pressure machine, and I could feel the finger thingy to measure my stats on my right hand. I could feel a mask around my mouth, and my first thought was that my mouth and throat were as dry as a desert!! Never had my mouth been so dry and sore. I think the anaesthetist person must have seen my eyes open as she came over, I don’t member what she said, I know I asked for a drink, and she gave me some water. It’s the only time I think water will ever taste like heaven! She switched the machines off and took all the things off me. I was still really bleary and groggy and just about managed to hold my cup of water properly! Once I was a bit more alert the porters came and moved me to another part of recovery, where I know I asked for mum.

Still being all bleary and not being about to see more so as I didn’t have my glasses on (mum had them with her) I didn’t actually recognise mum walking down the corridor towards me. All I remember seeing and thinking was that’s one worried looking lady walking towards me! When she got closer I realised it was mum, and she held my hand while I drank and spoke a little bit, I was still really groggy so wasn’t able to say much, that and my throat was sooo sore! I'm not sure but I think I may have fallen back to sleep again while mum was there…

Eventually my doctor came to see me and my dietician to arrange snacks to be sent up for me to the ward. I don’t really recall much of what was said by my doctor and I don’t think hes expecting me to remember much either haha!

Emily (the best friend/housemate) came to my bed as well after a while, and me, mum and Emily was sat in the recovery area for a few hours until I was finally taken up to the ward 10. Mum and Emily met us up there and I was taken to my room. This was the tricky part. I had to get up from the bed that I was in and get into my new cleaner one…. Not having stood up for some hours and still being very groggy this proved to be a small challenge for me.

As my knees were killing me with pain from not having been moved for a long time, I was eager to stand up and not at the same time. Only in my eagerness to stand I nearly exposed myself haha! Thankfully the porter helped me to no do that and helped me to the new bed where I was sat. The numbness had started to wear off and the feeling of being punched in the chest was starting to make it self known - where the port had been inserted.

As the evening went on, mum left to get the train home, and physio came to see me, which is when Emily left as well. Having had a general anaesthetic my chest had been shaken up a lot and was really manky from being so still for so long. So this meant things were very very hard to shift and my cough was very rough and harsh. It wasn’t easy at all, as coughing hurt my already raging sore throat (from being interbated) and made my port area really hurt. But I managed to get something shifted with a hyper tonic saline neb with physio. She was very happy and gave me some tips of supporting my port area when coughing, and gave me a nice towel to put over to apply some pressure when coughing.  We stopped after I did two nebs, and she told me to rest and just do the nebs some more when I was feeling more up to it. I did some more later that evening and again in the morning.

I was given some pain killers – codeine and paracetamols that night aswell and they worked a charm for helping to deal with the pain. Didn’t get rid of it totally but helped manage it enough that I was able to be comforatable. If the pain was still too bad then I was allowed tramadol aswell if I wanted it. I didn’t sleep much at all that night though. I slept for an hour or two and then woke up every hour on the hour, as the pain killers had worn off, and the side my port is in on my chest is usually the side that I sleep on, and as I couldn’t lay on it, I wasn’t able to get to sleep properly on my back.

So that was my blog I wrote on a word doc the day after my operation. While I was writing that I remember feeling all the butterflies in my stomach again, and it was then that I think it hit me that I'd had an operation and it was all over now! I dont really care if anyone reading this thinks im being a dramatic as it was only a minor operation and nothing really compared to some operations that happen for people for various reasons. But it was a huge deal for me, considering that when I was younger I always said to myself that I would never have surgery... in hindsight a silly thing to say to myself when I have CF, but then I was young, I didnt understand what could be to come as I got older. I think i only said that to myself as i used to hate my scar ive got from my operation from when i was a baby on my blocked intestines. This was another reason i was so scared about my port op, as id not had one since i was born and clearly dont remember that!

Now I know how the procedure goes I dont think I'll be as scared about having it done for when the time comes to have my port changed.

Who knows the next time I have an operation could be to take my port out for good, as a cure has been found for CFers! I can only dream until that day arrives...