Port Operation

So im going into hospital tomorrow as im having my first port fitted on Friday.
Im going on IVs afterwards and my meds are being changed so im staying in hospital for a while. But thats okay, as ive got my friends supplying me with DVDs :D

Im pretty nervous about my op. Ive been getting really pissed off with people as ive been worrying about im scared about it, and people think that im being silly. I know its only a minor operation and such, but its still an operation!! The only one ive ever had was when i was a baby and i obviously dont remember that!

So im just going to keep feeling whatever i want and if people dont like it tough shit. They arent the ones in my shoes after all really, and so really havnt got a single clue while they go along with their happy healthy lives.

To be honest it might be nice to be in hospital for a while anyway, things have been a bit tense and stressy at the house im living in with friends and a few arguments have taken place. Mainly between me and other people, but if they actually took the time to listen to me and things then maybe arguing wouldnt happen. Im one of these people who will voice my opinion and thoughts about you whether you like it or not. Up to you to listen to me about them really. As long as i say my peace and theyve got nothing to say back to me, i leave it at that. I know some people have been talking about me behind my back, and behind closed doors, and i think personally that thats just cowardly! If people have something to say then say it to my face and at least give me the opportunity to explain and things, not just draw their own conclusions, as they really have no idea whats going on in my head!

But lately my moods have not been the best, and they really havnt been the best time to piss me off with petty things. So its not my fault for standing up to people and standing my ground. Wether i have to do that yelling or not i dont really care either way. People learn eventually that when im in that mood, you dont come near me, unless you want to loose your head.

So ive got plenty of films to watch and im taking some coursework in aswell so ill be kept pretty busy as i get sooo bored in hospital.

I also dont get internet in there and ive not got a dongle thing so i cant supply my own. So im going to write any blogs that i would do normally in a word doc and then copy and paste them in when i get internet back again, which will be when i come home.

Write again soon
xx

plain pissed off

I had a cold and its just suddenly come on one morning i woke feeling like id been run over and reversed on by a steam roller. I was so tired and fed up. When i was little and living with my mum, dad and sister if they all got a cold i would always some how manage to avoid it and be totally fine. I was always boasting about that i never got colds when i was younger. It lasted through most of seniors aswell up until about year 10/11. I think it changed coz of A. i was getting older and CF hates when you get older apparently and B. i was always wearing myself out studying for my GCSE's. After that it seemed okay and i went back to my normal cold skipping self.
Now a few years on i seem to constantly get colds no matter how warm i keep myself when out in winter and ive pretty much constantly got the heating on at home and then at uni, not that the uni house keeps the warmth very well. Im sometimes glad for a slight temperature living here just so i can get some warmth in me! Which is of course bad.

Like i said ive got/had a cold now and its left my sinus' and my head doesnt feel like its at sea anymore. But everything has migrated down onto my chest. Before when this has happened its lasted a few days maybe a week and then its not so bad.

This time i swear its out to land me in hospital! Im wheezing for the first time in absolute years and its seriously pissing me off!! I feel so out of breath just walking up the stairs to my room or to the bus stop. When i go outside my lungs ache soooo much coz im breathing in sudden cold air, and it just hurts. If im not with anyone i put my head phones on and go to another world. I like my other world im healthy and things are so much better than life in reality. I know my life isnt like total shit, but it seriously has its moments, and when it rains, it pours for me :| Any problems just all seem to come at once.
A good example would be the next few weeks. Ive got clinic today to sort me out before my port op as they need my chest to be as clear as possible - fat chance that happening when theres an elephant sat on it! - and then ive got my annual review on the 8th feb, then im admitted on the 11th Feb and have my op done on the morning of the 12th feb. Past that im unsure of whats happening, but i am so certain im going to be on IVs after my ports in. On top of all the hospital time and physio time at home i still need to attend lectures, and get all my assignment done. I have 6 modules and ive now got an assignment for each one, all due before Easter! God knows how im going to manage. I can speak to the disability people but they have changed all the rules and apparently last time i went onto IVs i wasnt entitled to exten circs and so my assignment was pretty shit when i handed it in. So im not going to be shocked if they say that im not entitled to them again. Which is bull shit as they changed it and still let the people with on going conditions be entitled to them. Depending what happens today i might speak to them. Even though it always seems such effort for them to pull their fingers out theirs arses.

Better go get ready for clinic, ill blog about that later.

Port, and dreams

At the end of my blog post yesterday i said i would write another one about my port stuff thats happening at the moment...

It took me ages to actually agree to have one put in, mainly because its an operation. I know its a minor operation but still ive not had one since i was born and clearly dont remember that! All ive got is the scars to remember it by. So it was a very big decision to make for me about having a port, and also weigh up the pros and cons of ports aswell. Eventually i said yeah and now my operation for it is booked for the 12th February.

Im admitted the day before and then go down about 10/11am on friday morning. Im still pretty scared about it, but im hoping that once i meet the surgeon and anethetist then i will feel a bit better, i mean they must deal with nervous people everyday right?!?

Im glad ive made the decision to go ahead with it,  but i guess i wont know the full extent of my decision until its done and in really...

I think another reason it took me so long to think about it, is because it proves my CF has taken that "step down" i guess. Its come to the point where my viens have decided they arent going to have any more lines put in them and so ive to have a port put in. I never really thought i would ever be one of the people who have a port. But then i always thought id be healthy no matter my CF. Guess im still nieve after all when it comes to it....

I had a dream last night about my operation, and it was quite detailed, you know like when you get them kind of dreams. Its freaky 'coz when you wake up you think its real! Its wasnt a bad dream but i dont think it was a good dream either. It was good because it all went smoothly and such, but it was bad as when i was taken back to my room there wasnt anyone there, and i hated the port and the fact that it shows like a bump under the skin. I was really upset in this dream about no one being there when i got back to my room, but i was also upset more so because i hated the port and wanted it out.

I woke up properly and felt at my chest where it was in my dream and realised it wasnt real. My first thought when i woke up was dread and also that i shouldnt be lying on my front as ill damage the port! haha i think ill still be able to lie on my front - i hope so its the most comfiest for me! But the dread in my dream about not likeing it has stuck with me and i cant stop thinking what if i dont like it, can i just get them to take it out? But then wont that mean i cant get IVs again, surely thats kind of a good thing but not as they are a good strong way to blast infections and if i cant have them ill get really ill and deline really fast....

So now i cant switch my head off about whether ill like it or not. Ive been warned about it showing more or not depending on my weight, but in my dream it was really prominent.... surely it wont be that bad??....

The no one was there part bothers me aswell as my best mate Emily and my mum are meant to be there when i come back to the ward. The thing thats pissing me off about it is that my sister wants to come down for it with her husband! Which dont get me wrong thats sweet and such but its just a minor operation and shes insisting on being there for when i wake up! As selfish as this sounds I dont want her there at all! I dont want to be selfish but like i said its just a minor operation and everyones making it out like its a life or death thing for me! If i was on the transplant list and getting new lungs then fair enough come down and see me as they are very risky operations... but im no where near being in that "stage" yet. I hope i never am really.

So its just annoying me that she wants to come down for it, especially when ive been told that i COULD be out the same day i have it done! She just invites herself to stay at mums and that pisses mum off, as if i was going to be in on the saturday still then i think she was planning to come and see me again. But with my sister there we cant spend that time together as she gets really bored really easily and hospitals arent her thing. Well they arent anyones thing but when you spend as much time at the hospital as I do compared to my sister which is never you get used to it really.

I cant tell her i dont want her there as shell get in a right mood and get offended (she gets that easily its really annoying trying to give her advice or constructive critisism) so for now im just trying to hint that she doesnt need to come up at all, and that mum and emily will be fine there for me as thats all i want. Most of my family dont know im having it done as then it will be mass panic to come and see thinking they will never see me again.

I wish my family took the time to understand CF some more, being the only person in the family with it, its gets a bit lonely and annoying when they know im having a bad day or week and they dont actually understand what that entails, they just think that ill be perfectly fine after a bit of rest. Which isnt always the case... But i think that if someone else was suddenly diagnosed with CF in my family, then id be a bit jealous as i know that if it was one of my aunts kids they would have attention lavished on them left right and center. They would be so spoilt and constantly worried about, and that would just plain piss me off, and my mum would literally boil over with rage it think! Shes done soooo much to help me and still does, from when i was born to present day. My family dont actually get that or dont want to get that im not sure. They didnt see the crap and hard work she had to put up with while raising me - an unhealthy baby and my sister a really moody child (apparently - not a lots changed!) and havin to put up with my dad who didnt give to flying fucks about me. My sister was "daddys little girl" though....

Anyway.

Im off to watch Grey Anatomy, which i should really stop watching with my port coming up!!

Rant

So it seems im not the only one who is feeling pretty rubbish right now. I was told at my last hospital appointment that im stuck with Cepacia for good. grand. and they tried to put my on some oral antibiotics as i was so sick and in pain from my IVs that i made them take the line out, and i went onto something called co-trimoxazole(sp?) and after a few days had to come off them! They felt like they were working aswell for my chest and apparently they are meant to be really good against Cepacia. But my body didnt seem to like them and i got the side affects of a rash on my head which was itchey if i did anything so washing my hair became a real pain in the arse (more so anyway as i cant seem to take a shower lately without having a coughing fit :| ) and my bones and muscles were sooo painful some nights i could barely move! I was takin Ibuprofen all the time (within the required dose) and also using this nurofen muscle rub which seemed to help some before i went to sleep. That went on for about a week and was really horrible as it was during all that snow aswell so it was uber cold to go out and try and move about and get fresh air, as i get the cold in my joints easily as it is!
So ive been trying really hard to keep up with physio and get some weight back on me, and i was doing really well and felt liked id put weight on and now im back at uni and i dont have the time to eat like i did at home - or the money all the time, and apparently im not entitled to any benefits unless i get a job thats 16+hours then i can claim working tax credits i think it is, and im on low rate DLA.With uni i havnt got the time to work 6 hours let alone 16+hours! I spend too much time trying to keep on top of my work load, do my physio, eat, and understand what the hell im doing on this course without freaking out too much!

Now ive got a cold :( and i feel like im at deaths door like anyone does with a cold. My chest is really shit and i cant even walk from the bus stop at uni to my lecture room without getting well out of breathe and tired. All my friends keep asking me whats wrong and ive told them thousands of times its coz i cant breathe like they can basically so im guna feel like shit even when i slap a smile on my face and pretend im funky dorey, but they dont seem to listen and so keep asking me thus me getting annoyed with them and shutting myself in my room for hours just to try and get some peace.

Which doesnt always happen as theres a friend of mine back home who is constantly ringing/texting me and he just does nothing but piss me off lately. I told him yesterday ive got a horrid cold and before i said that he was fine and then as soon as i said that he was all like "oh yeah ive been feeling a bit rough today, ill see how i am in the morning if i go to work or not" He barely works and when he does its the bare minimum he can get away with! He has asthma so i get that his chest is going to feel crap sometimes aswell, but to be perfectly honest he gets no sympathy from me when he says that as he smokes like a chimney so hes causing himself his own rod for his back....

Ive literally just started term for uni yesterday and already feel like im drowning as ive been reminded over and over about sorting out a placement and if i dont know if i want to do one yet i cant really sort anything out. Ive also got notices going up about coursework being set soon and i just feel out my depth already.

At least my port operation is set for the 12th Feb. Some members of my family are annoying me already about that. But thats for another blog. Ive ranted enough for now.

New Year, New Me....

So this is better late than never for my first new year post :)

This year will be all about a new me. Now I know people say this all the time "this year I'm changing, I'm going to be a better person than last year blah blah". Well I truly mean this, and Ive decided that if I dont keep this promise to myself then I am not allowed any more tattoos! Now people who know me quite well know that I adore tattoos! I've got 5 at the moment, and I'm getting my 6th one done in a few months time. I'll get back to this in a bit...

So this new me will include:
1. Not feeling guilty if I feel the need to take a day off and rest, "re-boot" my energy levels so to speak so that I can survive the rest of the week at Uni!
2. It will be about me making sure I really eat properly while I am at Uni. Mums fattening me up some while I'm home for christmas, so I dont want to undo all her hard work and effort of delishious meals in one week alone at Uni. I know I'll have some friends who will kick me up the arse with things.
3. Physio! This is something I detest. I always have. When I was at GOSH when I was younger, I swear my physio nurses hated when I had an appointment, as it would always be the same answers "Have you done any physio at all since we last spoke?" me: "Nope, I dont like it. I dont like doing things I dont enjoy" Physio "Its in your best interest to do some, other wise things won't be easy for you in the long run" This all totally fell on someone who was away with the fairies. Now I've grown up and matured (a tiny bit anyway :p ) I realise how important it is to keep a daily routine of things, like my physio and keeping on taking all them pills (I am really surprised I dont rattle when I walk!) I am getting a bit better, I've been trying to do my DNAse and my Mucoclear (this ones still really new to me, and MY GOD! does it dry your throat out!! Although it does work really well) nearly every other day at the moment, every other day mainly for the Mucoclear until im used to it better, and my DNAse, well I was doing well with doing it every day, but, well, its seemed to have stopped! So that will be picking up. I will be trying to do some chest purcussions aswell, maybe if I'm feeling particulary chesty some days. I used to hate this also when I was younger and found it embarasing.... although I still do, I don't know why, perhaps its the loud coughing because of it all and the stuff I bring up (eventually) I dont like it in front of people, its still bad enough when I'm in hospital and I've got to do my Nebs, I hate doing them in front of people. Theres only two people I dont mind doing them in front of and thats my mum, and my best mate Emily. It takes me a long time to build up trust with people, when I moved to my adult care unit in Bristol, I was not telling the doctors there much until I asscessed what they were like in my eyes. It's very bad I know, but its a trust thing for me. They after all effectively holding my life in their hands, therefore an element of trust has to be found. I'm better with some of them now though :)

4. Organisation!! This is a major one for me! I am sooo bad when it comes to doing things on time, or when I am supposed to do them. I will be (hopefully) having a mentor set up who will help me with this at University. They will help me to create time tables for coursework, revision when exams roll around, other things aswell, making sure I'm on top of my work load and not stressed, and making sure I'm getting all the help I am entitled too. I have also bought myself some folders for which I will be arranging all my work from year 1 in one folder and year 2 so far in another folder, there will be dividers between each module, and it will include all my past assignments, and lecture handouts and notes. I am trying to find them tray things "in and out trays" they are called, and apparently this is the technical term for them aswell! These will obviously be my "in and out trays" for assignments, the out tray will contain one that are due to be handed in, and the in tray well thats obvious really. I'm going to create some decent sort of schedule for my physio time at University aswell...

5. Portfolio website and Placement!!
This is another major one, and my last "to do" of the year for me. I am hoping to do a placement for my third year at university, I would like it idealy to be in my home town, or near enough to get to easily, so that I am able to move home for a year. However if the best one I find is in Bristol I will have to find some sort of living arrangement there. I am sure things will fall in to place eventually, however its giving me a right headache looking for one, and then thinking about the applying process. My worst thought is what if I apply to a place that I really like and they don't accept me. That will be crushing, yet I guess looking at it from a different angle would be a good learning experience to be able to get back on the horse so to speak!
My portfolio website, I have started this. I've been working on it on and off for a few weeks now, and I've re-started it 4 times! The design I'm working on now is my 4th attempt. So far I am liking it better than my other 3 attempts! Which has got to be somewhere in the right direction... Once it is all finsihed I will purchase my webspace and go live with it, and hope that some work floats my way, or a prospective employer will see it and like me enough to hire me! Fingers and toes crossed!!

That is all my parts of me that I want to change this year. I am sure I've missed some minor details out, but everything is still in my head so I know what I am doing. But these points are the most important to me really. Going back to the tattoo thing quickly as I said I would. I am getting a port fitted this year, which if I am honest I am bricking it about. I know this is a minor operation, and I've been told that it will be under a general anesthetic (sp?) thank god!! But its a big deal to me, as its an operation, and I've always sworn to myself that I would never have one done (which in hindsight, having CF and swearing that to myself was a very bad idea, perhaps I meant operations that wern't essential). I had one done when I was a baby to sort the blockage in my intestines out, and I've got the scars from that. The scars don't bother me anymore, they used to, mainly 'coz people would ask what they were from and as I didn't know really I was shy about them, and kept them hidden. So the scar from the port op won't bother me at all, and I took a long time to think about it, longer than any patient at the hospital I go to my doctor told me, which I'm not sure is good or bad. I do have a tendancy to over think things a lot! But I decided that when I meet the surgeon and the anethetist person I will be more settled as I'm sure they deal with nervous patients all the time with their job! So I am hoping that will be in before my birthday in March (21 woop!) and I've decided that I am getting myself a tattoo after I am all healed somewhere on me (not my chest, perhaps my ankle) to represent my CF for me. I don't mind if people see it and don't understand what it is about, as this is one for me only :) I am busy in photoshop creating one that I feel is perfect :D

So to end this very long blog, I am off to bed now as I'm shattered!

Night
Kat

Fed up with all this crappyness!

I'll warn anyone reading this now, this is not a happy post, nor a christmasy one, so sorry in advance, but youve been warned...

I've been on IVs (Colomycin and Meropenem) for 2 weeks now and they've done absolutely fuck all :(
I've got Cepacia at the moment, and it doesnt seem to be budging and is putting up a very good fight against anything thats being thrown at it! Which as I'm sure some of you know or can imagine, is really really annoying and just gets you really down and makes you wonder why you bother with anything to keep healthy if its all just going to come back and bite you in the arse!

Thats exactly how I feel now. I went to the hospital today for my "end of the IVs" check up, and its not really impressive. Not how I would prefer it to be anyway. My lung function has gone down, I dont member what it was perfectly, but its not better at all. The CF team wanted me to continue on another week of IVs, but I couldnt do it :( Im far too tired and sick of everything! So we agreed I would go onto some oral antibiotics, and then go back to them next wednesday. They wanted to put me on something I've not had before (dont remember the name again sorry :S) but as they arent going to be there for a few days they didnt want to put me on something I've not had before and have no one around if any bad side effects occur, which is fair enough, so I'm on Ciprofloxacilin again to see if that helps at all. They said that it could be that my lungs are taking a bit longer to catch up with the rest of me, but I'm not so sure to be honest. As depressing as that sounds but its how I feel, and I try to be honest most of the time.

I feel like im letting myself and others around me down, mainly my mum, and 2 close friends. I also feel a bit selfish to myself if that makes sense, I was chatting with the CF nurse - Charlotte, shes brilliant, she'll listen and give her opinion and advice and wont get all uppy if you dont take it, which I love, most importantly she listens! - and I was telling her how I'm feeling and that I really just want this round to be over with now, and all that, and she gave me the talk of how they all have my best interest at heart and all that such a like. I listened, and I took into account what was said, but I was adament I wanted my line out today! Except now I'm worrying wether I did the right thing by myself. I feel selfish to myself as a large part of me just wanted to have my line out 'coz I'm so tired of doing my meds all the time, as I said before (sorry for repeating myself) and I just wanted an xmas without all that to do, and then another part of me was sat there thinking, take their advice from this lecture and continue the IVs, it could do me the world of good.... but then it might not do anything at all, in which case what to do then?!
Im just so scared that I'm heading to the point of "no return" you know? I've got to think about havin a port fitted now aswell, I asked my doctor about it on the day I went onto my IVs and he sed its a route we need to start thinking about! I was shocked, as I was only wanting information about it thats all, not to open the actual door to that route yet! I know I would eventually need one, but I didnt think it would be yet.... but they keep asking me if I've been thinking about it and its like they are pushing me for an answer so they can get the ball rolling..... which to be perfectly honest really scares me, the only major part of it that scares me is that its surgery! I know I would be asleep, well they would have to knock me out, fucked if they are coming near me with sharp things when I'm awake, wether I can feel it or not! And I know that its only like a "minor" operation, but the last operation I had was when I was born, and it was on my intestines and I don't remember anything about it obviously! But the thought of having one now scares me soooo much! But I know I'll need to get over this fear and get my port fitted soon...

I'm going to stop whinging now, as its Xmas and I'm going to try and cheer up! After all, with my line out at least I can have a bit of a drink now! :D My sister is down aswell at the moment and her husband is joining us late Xmas day :) so that will be nice.... depending on the amount I argue with my sister, but then again its not xmas until the family argue :P

My plan is to rest up for a few days and stop thinking about everything until after xmas, then sit down and chat with my mum about all thats floating about in my head at the moment. I'm also going to step my physio up a bit more, before I went to Uni, I went on the Wii alot, and that helped a bit, so I'm going to do that, and also I'm going to start doing this new nebuliser that I've got, which is Hyper-tonic Saline, I'm sure a few people I know from the forums do this aswell. Its all new to me, and I did the trial at the hospital and it really really dried my throat out, BUT I felt like it worked and my chest became very loose, so I think it will pay me to start doing that.

Merry Christmas everyone!!

xxx

Sods Law strike 2!

Continuing from my last post, I got to the hospital and they checked my arm, it was a little red and angry looking but I was quite hot so they let me cool for a few mins, and it was still a bit red. So they flushed my line, and to begin with the Saline wasnt going through, the syringe just wasnt going to budge. I even moved my arm about to see if that helped. It went through in the end, but with some force, and typical, no pain at all! No swelling either and my swelling from that morning had just about gone down. Although they couldnt work out why I was swelling where I was, as its no where near the exit of my line inside my vein.

I even had my 4pm round of drugs done and there was no pain or swelling, so they sent me home funky dorey after a good chat about ports as I now have to start thinking about getting one inserted! Scary but I was the first to bring it up, and I have done in the past and theyve been reluctant to tell me, perhaps as at the time I was quite well, now im not so well. But ive got plenty of info to read about it for now.

Ive just done my 11pm drugs and as I was having a hard time pushing my Mero through as my line doesnt seem to like 20ml syringes this time, so its tough to push and hurts my hands, my nurses have said that I can do the Mero via the pump like I do my colistin. I did all this, and to begin with first saline flush was okay, a bit achey but fine, then attached Mero syringe via the pump, and a few mins in and it was hurting again like it was this morning! This pain has continued throughout my whole meds tonight. It hasnt swelled as bad and its not in the same place which I think is good, im not totally sure. But ive got a nurse coming out to see me 2morro for my 1/2 way mark (thank god) and so ill speak with her then and see what she thinks. Its sods law it was fine at the hospital and when im home doing them the line plays up again :(

I felt a bit silly going in after all that panic as this is the first time something has ever gone wrong for me with IV's, and then I get there and things seem fine.... But still least I got it checked out and sorted.

Lots of thinking and research to do about Ports now over xmas and then its being reviewed properly in January and were going from there, but I cant see summer rolling around and me still being without a port. Which sucks as I was thinking I was doing so well, guess I spoke too soon! haha but still if its for the best, and id rather make the decision myself to have one, than it get to late for me to still be able to say no...