Past Few Weeks

I've kind of been putting this blog off as I couldn't be bothered with it but I suppose I should post an update for anyone that still reads!

I ended up on IVs again as I caught a cold which it seems is my enemy! I called the hospital and they put me on septrin at first to try stop me needing IVs, I drove to Leeds and picked up the prescription, got the tablets from the chemist. I decided to flick through the leaflet quickly before I took it as I've never taken septrin before and like to know what lovely side effects I may experience, so I know its the tablets causing it. I didn't get past the first section of the leaflet as I discovered septrin contains trimethprim which I have on my notes as been allergic to. I have a memory of vomiting in my Beauty and the Beast slippers as a child, my mother cannot recall this. I was unimpressed to say the least so called the Doctor who said 'yes I remember reading it in your notes but I forgot', wow good to know. Anyway she suggested I take one anyway and see how it went as it was a long time ago and it wasn't a serious allergic reaction. There was no vomiting so that was a bit of good news.

The septrin failed me and four days later I felt like I was at deaths door, I was getting out of breath talking, was so tired and achy and my sputum was going really thick and dark green. On the Monday I waited until our cleaner had done the bedroom and and then crawled in to bed, I was fully clothed with slippers on and was under the duvet and still shivering. I had to take Alfie to the vets as he had been walking on three legs all weekend so dragged myself out of bed and somehow made it, luckily Alfie had just pulled a muscle, that dog is a serious whimp! I decided whilst in the vets I was indeed going to die and called the hospital to tell them I was feeling very unwell so they wanted me to go in and see them. I went to my mums where I proceeded to cry as I was fed up and could not face driving to the hospital and struggling to get a car parking space and walking from the car to the ward. So my mum took me thankfully and gave me some pringles to cheer me up, my mum had only just come back from holiday so was pretty tired herself bless her!

I had a temperature of 38 degrees (I think it was 39 degrees the next day) and since I'd only had IVs two weeks before and I confessed I would struggle to do home IVs they decided to admit me in to hospital. Except they there were no beds on the CF ward and they couldn't locate me one on the respiratory ward so I had to go back home and wait for them to call me. Which they did the next day so off I went with my lightly packed suitcase (I wasn't planning on staying long). They decided I might have the flu so started me on tamiflu, they also put me in isolation so I couldn't infect anyone else. 

I went in on the Tuesday and it was my sister in laws wedding on the Saturday, so as you can imagine I was extremely unhappy at this turn of events as I'd been looking forward to it for ages and I was also supposed to be a witness. I told everyone who came in to my room that I wanted to go to this wedding and could I go on home IVs or go out for two nights? (the wedding wasn't local). It turned out I did not have the flu, just rhino virus (the common cold) and my temperature was coming down slowly so they agreed to let me go on home IVs on the Friday as I was feeling a lot better and felt I could manage. I was going crazy anyway as I wasn't allowed out of my room, even to use the ward gym and there weren't even any windows in my room to spy on people! 

The wedding was great, I didn't exactly feel like partying and had lots of treatments to fit in but I managed it and I was there which was the main thing. I went to a wedding and fitted in three lots of physio, all my nebulisers, three lots of IVs and an afternoon kip so I was quite proud of myself! The hotel had a fridge they let me use thankfully and I had to use a jug to wash my hair as the shower wouldn't lift down, all these little things people don't realise you stress about!

The rest of the week I spent hidden under a sleeping bag on the sofa watching lots of ER, then I decided a few days before I was due to finish my IVs that I should get out and about. It's sometimes difficult to tell if you feel better when you are lying around all day, especially with all the side effects from the IVs.

When I went to finish my IVs my fev1 was 45% which is the best it has been in ages so I am really happy about that! I managed to keep on my weight through having supplements so I'm practically back to normal now. The only complain I have is that I keep getting mucus in my throat especially when I lie down and I keep waking up because I can't breathe! The physio thinks this might be coming from my sinuses, so hopefully will get better as my cold goes. I also had my flu jab when I finished my IVs, the earliest my GPs could fit me in was the 31st October and it's just easier to get it done whilst at the hospital.

My glucose tolerance test says I have mild diabetes so at the moment I ma having to monitor my blood sugars before I eat and an hour and half after I've eaten. I don't know much about diabetes or what the blood sugars mean, the lowest so far is 3.2 and the highest is 17.6, I know that is higher than they should be but no idea what my fate is going to be! I hope I don't have diabetes because my fingers are already sore and it's just another thing to make eating even more complicated than it already is with these stupid enzymes! I seriously don't know how much more treatments I can fit in to my day and still have some form of a decent life! I might actually cry if they tell me I have diabetes.

Pete managed to raise £200 for doing the Great North Run which we donated to my CF Ward last week, so thanks to all those that donated!

Here are some pictures from my sister in laws wedding, we didn't get many! She looked gorgeous anyway which is easy for her since she does all the time!

Hotal St James'

Well this is going to be my home for awhile....Yes I'm in hospital! A first for this blog so I haven't done bad,I think it's almost 5 years since I as last in! I went to start my IVs on Tuesday and really wasn't feeling good, I was sick when I got home from coughing so much and just lay down for the rest of the day, I had to go back to the hospital in the evening for my second dose of Aztreonam as I haven't had it for several years and they like to check you don't have a reaction to it.

Later in the afternoon the nurse called me to say my blood results had come back and my crp was sky high at 160, its supposed to be under 10 and usually when I need IV's it's about 30-40, crp are your infection levels. She asked me if I wanted to come in to hospital or wait a few days and come in if I was no better, they had a bed for me and I could come in the next day. I decided to go in as I was feeling so rough and just wanted there to be people around to look after me so I don't have to do everything myself, I was upset though as I don't like being in hospital especially so close to Christmas when I have shopping to do and things planned! I still had to go that night for my second dose and got annoyed when some woman in the lift in a hospital for godsake decided to comment on my cough in front of everyone and told me I should have a mask on!

On Wednesday I went in to hospital, Pete managed to get some time off work to bring me in (he has just started a new job!) but he couldn't get parked as the CF spaces which are reserved for CF patients and have signs saying you need a permit were taken by people without CF, typical! Another guy with CF went up to one of the cars where a man was sat smoking in it and explained this to him and he told him he had a disabled sticker and wasn't moving! So instead of Pete being able to help me up to the ward with my bags he had to drop to me off at the entrance and go as he didn't have time to park somewhere miles away and walk over. Makes me so mad that people are so inconsiderate. So I dragged it all in myself and this time some idiot in the lift decided to ask me if I was going on holiday as it looked like it! The nurses said they would call security about the cars but I don't know if they did.

I had an xray in the afternoon, I got pushed there in a chair by a porter, I felt a right div but was glad of it as it's a long walk to Xray. There was then some problem returning me as the porter put I was completed even though I wasn't, something to do with how they had spelt my name wrong, can you believe it! So i was stuck in Xray for over 2 hours, luckily my brother has lent me his Nintendo DS and I'm addicted to Pokemon already!

My Xray revealed I have pneumonia in my left lung, its not too worrying, just explains the high infection markers. I think I did the right thing in coming in anyway and I'm already starting to feel better.

The CF ward is really good, we all have our own rooms with ensuite, fridge and kettle and we have a computer with free Internet access and a tv with blu ray dvd player that is free to use. The food has improved alot since last time I was in, it is freshly made and I get a fry up every morning! There is a patient kitchen we can use to make toast, drinks etc but I'm being barrier nursed at the minute as swabs showed I have rhino virus (common cold) so I'm not allowed in the kitchen at the moment as they don't want other patients to get it.

Wonderland

On Saturday it was Pete's birthday, he is now the same age as me again. I don't like that few months gap where I am older than him! I'd already bought Pete some clothes for our holiday back in May as part of his birthday present so he wasn't expecting anything from me, however I got him some surprise tickets to go see Jack Whitehall (a comedian) in November so think he was pleased!

On Saturday night we went to someone else's birthday party, it was fancy dress, Alice in Wonderland theme or wear a funny hat. I went as Alice as Tori lent me her outfit which is currently getting disinfected to return back to her. If you remember, Tori got a lung transplant last year in May and I don't want to give her any of my infections, so I am cleaning the outfit with Vanish oxi hygiene which claims to kill 99.9% of bacteria, it's in the washing machine as I speak after having a soak for an hour. Pete was boring and wore a hat or mine, he ended up looking like someone from N-Dubz haha!
Then on Sunday we went to the Lakes for a few days away, we are so lucky that we can go to the Lakes as many times as we like, within reason of course! Alfie can come with us and it doesn't really cost us anything. The Lakes will always hold a place in my heart, its where we got engaged!

The walk we went on, on Monday was too long, I over estimated myself and had strop half way as I was too tired and my lungs were on fire. The walk was on really rocky ground and it was so tiring, poor Alfie struggled at times and had to go in the bag for a rest at one point. Sadly I didn't fit in the bag and Pete had to give me a telling off when I refused to go any further. We turned back once we saw a hill we had to walk up, no way was I going up there, Norman let us down this time, the walk was poor and was not on the level! To finish the day off the pub we really like and was looking forward to going to, doesn't do food on Mondays (!) so we tried this other pub and the food was rubbish!
However Pete and I are not ones to be put off, so we tried another walk on the Tuesday, shorter and alot more friendly! I have learnt my lesson, my body and lungs will only allow me to do walks of 3 miles or lower on level, none rocky ground!
Needless to say I am exhausted now. I think overall I have spent more time sleeping this week than not, I've woken up at about 10am or later every day and slept in the car when travelling whenever possible! Even though walking totally tires me out, I like to go on walks as it reminds me that even though my body is poorly, I can still breathe and walk and although not as good as others, I'm alive and functioning! Feeling tired means I know I have tried my hardest and I've pushed myself, I suppose its a feeling of self satisfaction like someone who does a sponsored run, its my version...! In a way if I don't feel tired I feel like I'm lazy, it's my way of knowing I've done all I can for the day.

Pete has taken the rest of the week off work and today we have bought some plants for the garden and planted them. We bought a strawberry plant, I know it will probably die within a month as I have no idea what to do with it, but it will be fun to try..! I wore a mask when digging in the compost as I've read lots of bacteria are in there including cepacia which is a CFers worse nightmare from what I've heard, patients with this on their lungs aren't even allowed on the CF ward! So call me paranoid but I wore a mask left over from when we decorated.

Organ Donation Awareness

I just wanted to blog about an event that is happening that some people might be interested in and is being organised by some of my friends!

Three lovely ladies have organised a ball to raise awareness of organ donation, they are only here today because they all have received a double lung transplant!

Here is the flyer for the event and a link to the facebook group, sadly I can't go as I could give them an infection and the same rule applies to anyone else with CF pre transplant, however anyone else is welcome to go, so if you fancy a trip to Glasgow then get your places booked!

For the facebook group click here

One of the three lovely ladies is Victoria who received her transplant quite recently. She has also been on TV lately with her boyfriend Gregg, to raise awareness of organ donation and CF of course. Here is the link to see them, skip to part 3! They were both great!! Remember they didn't know the questions in advance and were nervous!

Dog Talk

We took the dogs to a training course on Wednesday night, it last for 7 weeks, an hour a week. It's at this place called my pet stop and they also have kennels for your dog to stay in if you want to spoil them. You can pay for them to have tv's and go to doggie day camp where they all play in a big pen together, not that Alfie would like that very much!

There were two other dogs in the class and Murphy who may I add barked at the other dogs more than Alfie which makes a change! We did basic things like sitting, sitting and staying, standing up, that kind of thing but only in short attempts. The trainer said Chihuahuas are very intelligent and can figure out quickly if you are tricking them (we did an exercise where we pointed at random stuff on the floor to get their attention, Alfie got bored after about two goes) and they won't do anything if they don't get a treat, other dogs will do it to impress you, not a chihuahua. She also said it is likely he will never get on with other dogs which disappointed me, but we can teach him to not growl etc at them. We have some homework to do for next week, I have to make him sit and stay before I let him out, give him his tea that kind of thing. To be honest he can do alot of it already, we always make him sit before he gets his tea anyway.

Alfie also went to the vets on Thursday morning. He tried to pick a fight with a massive curly haired dog just as we were going into the room. Alfie now weights 2.10kg, he has put 10 grams on the little fattie!!! Everything seems fine, his cough has gone apart from when we went to the dog training he was coughing alot but I thought perhaps it was nerves. We have to give him the prednisolone every other day now to wean him off and see if his cough returns. If it does they may need to put a camera down his throat to try locate the problem.

Went swimming today and remembered whilst swimming I had arranged to go for my port flushing at 3pm so I had to cut my swimming session short and rush around to get there in time. I feel like I haven't had my port accessed for ages, it has been 6 weeks which I suppose is the longest in awhile. When I got there, there was another cf patient at the desk and no staff around. I am never sure what to do because I feel rude keeping my distance, I hardly ever come into contact with other cf patients, the hospital staff are usually very good at ensuring this, as soon as they did see me they ushered me into a room like usual!

Visiting Hours!

I went on the cf forums the other day to find this message:

This is a message for anyone who attends the Adult CF unit in Leeds. The hospital management have announced that they plan to change visiting hours on the wards for pwCF which will now be restricted to between 2-4 pm and 6-8pm. This will inevitably have an effect on all of us who need to stay in hospital as inpatients on the wards, particularly as we are already isolated because of segregation. I plan to write a formal letter to the Hospital managers on this issue, but wanted to hear your views on this subject. Are you for or against this decision and why?

I am absolutely horrified at this proposal, who comes up with these stupid ideas?! I have never understood visiting hours as it is. I mean your in a hospital not a prison, so why should someone else dictate when you can and can't have visitors?! It's a free country and if I want my mum to come and see me I shall let her!
It is even worse for people with cf, we are segregated so have to stay in our rooms all the time and talk to no other patients. We even have bathrooms in our rooms now so there is no excuse to leave your room apart from popping into the kitchen (they will probably take that away from us next!). We nearly always have to stay in for 2 weeks or longer, its not a short, few day stay, once in your life kind of hospital stay, hospitals are our second home! Some people go in regularly, some people spend most of their time in there. Cf is never ending so our friends and family can't be taking afternoons off work etc to come and see us in our 'designated' visiting slots as they would be taking time off work for the rest of their life! It's not like our hospital stays are one offs! Some people live over an hour away from the hospital, so how are their family and friends supposed to finish work and get over in time? What about your parents/partners giving you support on ward rounds when you feel ill and too tired to question the doctors or need something doing because the nurses keep forgetting? How about getting help to get dressed and washed from family members and them bringing you in foods to keep you going which is very important in people with cf so they don't lose weight. It is just a ridiculous proposal and a very good reason for people to refuse to go in as an inpatient, I don't know what the cf staff's thoughts are on this but I can't believe they would support this. It's not even like people with cf get loads of visitors as the novelty wears off gradually over the years. Cf is bad enough, we don't need to be treated like a prisoner when we are feeling at our lowest! We were better off when we were at Seacroft hospital with our drafty rooms, as at least no-one interfered there!

Do other people have visiting hours on their cf wards?

Hospital memories

I am still not sleeping very well and still having very vivid, active dreams nearly every night that I can clearly remember. These dreams are weird as I am always in them and usually I am watching my dreams, the dreams are never very nice but I wouldn't call them nightmares as they don't scare me. When I wake up on a morning my eyes are puffy but not as bad as before, and even after 12 hours sleeping I still feel tired, drained, gunked up and generally feel like crap! I dunno maybe I am sleeping too much, although I've been setting my alarm to get up by 8.30-9am and it hasn't helped. The only explanation I can think of is the voriconazole is messing with my head, I've looked at the side effects and don't think I can see anything about sleeping problems. It's so strange because I am usually quite a good sleeper (apart from getting up to go to the toilet like 5 times during the night). My dreams are clearly been influenced by what I do during the day as last night I dreamt about being Henry the 8th's wife and guess what? I had watched the Tudors on Sunday and abit on Monday. Jo by the way, found me the 1st episode of the new series which isn't even supposed to be out yet! So I officially love Jo!!!! In the dream Johnathan Rhys Myers was not Henry the 8th which is abit disappointing, that would have been a nice dream....! No my dreams have to be historically correct and Henry was ginger and fat!

So I couldn't get to sleep last night and was thinking about random stuff like you do, and I was thinking that I think my memory is quite rubbish, like things from my childhood etc. So I decided to think about all my memories from been in hospital (I clearly was not going to sleep!) as this seems to be the biggest gap in my memory which is quite strange. Actually I discovered I can remember quite alot! As you will see, cross infection rules were pretty non existent! (wcf means they had/have cf). Here I go:

-Watching Daniel (wcf) getting his port flushed to see what is was like
-Someone telling me someone had stood on their line and pulled their port needle out and I asked if it hurt (I didn't have a port at the time) and the person was like 'well yeah duh!'
-Getting my first port - drawing an x on my chest where is was going to go and they kept cancelling the operation date (I did finally get it although can't remember this)
- Been in the bath whilst someone (my mother and nurse I think) pulled the dressing off my stitches on my stomach from having my gastrostemy put in and me not enjoying it
- Playing on the mega drive with Nikki (wcf, rip) on Sonic 2 and she always kicked my arse. I had to sit in the door to my room and she in hers with the mega drive in the middle (their attempts at preventing cross infection...)
- Clare (wcf) asking Daniel out for me, he even came to my house to play Lego you know!
- The nurse telling my mum and I that Clare had died during the night and my mum crying and I laughed for some reason and got told off (I dunno why I laughed, I guess I found it weird I had seen her the day before and she seemed OK to me)
- Weird, fat, pervy boy with asthma spying on me through the curtains when I was in a bay room and when I told him I didn't like him anymore he told the nurse I was bullying him and I got told off!!
- Someone chucking calogen across the room (Shelly, wcf maybe?) and getting it all over my simba lion cub!!!
- Thinking I was so cool cos I had TWO drips and my feed drip so I had 3 in total
- A little girl who lived in hospital called Charlotte I think, she lived in the third single room from the nurses desk, she died when she was about 3 and I thought that room would be cursed and never wanted to stay in it.
- The ward had some pet fish that we were allowed to feed and you had to mark a piece of paper when they had been fed so they didn't get overfed
- That stupid treatment room with the bloody train painted on the roof and my mother getting me to count the stupid wheels every time they tried to put a line/needle in me! It did not distract me!
- My port blocking and them putting 2 needles in at the same time to try unblock it (it didn't work). I ran away and hid in the toilets when they suggested putting another needle in!
-I remember when they put your line in, you had to ensure they attached you to the drip by putting the tubing under your top, otherwise when you came to take it off that night they had to detach all the tubing from the drip to get your top free. I have no idea why they didn't just stop the drip for a minute and unscrew it somewhere to get the top free. I don't even know why they insisted attaching you to the drip all the time to have 10mls of saline pumped into you per hour! I know it was 10 mls cos I learnt to do it myself when it beeped.
- Been in a bay room and the baby next to me crying constantly and I couldn't sleep. So I rang my parents during the night off the pay phone in tears and my dad drove over and sat with me until I fell asleep. Bless!
- The earliest memory I have of hospitals is before I even went to St James and I was at Pinderfields hospital and I was playing in a sandpit, I don't know if I have even made this memory up! Sand pit, in a hospital..??!!

So as I discovered I can remember quite abit, but they are only snippets of things. It helped me get to sleep anyway!

Get a Life

I'm annoyed.

I'm starting to do stuff to arrange my hen night and I was thinking how cool would it be if I could invite my friends with cf? Obviously this is never going to happen because if we all met up that would be one day of sharing and not sharing in a good way, but sharing of our nasty bugs! So this has annoyed me that I have made these great friends but I will never get to meet them, maybe one day we will all have had transplants and then maybe we can meet up? I dunno if even that's allowed! Probably not because it is all is so unfair. I think people with cf would definitely not want to come near me at the moment, I am coughing so much, it's so annoying and I'm very breathless when exercising. Had to cut my gym session short yesterday. I have diagnosed the problem myself.... I have cystic fibrosis (hehe). No, I think it's definitely my aspergillus and sceposporium (fungus' on my lungs) again, it's the same as before I was put on the voriconazole to help treat it.

Anyway back to me been annoyed... what annoys me even more is that because I cannot meet up with these people face to face, people do not class them as my proper friends. I spend alot of time on my computer chatting to these people and because I don't actually 'know' them, I need to get a life according to Dr N*bhead (no I'm afraid that's not his real name) and I should spend time with real friends. http://news.uk.msn.com/uk/article.aspx?cp-documentid=14366039&ocid=today

Well I have some news for your Dr N*bhead, not all of us have enough energy to go out all the time, go to work to socialise and not all of us can meet up with our friends. So maybe you should do abit of research and see things from other peoples perspective before you go mouthing off and saying people need to get a life! These are my real friends that sadly I will probably never get to meet, and if it wasn't for facebook I would either not have them as friends or have a very big telephone bill!

Here is a little preview of one of my invites for my hen night so that you ladies who cannot come can appreciate it! :o) Names have been deleted for security purposes ;o)

Survivors

Last night I watched survivors on the BBC with Max Beesley in, who is rather fit if I might say so...!

I love watching programmes like this where everyone dies or turns into Zombies etc and survivors are left all alone. It makes you think 'what would I do?' etc and makes you realise how much humans need other human company as straight away my thoughts are always, they need to find other survivors! I think humans would find it very hard to survive alone especially emotionally, If it was me I would think, what's the point in surviving if I'm all alone for the rest of my life? Its funny because I remember in one of my psychology lectures the lecturer pointed out that if a human was locked in a room for the rest of their life with everything they needed to survive i.e. food, clean water they would go crazy from loneliness (well there may be a few people who would enjoy it very much but not many) whereas if lots of people were put in a room together with everything they needed, they would also go crazy from the lack of privacy, freedom, space and alone time. Humans are funny things really.

The second thing to consider once you had found other humans would be how you were going to actually survive. There are the basics such as clean water, food, warmth, defences if zombies are trying to kill you... but also from other people. This is the other mystery of humans, if a disaster struck and it was a happy American film, everyone would help each other and sacrifice their own lives to save another. In reality people would attack each other, rape each other and do anything to save themselves, perhaps even kill one another (see the film 28 days later to see this in action). This is also known as survival of the fittest. You would think that because humans are intelligent that they would be able to think beyond this and work together to survive but I don't think they would. Look at the hurricane that was in America the other year (I don't know it's name or what year it was), but people were staying in town halls etc because their homes had been destroyed and they were robbing one another and raping women and girls. I remember hearing it on the news and been disgusted that humans could do that to one another in a crisis.

Even getting clean water and food would be a difficult or lighting a fire. Yes you can get stuff from supermarkets but this would run out eventually, I don't know how to make a fire without a match or grow vegetables etc. I would be totally useless!

Then of course there is the issue of my cf, I mean if I did survive then I'd be pretty screwed. Without anyone making my medication I need and no doctors around I don't think I'd be feeling very positive! I could get things from a chemist but to be fair they have to order most of my stuff in anyway! Where does it come from? some magical drugs supplying place. Even if I managed to get it, stuff expires, stuff needs refrigerating, somehow I don't think I'd be able to have iv's lol.

I have this theory that people have cf to protect them from some future plague, there are theories that the cf gene was developed to protect people against cholera, typhoid, tuberculosis. (http://en.wikipedia.org/wiki/Cystic_fibrosis#Theories_about_the_prevalence_of_CF)

So here's my idea: everyone dies from a plague or turns into zombies (take your pick) apart from people with cf, perhaps cf carriers too, although I'm not sure about that part. We have to keep human life going, oh dear... We will be lucky if we live long enough to fulfill our destiny, we get out of breath easily (not good if your running away from zombies or trying to build a house or something) most males with cf are infertile and most females without medication probably wouldn't be healthy enough to reproduce, if they managed to get pregnant in the first place. Plus we can't go near each other because of cross infection..... In this case evolution would suck.

Anyway like I say, these programmes/films get me thinking, far, far too much.....I'm sorry that the end result is you reading my waffle and wasting your day :o)

Here's a picture of Will Smith playing Chinese whispers with a zombie, if I was the last person on earth with Will Smith I think i'd feel abit better... :o) xxx

Good, no GREAT news!!

Well clinic was an interesting one today, when I got there it seemed very busy and I was asked if I could go wait in my car as there were no rooms for me to sit in! So I was sat in my car and luckily I was sat right outside the entrance so i could see all the people coming and going. I was trying to identify who looked like they could be a cf patient or not to see who was leaving and going in. I identified people with cf were people a) on their own b) very skinny c) quite short d) coughing. The other outpatients clinic there is mainly for old people it seems so if it was a young person with an old person, i decided they did not have cf unless they looked cfish. Anyway this was an interesting game to play for the first half an hour, then I got bored. Here is my angry face

Eventually after an hour (yes an hour!) the nurse came out and told me I was next in line and after 5 minutes she came to get me. I then sat in reception for about 15 minutes (alone as only one cfer can sit in reception at a time) then I finally got a room to sit in. Anyway, this is more evidence that cross infection sucks!

Got my weight done which was 56.8kg and the oximeter which was 98%. I saw the dietitian, she didn't really have much to say since I'm perfect and am never underweight... :o). I then saw the physio to do my lung function. So I did it and he says 'I'm just going to check the machine cos it says your getting 51% which is very high for you'. I'm like 'ohhhh ok' with a big smile on my face. So he checks it and I do it again and I get 52%!! And the machine is definitely not broken! Whoope!! My lung function has gone up by 10% in a month!! This is like the highest it's been in like forever. The doctor was very impressed and asked me what my secret was and I told him I had been doing my physio twice a day and been going to the gym and he says it just shows how much of a difference it makes. I'm staying on the voriconazole for another 2 months as that is probably helping too. I can't believe it, I was hoping it was maybe 45%, but 52% is amazing! I feel like I can now achieve 60%, I'm so so happy, I can't stop smiling!!! It's so good because I've done it myself, not through iv's and stuff, ok the voriconazole has helped but I think alot of it is in my control and it's so good to know. Heres goodbye to crappy 2008 and all my iv's and low lung function and hello to 2009 which is going to be great, I'm going to make sure of it!

The doctors only concern is the pains in my chest I keep getting as I keep getting them on a daily basis but they are not too bad and don't really bother me. He says if I keep getting them to call him before my next appointment as that's not until January ,and I'll have an xray and maybe a ct scan if needed.

Mysterious auburn haired girl

I had a dream last night that I met up with a girl who had cf, this girl isn't anyone I know, all I remember is she had really long auburn hair and was very pretty. She was quite famous in my dream and I went to see her talk about getting a lung transplant, in my dream I just ran up to her and hugged her and started crying. She was really nice to me and knew I had cf without even asking and took me for a coffee. I don't remember what in the dream we talked about but all I know is I woke up extremely happy and content and wanted to fall back asleep and spend some more time with this girl. Its the happiest dream I have had in awhile, my dreams are usually stressful or scary, I don't have many nice ones. I couldn't understand why this dream made me so happy this morning but i've been thinking about it as I believe dreams are quite powerful.

I guess its because in my dream I was speaking to someone who completely understood me. This is stupid, even other people with cf don't totally understand me or know everything i'm feeling. I'm sure they will have more of an idea than non-cf people but still ,they are not me.

This is another thing I hate about cf. Because of cross infection, we are not allowed to be near each other. This means in hospital i'm very lucky if I even get a glimpse of another patient, even when an inpatient on the ward. The hospital are very strict and I know it is for our own good. Obviously out of hospital we can do as we please and if we want to meet up with someone with cf, we can do, its a free country. However we know that we can give infections to one another, some people are willing to do this, others are not. I am not, I have aways felt that if the hospital spends so much money and time making sure we don't come into contact, theres a good reason behind it. However, this makes having cf a very lonely place to be.

Most people who have an illness, will go to support groups, meet up with other people who have their condition. We can't do that. Yes we can talk online, we have the cf forum which is great, we could even talk on the phone, whatever: its not the same as sitting down with someone like friends do, going out together, visiting each other in hospital, going to the cinema etc.

This is what makes cf even worse, its lonely and until a few years ago when my cf didnt play a big part it didnt bother me. But now cf seems to affect everything and im turning into somekind of computer nerd spending all my time on my laptop cos its the only place I can talk to people about cf, cos they also have cf. I sometimes think I should cut myself off from the cf forum and spend more time with 'normal' people, but they talk about things that I can't relate to or am not interested in. Things that are important in my life are medications, physio, coughing etc, its sad but true!! Yes there are other things as I illustrate in my blog but cf is a major part in my life and I can't ignore it! it's a part of me and kind of dominates my life and what I do in a way. I'm not trying to be negative about my cf here, i'm trying to be honest. And it would be nice to be able to have friends (real ones not cyber ones) that I can be myself with and talk about things that matter to me. My friends try to understand but I feel like i'm giving them a lesson rather than discussing things with them, plus I don't want them to feel i'm moaning or seeking attention. I'm not saying if I had cf friends we would talk about cf all the time, god that would be depressing, but maybe we would see things in life the same, prioritise the same things, be able to appreciate things together that maybe others don't and know each others limits. But sadly this won't happen and I think that is why I enjoyed this dream so much. I'm just glad I have found friends online to fill some of the gap, but I still secretly hope that the mysterious auburn haired girl returns to my dreams once in a while xx

Starting IVs

So today I started my ivs, I was quite upbeat driving there which is unusual as I was quite miserable last night at the thought of started them. I was woken up at 6.50 this morning by the guy delivering my drugs, hes very nice he puts them in the fridge for me and everything.

So heres what happens when I start my ivs. I arrived at the ward after i was very lucky and found a parking space right outside in a disabled spot (this does not usually happen!). As soon as I arrive I am told what room to go into. The ward has a few treatment rooms for outpatients starting ivs and emergency visits and then about 12 rooms for inpatients all with their own bathrooms, tvs, fridge etc. In the treatment room there is a bed, computer and trolley full of things like needles etc. I tend to lay on the bed rather than sit on a chair because then I can chill out! I stay in the room the whole time and they bring everything to me including a cup of coffee if I would like one. This is to prevent patients bumping into one another and causing cross infection, they even shut the door which is abit harsh as I like to nosey at the people walking past! They do the following to me

a) they take my temperature, blood pressure, sats which were 97% and my blood sugars levels which were apparently abit low at 3.7 but they did not seem concerned. They also take my weight which was 57kg today.

b) the physio comes to test my lung function. This is a portable machine that I blow into. I do a slow long blow for as long as I can and then one as fast as I can. Today it would appear my fev1 has improved to 41%, maybe I didnt try very hard on monday. I also give the physio a sputum sample for her to send off to see what is growing on my chest etc. I also gave her another sample which is going to be involved in some experiment, I hope it is not to grow a big psuedomonas bug that will eat people! I also asked her about my physio as now I am doing it twice a day I would like to do other things than patting as when I do it myself it hurts my hand. She is going to order me an acapella, apparently it vibrates as you breathe out. Sounds interesting...! She is also ordering me a new chamber for my ineb for my tobi as I told her it keeps leaking.

c) the dietitian comes to see me, asks me about my poos etc. Its always a pleasant conversation. She told me my weight was fine and to keep up the good work

d) the nurse comes and sticks the needle in my port, whilst she is preparing everything I sit and bite my nails because I hate having my port touched. The nurse today had never flushed my port before so I was very, very nervous, people have missed my port before and it hurts! She got me to lay down whilst she did it and she did it fine. She had to find me my special dressing I have as im allergic to nearly everything, the one I have is called supasorb. Im allergic to tagoderm, dermafilm, iv3000, opsite and a few others. My port bled back, yeay! I dont know what they do with the blood they take form me, I think they are making a clone of me somewhere.... She then connected up my first drug as the first lot has to be administered at the hospital (even though I bring them in from my stock at home) to make sure I dont have an allergic reaction. Im on colomycin and aztreonam again and I change them over myself, I freaked out as she gave me the heprin for at the end and put it on the bed!!! I was like 'erm thats not very hygienic, can you put it on the trolley?', these medical people are useless!! Its so much safer doing ivs at home!

e) doctor comes and sees me, I dont know why because its already been decided what is happening. He was one of these doctors that just goes through the questions, he took forever typing stuff up, god know whats he was writing!

When my drugs have finished going through i am free to escape once I have collected all my extras such as extra dressings for my port, prescription for tablets for my thrush (I always get it when on my ivs) and my epipens for incase I have an allergic reaction (it is a pen that shoots out a big needle and gives you adrenaline, the needle is so big I would have to be literally dying to have the guts to use it...). And thats it im home and I feel tired already from my first dose! xxxx