Old Diaries

On Sunday my Dad gave my brother a load of boxes containing things from our childhood, amongst these things was my secret box! A secret box contains things you do not want others to ever see, letters and of course your precious diaries! I have always done diaries and stories and all sorts, my brother found a bag of puppy in my pockets and sheets of paper with all their family trees that I remember spending hours doing. I've always been like that, I like things on paper or on laptop as is more common now! I do lists all the time, I cannot function without my diary telling me that I am doing for the next week, Pete and I have a spreadsheet so I can arrange all our outgoings, we had one for our wedding too. I have always known that my brain works this way, in my brain I swear everything is in categories and organised in a tidy manner. When I used to revise I would learn things in blocks and one block would lead to another. I am very organised and organisation requires records. So my life is also recorded as it helps me to remember it I suppose, this blog is now my diary but back in the day it was good old pen to paper!

So the diary found in the secret box starts on Christmas Day 1996, so I was 11 years old, nearly 12. It is apparent straight away that I was a brat haha. Here's the first entry:

'It's Christmas. Merry Christmas! I got one toy and that was Barbie and Keiko. I got everything I wanted and a few more things. Went to Little Nanna's for a while and then went to Pete's and nita's. Had a big Christmas dinner. Played with Loren and Jenny. It's not fair Jenny's got a sindy 4x4 and a Baywatch Barbie! Played Charades for a while. Went to bed at about 10.15pm.'

That's about the jist of my entries at the age of 11, I'd like to point out that I did get a sindy 4x4 and a baywatch barbie at some point. In fact the sindy 4x4 got thrown in the bin on Sunday as it was in the box and was broken!

The diary ends in 2005 on the 30th March because I ran out of pages. There are years when I didn't put anything in and then years when I wrote in it nearly everyday. As you can imagine what I talk about changes quite alot!

Its so funny and worrying at times reading through it. The one thing that surprised me was how little I mention my CF and even then it's only bits and pieces. The first time I mention it is the 30th December 1996 where I say 'did my physio then played at Lauras house with her new Barbies'. I was obsessed with Barbies, on the 31st December I made a new seatie for my barbies and sorted a family for my new Barbie Sian, because obviously a new barbie needs a family...! On the 6th January I say 'did my physio in my brother's room cause was so much barbie stuff in my room!'.

I'm pretty sure I was having overnight feeds at this point but I never mention it once throughout my whole diary, I sometimes say I had a headache or I felt sick but that's about it. My first proper CF entry I'd say is in 1997 on 11th May

'Got my stuff ready for hospital then messed around on the walkie talkie. Went to hospital had blood taken, I'm in a bay with two boys, one boy snores! Having my op at 8.30am tomorrow morning'

12th May - 'Couldn't have any breakfast. Went down for my op at 8.30. I was really weird when I went to sleep everything went blurred. When I woke up I couldn't see properly, Nana was waiting for me by the bed' I then go on to say my brothers and Dad came to see me and it was awful (!) and there is a gorgeous boy in my bay!
No idea what the operation was for, might have been to get my peg changed? Or get my first port?

I mention I'm getting a new pasport in 1999 and say how I'll get another dodgy scar and I hate having CF and that I'm crying. Then I seem to go through this weird stage of hating the world and everyone, aged 15-16 surprise surprise! All I seem to go on about is my friends and how I hate them all and my obsession with music and I'll admit quite alot about sex related things!

2002 (aged 17) seems to be the year I decide CF sucks
3rd Jan 2002 - 'Well I got my f**king needle in. Yipee! No life for the next two weeks! It's pis*sing me off already'...'I hate having CF, it might not seem too bad to everyone. But sometimes it makes my life unbearable. When i'm on my IV's I feel so dirty because I cannot shower properly, I feel trapped cos I can't do everything I want. I might sound selfish and ungrateful but I can't help how I feel can I? Is it wrong to moan about having this frustrating DISEASE. What a horrible, horrible word. Me? Have a disease? Sometimes I don't believe it, but then I just look at my scars. Well I must go and try to cheer myself up! C'ya Gemma xxx'

8th April 2002 - 'This next two weeks are going to be hell. I hate having CF, I hate having CF, I hate having CF, I hate having CF. I HATE IT SO MUCH. Why me? I HATE IT'

27th March 2003 - 'By the way i've still got CF, no magical cure!'

So in conclusion from reading my diary it appears CF did not become a big issue in my life until I became a teenager, even then boys, friends (who knew friendship was so complex when you are younger!) and music was more important! I just thought people who read this who have kids with CF might find it interesting and perhaps my parents, I dunno if it has bored everyone else! No one wants to take a trip down someone elses memory lane really!

I'll end on my diary entry dated 19th October 2004
'Hey long time no see. Just to let you know that i've broken up with S* last Wednesday'.....'I realised he doesn't make me happy anymore. We had a long chat and cry and he admitted lately he had felt different about me. He just doesn't seem to be the S I know anymore. I'm really miserable'....'so far i'm coping ok without him but i'm in so much pain inside'....''I'm going to a Barbie and Ken party on Saturday, i'm Hawaii Barbie! Got a wig, it's ace. I'm still at Uni by the way, it's pretty good at the mo. Gemma'

Guess who I met at that party and who I am now married to?! My wonderful Pete! I love you Pete!

*I started going out with S in 1998, we dated on and off for 6 years. He is in my diary a heck of a lot!

Busy Weekend

I've had a busy few days so think I'm just going to relax today and take it easy, I might attempt to go food shopping and walk Alfie, but we'll see!

On Friday night we went for a curry with my dad and his partner and my brother and his girlfriend which was very nice and I also had a few glasses of wine.

Then on Saturday we went to a surrogacy social event, which involved doing a two hour walk. Not the greatest idea for me to agree to take part in, but needs must and all that! As we got closer in the car I kept commenting to Pete how hilly it looked and started to panic! I really don't need to be coughing my guts up for two hours in front if people I hardly know and when I'm trying to make a good impression! At the start of the walk there was an easy route and more difficult one and we were all to meet up about 15 minutes later, I do not think labelling it 'easy' was the correct term. There were two really steep bits so not easy (!) but I managed OK and then once we were on flat and going back downhill it was even better. I think I would have struggled if I wasn't feeling great, but since my chest is feeling good at the moment I managed. I slept well on Saturday night anyway and coughed some very thick sputum up in my physio session that night! I really had to push myself to do my physio, I hate doing it when I feel really tired, it's the last thing you want to be forcing yourself to do!

On Sunday we went to a barbecue at Pete's parents as it was his sisters birthday. The weather was beautiful and we had a good day just sitting in the garden. Here are some pictures

Pete's sister the birthday girl!

Pete's sister, baby due in 11 weeks :o)

I couldn't sleep at all on Sunday night and managed to get about an hours sleep, even though I was so tired. I hate it when I can't sleep but then I'm too tired to try and do anything else! I can't understand how your body can not fall asleep when it's so tired!

On Monday my mum and I went to this barber workshop that was supposed to be on 3D patterns but it was like a basic barbering course, we managed to sneak out before the end. We sat there for two hours and didn't even get a break or offered a drink and the chairs were so uncomfortable! Couldn't wait to get out!

In the afternoon I had a flight test as we are going on holiday in a month, wahoo! I just managed to pass the flight test. When you have a flight test they put some gel on your ear for 10 minutes and it heats up your ear so it bleeds more. They then cut it , and collect some blood from it in a thin tube. They put the blood in this machine and it sucks it out of the tube it then gives some numbers about blood saturation levels and CO2 levels. They then put a monitor on your finger to measure your stats and then attach you to some oxygen and you have to wear the mask for about 20 minutes. During this 20 minutes they deliver you lower %;s of oxygen as what would happen on a flight. My stats were 94% at the beginning and the lowest they dropped to were 88%. After 20 minutes they cut your ear again and take some more blood and take the same measurements in the machine, they then remove the oxygen until your stats have returned to normal.

I am still sitting on borderline, which means on short haul flights I'm OK and don't need oxygen, but anything longer than 5hours+ and I'm going to need oxygen as I could start to feel unwell such as feel very tired, sick and get headaches due to low levels of oxygen and even end up having a collapsed lung.

I then had an outpatients appointment but they had arranged to see me on the ward at St James since I was already there for the flight test. My lung function is 41% and my weight is 55.7kg. So overall I'm stable and although my lung function isn't the highest it can be, it's sitting at about my average so they are happy with me and I don't have to see them again for 6 weeks, fingers crossed! I also had my port flushed which went fine, got my letters to take with me on my holiday (one says I am fit to fly and one says I need to take my medication with me for medical purposes i.e I'm not a drug dealer!), got a prescription for salt tablets for my holiday and off I went very happy! I need extra salt when I sweat as people with CF lose alot of salt and can get ill if it's not replaced, so whenever I am in a warm environment I need to take salt tablets. I took some at the weekend too as it was quite warm then. If I don't take them I tend to feel very tired and my body aches, especially my legs!

Ps- Sorry about the massive gaps between paragraphs, blogger is a pain lately and I can't get it to leave smaller gaps!

Presents On Our Doorstep

Well I have only injured my fingers once more since my last post, this time I managed to get a key stuck into my flesh whilst trying to lift it off a hook, the result was three gashes in my finger, one which insisted on bleeding every time I took the plaster off for about two days. I now seem to have got a hair stuck in it from when I've been cutting hair and I can't get it out, so now it hurts when pressure is put on it! Six days have passed and no injury, so perhaps that part of my life is over now, phew!

We have ordered our new fridge freezer, we went for the retro one as we found a website that sold it alot cheaper online, whether it turns up is a different matter! Pete, my dad and brother took out the old one on Saturday and got rid of the integrated cupboard, the freezer is still working for now, I hope it doesn't pack in before the new one arrives! We need to put some flooring where the cupboard was else the new fridge freezer will not be level, Pete says there are some spare in the garage and he'll just need to saw them to fit them in the gap. I hope it is as simple as he says! We all know Pete and I are not the best at DIY!

I've not been up to much this week, we have a few expensive weeks coming up so we are saving our money for those! However I did go out for a pub tea with my friends last Friday and then an Italian with my family on Saturday for my brothers birthday, so not doing too bad! That reminds me, I had serious gutwack on Sunday morning. I don't think I took enough tablets with my meal! I was sweating all night and then woke up in the morning with terrible stomach and back ache. This was proceeded by me sitting on the toilet for so long Pete came to check that I was OK and when I left I advised him not to use the bathroom for a while. Not pleasant and I won't go into anymore details of what gutwack consists of as it ain't pretty!

We have Hever Castle coming soon and I'm majorly excited! We are also going to decorate the front room over Easter and I've already purchased the wallpaper. I've been investigating my options as to how I can prevent breathing in any fungus when we strip the wallpaper. A CF friend suggested these special light bulbs that destroy any spores that come into contact with the bulb (http://www.eudemonuk.co.uk) so I'm going to order one of those and then get a mask specifically to stop you breathing in mould spores.

This morning Pete found two little bottles of Tropicana on our doorstep! I was straight away suspicious whereas Pete thought it was nice. Anyway Pete has drunk his and is still alive and I looked on the Internet and it seems it's some kind of promotion! They are on every ones doorsteps so now I'm starting to think it's nice too, maybe I should become more trusting..?

Sore fingers!

This week it seems to have been my mission to destroy my hands and fingers! First of all I wound up my friends cat with some wool and ended up getting a nice scratch on the skin in between my fingers which was really tender for a day or two. I don't blame the cat, I was annoying him but rightly so since I'd just had to dispose of a dead magpie he had presented to me as a gift! Poor thing!


Then I trapped my finger in a door, why do you hop up and down when that happens? Does it help somehow?! Then I hit another finger on the corner of a cupboard door, the nail side, this still hurts now. Then to finish it off I somehow scrapped a few lairs of skin off another finger, I don't even recall doing this but I know it bloody hurts when I try to bend my finger! So yes, I'm a walking disaster this week!


Our fridge has broken again! Can't believe it! There I was sat eating my coco pops on Saturday morning and again I realised the milk was warm, disaster! An engineer came out to see it today and apparently when it was fitted (before we moved in) they haven't put any holes in the bottom of the cupboard for ventilation and the compressor has broken which will cost about £300 to fix! So we are just going to get a new fridge freezer and hopefully get rid of the inter grated one and buy a normal free standing one. We went to look at them on Sunday in preparation for the bad news and saw this ace retro one that was quite expensive. Anyway the engineer said they are OK but not that good so sadly we may be sensible and get a normal looking fridge.


I'm feeling alot better this week, I even managed to go food shopping on my own. Now it's getting warmer I don't cough as much outside and can manage to put the bags in the car and take them out easier. The trolley is still hard work to push around since I'm a breathless weakling and trolleys have a mind of their own. However my chest is feeling miles better this week so I managed quite well. I went for a massage on Friday and have felt progressively better since the end of last week, so maybe it has helped, who knows?! To be honest I think massages are overrated, it was OK but I didn't like all the oil, I could hear it squelching and all I could think of was how sticky my skin was going to be when she had finished! I think I need to get a proper massage by a trained sports masseuse as I didn't feel like she pressed on hard enough to loosen up my muscles.


Pete is gym obsessed and going 4-5 times a week in preparation for the Great North Run, making me feel very bad with my twice a week attempts. He also somehow managed to talk me out of getting takeaway curry last night because he wants to be healthy whereas I don't care. There is defiantly a clash sometimes meal wise, I want high calories but I don't want a fat husband!


That's about my week summed up...!

Unexplainable Feelings

I feel like I'm struggling emotionally at the moment and I don't really know why. I have tried to cheer myself up by trying to keep busy but as soon as I'm on my own or doing my physio/nebuliser, I feel this sense pulling on my mind that it's all fake and underneath I am not as happy as I like to make everyone believe, does everyone feel like this?! I can't even explain what is wrong with me, for example on Sunday we'd had Pete's parents around for lunch and had a nice day. Then in the evening I started to do my physio and I just got so annoyed. It occurred to me that I spend an hour of every evening and morning doing my bloody physio, I can watch a whole TV programme doing physio, it doesn't seem a big deal but we started watching 'The Event' on catch up and I just thought to myself 'I'm still going to be doing my physio when this finishes' and I'm going to be doing this every night for the rest of my life. Then I started to imagine what it must be like to not be chained to a demanding treatment regime everyday and wonder how you are going to fit it in around everything. What it must be like to just be able to do things without consulting your doctor or feel like you are arranging a military operation. Anyway the result was that I had a massive cry which involved me telling Pete I just want to be normal, that's all I want.


It doesn't help that I have been off my IVs a week and I already have a cough and getting breathless doing small tasks, Pete even got annoyed with me last night as I kept waking him up coughing. I can't understand this coughing during the night, it's so unusual for me! A day can't go by where someone doesn't comment on my cough, it drives me absolutely crazy. I don't even know what I want people to do instead, I'd just rather not have a cough!


I don't want to ring the hospital, I can put up with it and I'm getting on with my everyday activities, is that what I'm supposed to do? After all I do have CF... or should I tell my team? Sometimes I forgot what is normal for me and what's not. Will they think I'm just paranoid or even worse put me on my IVs again or even worse, make me go into hospital?! If I think about even going into hospital these are the first thoughts that go through my head 'who will look after Alfie and Pete?' 'will my travel insurance still cover me?' 'people will judge me and think I shouldn't be trying to have a baby'. I don't feel unwell like I need to go into hospital but I haven't been in for years and it's only March and I've had 2 sets of IVs already, so I start to get all these random thoughts about what my CF team will suggest!


My friend suggested I ask to be referred to see the CF psychologist, she knows the team and says they are really nice. However I'm not depressed, I just feel abit fed up and I don't want it to be on my records, it's not like they can make my CF go away! She says it could help me though as I don't really tell people how I'm feeling as I'm embarrassed and I don't like people to worry about me. Also people don't understand as people seem to think that if you have a long term illness you just accept your life will be different and learn to deal with it, which I think I tend to do OK with most of the time. I'll see how I feel in a week or so, I usually have these little self pity moments and recover fine.


I actually feel guilty for feeling fed up, there isn't actually that much wrong with my life and much worse things happening in the world. I think all this surrogacy stuff (see my surrogacy blog) along with me not feeling great health wise at the moment is getting me down and I'm worried people especially in the surrogacy world will judge me (as I think some already have). I feel like I constantly have to prove I can cope and my CF is manageable. I just hate CF, it lurks everywhere and seems to taint everything I do no matter how much I try to not let it. In addition to this, my mum is on holiday and I wish she was here. Jeez I really am feeling pathetic today if I want my mummy....! I'm just glad we have got lots of trips and holidays coming up that are sure to cheer me up! If I have a plan or goal I usually feel better!


To end on a positive note after a downer post, here I am on Comic Relief ready to take donations!

Red Nose Day

I'm IV free! Wahoo! I swear this time around it has felt like they have lasted forever and I don't think I could have done another week!

I'm not sure what my lung function is as the physio gave me it in litres rather than a percentage, she said my fev1 was about the same, to me its either the same or not! Even a 1% increase is an improvement! She also said my fvc was up quite abit, again, not idea what 'abit' is! My sats are now sitting at 98-99% which is brilliant, they aren't that high very often!

I am feeling alot better, not as breathless or chesty and I wanted to come off the damn IV's and the Doctor had no concerns so wahoo! I've also been given some gel to put in my eyes to help lubricate them and some anti histamines, I asked for to cream to get rid of the dry skin and itchiness but I wasn't allowed! The Doctor thinks it's an allergy problem, I have to ring back if this stuff doesn't work. The Doctor also said to not wear my contact lenses for a week, yeah right! As if I am going to spend a week wearing my ugly glasses! The leaflet for the eye gel says to not wear contacts for 30 minutes after putting it in, so that is what I've been doing and wearing my glasses when at home. That's as far as I will go!

I started yoga again on Monday, it's so good to get back in to the swing of things. I'm going to try start swimming again now that it's getting warmer and lighter, it seems to give me the motivation to do it!

Our shower is driving me crazy, my first shower of two weeks was very disappointing...! Their is a leak in the pipe and also the thing you lift on the tap to make water come out of the shower rather than the bath taps, isn't working properly. So basically when you get a shower the pressure is pathetic as their is water spraying out of the pipe and leaking out of the tap. Pete and I's DIY skills are poor so I am dreading out attempts to fix this problem!

I'm going out for a meal with my friends tonight so should be good as there are a few things I want to get off my chest and get opinions on as well as catch up with them! Then tomorrow night I am volunteering to take calls for Red Nose Day! I think I will be one of the people you speak to if you ring up to donate money, not really sure! My friend works for British Gas and their call centre is taking some of the calls and he was asking friends and family to help out, so I though, why not? Wish me luck!

The Great North Run

My laptop is driving me crazy, hence why I am blogging less these days. It is so slow that I am going on it less and less as every time I come on it, I think I get high blood pressure and there is a risk I may throw it across the room! To be honest I think it's on it's last legs, I've had it since my second year of uni so that's about 6 years and I assume one day it is just going to die on me. However I can't afford a new one and I have no idea how to try and speed it up, plus I dread having to transfer all my files across to a new computer.

In addition to this I'm not sure if this blog is really serving a purpose anymore. I get bored of talking about myself and my CF since it's pretty much the same stuff over and over again, I don't know if anyone is interested in what I have been doing in my day to day activities. Maybe blogs are so last year or I need to change the angle of it, maybe I've outgrown it. I'm not sure. Anyway, that's why I am blogging less and probably will continue to do so but I'm not giving up on this baby yet, there is alot of my life from the past few years on here and it's grown to be full of information and it's interesting to look back and see how I've changed. My life is abit dull at the moment, I feel like it's not really going anywhere, but hopefully that will change over the coming months!

So I'm still on my IV's, I will hopefully finish them on Monday. I am feeling better but still not to my normal self so that's why I say 'hopefully'. I'd rather do an extra week than end up back on them in a month! The nurse came to see me on Tuesday and my sats are back to 97% so that's a relief. One problem I've been having more than usual is my eyes, they are so sore which always happens when I'm on ceftaz. They weep and all the skin on my eyelids and around my eyes gets dry and goes red, but this time my actual eye balls have felt like they were on fire at some points. I bought some eye drops for tired eyes from boots yesterday and they seem to help, it really annoys me though as my eyes look tired and sore and it makes me look poorly which I don't like, plus I can't wear any eyeshadow or eyeliner!! Other than that the side effects have been minimal, I think taking the anti sickness tablets really helps, it just gets rid of that blugh feeling.

I had abit of a crazy day on Sunday, we had lots of things to do with family and friends which meant some careful planning to fit my IVs in! I have my ceftaz 3 times a day and it takes 45 minutes to go through, the doses have to be a minimum of 6 hours apart from when the drug finishes. Usually I do them at about 7am so they have finished for 8am, then 2pm so they finish at 3pm and then about 9pm of whenever my tobramycin has gone through as I put that on at 8pm.

However on Sunday I had to get up at 5am so they finished for 6am so then I could put my second dose on at 12 whilst we were in the car on the way to Stockport. Then I had to take my evening tob and ceftaz with me in a cooler bag (they have to be kept refrigerated) as I knew we wouldn't be setting off to come home until late and we would be in a restaurant so I couldn't start them till we were in the car on the way home. In the end we didn't leave until 9.30pm and I had forgotten to get the drugs out of the cooler bag (they have to be taken out of the fridge at least 30 minutes before you use them to warm up abit) so sat with them in between my legs for 15 minutes to warm them up, so didn't get them on until 9.45pm and those two drugs take about 2 hours in total to go through. Then on top of this I had to do my physio when we got home at about half past ten. I can see why I get annoyed when people have silly excuses for not doing things that they have arranged, some people have no idea what length others have to go to, to do 'normal' activities.

This week I haven't done much, in fact I have felt quite lonely and down. I haven't seen my best friends for ages as they are always busy and then the time I did arrange to go out with them I wasn't well enough to go out. One of them is hopefully coming around tonight to watch a DVD, I don't think I have seen her since New Years Eve, how sad is that?! I shall be telling her she is neglecting me so it doesn't happen again!

On a totally separate note, my wonderful husband is going to do the Great North Run in September. It's a half marathon which is 13 miles and he is unsurprisingly doing it for the CF Trust! He has been getting up at 6.30am and going to the gym before going to work, so I hope you can all reward him by sponsoring him, even if it's just a few pounds. I'm going to attempt to put a link at the side of my blog because I know September is quite awhile away so you all have plenty of time to sponsor when you can afford to and the link will be there winking at you to remind you!! Here's a picture of my husband to remind you how fab he is and why you should sponsor him!!

http://www.justgiving.com/Pete-Gleave

VX-770

There has been some news surrounding CF and a tablet that can possibly help people with CF

Taken from the Daily Mail online (click here for the link)

The first drug to tackle the root cause of cystic fibrosis, rather than just the symptoms, could go on sale next year.
In trials, the twice-a-day pill dramatically improved the lung health of men and women with the debilitating condition.
They also put on weight and needed fewer antibiotics.
If trials on children are as successful, manufacturers Vertex Pharmaceuticals could apply later this year for permission to market the drug in Europe. Clearance is likely in 2012.
Britain's 8,000 adults and children with cystic fibrosis include Gordon Brown's four and a half-year-old son Fraser.
Cystic fibrosis is the UK’s most common life-threatening inherited condition and occurs when a genetic flaw produces a defective version of a protein key to the health of the lungs and digestive system.
Thick, sticky mucus clogs these organs, leading to recurrent chest infections and poor growth. Other symptoms include diabetes and infertility.
Although treatments have improved greatly in recent years, average life expectancy is under 40 and there is no cure.
In the trial, 161 people with cystic fibrosis were given either the new drug, which is known only as VX-770, or a dummy drug two times a day for a year.
At the outset, most of those taking part had just 60 per cent of the lung function of a healthy person - a figure that improved by almost 20 per cent by giving VX-770.
No other drug has produced such dramatic improvements, this week’s New Scientist reports, probably because they have tackled symptoms rather than the underlying cause, a defective protein in lung cells.
Patients also put on an average of half a stone in weight, suggesting the disease’s effects on digestion were eased, and were half as likely to need antibiotics for flare-ups.
Peter Mueller, Vertex’s chief scientific officer, said: ‘Treating the underlying cause of cystic fibrosis with VX-770 led to clinical improvements that were far beyond our expectations, providing support for an entirely new approach to the treatment of this disease.’

The Cystic Fibrosis Trust described the results as ‘very big news’ but cautioned that VX-770 would only be suitable for about 5 per cent of sufferers.
But a second drug, that is at an earlier stage in development, offers hope to another 75 per cent of patients.
Vertex is already testing a combination of the two drugs on patients and the first results are expected within months.


Now I'm not going to get excited, I'm not in that 5% and it's not a cure. I don't believe they will find a cure in my lifetime but I do believe treatments are improving all the time to increase average life expectancy. I have the common mutations of DF508 which I assume is the 75% they talk about, which they are running tests on next. But it's nice to know that in my lifetime there may be some people with CF who can take a tablet that deals with the cause of CF rather than the effects, there just isn't anything like that at the moment.
When I read that they have achieved a medication like this for my mutation and its available to take, that will be the day I have tears of joy in my eyes. Either way its great news for that 5%, it's not a cure but it's start!

A fellow blogger has a daughter with CF and she has done a great blog explaining more about the drug and how it works, click here to view

Revenge of the Sputum

Well I'm starting to feel slightly better in myself but I can't really say things have improved chest wise yet. I'm coughing less but when I do cough it's so productive and gloopy that I can't budge it especially since my airways seem to tighten up. I went to the toilets in Wetherspoons today which were upstairs and when I got into the cubicle I coughed so hard I started retching and proceeded to bring up some sputum unexpectedly. Luckily none went on my clothes and I grabbed a tissue before it projected out of my mouth! Not the highlight of my day but never mind!

I also kept waking up last night feeling like I couldn't breathe and taking big gasps on air in. It felt like there was a blanket of sputum over my airways, and when I breathed in it made a really loud wheezing noise and loosened the blanket but then when I tried to cough the sputum up I couldn't! In addition to this my sputum has had tiny dots of blood in it, nothing serious but it's still worth noting. Needless to say there is some freaky stuff going on and I just want to get back to normal please!

Yesterday I went to Scope and got a free mini massage. They arranged for a lady to come and do a taster session and I asked her to focus on my shoulders and back as they are tight from all the coughing. I'm thinking about booking a session as it might help with my posture and help me cough better. Just depends on if I can afford it really! My yoga teacher suggested I get a massage to help relax the tension since I can't go to yoga classes whilst on my IVs, so maybe I will!

Today I was supposed to meet my new mentee for an introduction session which is why I was at Wetherspoons, but she didn't turn up. So instead me and the other lady from Scope had some lunch so it wasn't a wasted journey! I had a curry that tasted more like a chinese, very strange!

Other than that I've been reading my book and learning quite abit about the first world war in the process and doing my knitting! I'm ashamed to say I haven't taken Alfie out for a walk yet this week, but at the end of the day that's why we got a small dog that doesn't need much exercise. A good run around the garden after the birds keeps him fit and I have promised him I will take him for a walk tomorrow! That's about my week so far! See you later folks!

Lost Battle

Well I'm afraid the cold won.

I started IV's today, I'm quite fed up if I'm honest. It's only about 4 or 5 weeks since my last set of IV's.

After my last post I developed a terrible productive cough and by the Friday I was coughing up about 2 sputum pots worth of sputum a day, I usually cough up about half a pot in a day. I'm not sure how much one sputum pot holds, maybe 60mls? I literally had to have a pot with me at all times as every time I coughed, sputum came up and it was large and thick. I was also coughing sputum up in the night which I don't usually do and waking up covered in sweat.

So I called the hospital on Thursday and asked if I could start oral ciprofloxacin, I was told by a Doctor I don't know that I needed to come to outpatients on the next day. So I went to outpatients the next day which was a pain as the fridge man was coming anytime before 1pm and my appointment was at 1.10pm, so Pete had to finish work at lunchtime as the guy still hadn't arrived by 12 and I didn't know how long he would take when he arrived. In the end he arrived at 12.15 and was gone by 12.30, but Pete had set off by then. Never mind!

At outpatients I was informed that in future to ask for one of the main CF doctors as they would have just put me straight on IVs or just told me to take cipro without seeing me, how frustrating!! Anyway my lung function was actually up to 44%, my weight was stable and my sats were 'acceptable' so I was sent home on cipro and told to phone back on Monday to update them.

Saturday was a horrible day, I think the cipro made my whole body ache and was coughing so much it was hurting my back and shoulders. I had to cancel the night out for my friends birthday and my friend wanted me to at least go around to see them before they went into town, but I couldn't face having to cough in to a pot in front of my friends and their friends who I don't even know. I hate seeing people cough up sputum and I have CF, so I can imagine how much it freaks other people out and it's just so embarrassing!

On Sunday afternoon I started to feel better, I was coughing less and even though I was still coughing loads of sputum up, it was less then previously. So on Monday I called the hospital and said I was improving, so I was told to give it a few more days on the cipro.

By Thursday I'd had enough, I am still coughing, there is just sputum sat constantly in my throat and in my chest, when I breath I can hear it bubbling and I'm starting to get headaches from the coughing. However now I am also getting breathless easily, for example I cleaned the table last night after tea and couldn't catch my breath to shout Alfie to come in from outside. When I do my physio it's like my chest tightens up and even though I know there is sputum there I can't get it up. So I've started IV's today, tobramycin and ceftazidime, I asked for tobramycin as I think it's better than colomycin, plus it's once day so easier to organise around!

My lung function today was fev1 39% fvc 54%, weight is still stable but my sats are 94% which seems low for me. Nobody seems concerned about it though, I suppose it just backs up the fact I'm feeling breathless.

I have been up to other things, my like doesn't revolve around CF even though you might think so reading this blog at times! When you have CF you soon learn that the world carries on and so must you. Pete and I went for Tapas last night, I watched Come Dine with Me on Saturday and she made Tapas and I just had an urge for it so we went the next day. My knitting project is coming on well and I can now cast on and cast off, wahoo! I've also been doing my voluntary work and meeting my new mentee this week and I'm going for a massage session/training which should be good!