Tuesday, 31 December 2013

Happy New Year

A quick post to wish you all a happy, healthy & wonderful 2014 :) thank you to everyone who has read, shared & commented on my blog this year, I really appreciate it.
2013 has been full of highs and lows. I started the year off very poorly but then Kalydeco came in February which is fabulous! I've become closer to some very special friends, made some wonderful memories, had a couple of hospital stays and some IVs mainly in the past 5 months but stayed positive nevertheless, carried on with my job which I love and enjoyed just being with my family, friends and boyfriend.
2014 will start with my 21st birthday celebration on the 3rd and my actual 21st birthday on the 9th! Then a Kalydeco review plus my annual review towards the end of the month. Fingers crossed for good results with that and then lots of friends 21sts coming up plus a friends wedding too in March!

I hope you all have a fab evening tonight - I'm spending it with two friends and all of our parents with lots of yummy canapés and champagne! Let's hope that 2014 brings lots of exciting things!
Lots of love xx




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Friday, 27 December 2013

Christmas

A quick blog post today just to say I hope you all had a lovely Christmas! It was so nice to have an IV free Christmas! I finished my course of IVs on the 23rd - there's nothing like cutting it fine!
Christmas is about spending time with everyone who is special to you & I certainly did that. Was so lovely to relax! Now I'm in to planning for New Years & my 21st!
I have two friends and their parents over for New Years with me & my parents so I'm making a list of yummy canapés to eat! And a week today is my 21st celebration! I am beyond excited :) then on the 9th January is my actual birthday! So lots of more exciting things to look forward too and to get sorted.
Last night I barely got any sleep as at 1am I woke up and my right lung at the top at the back was just agony if I breathed deeply, coughed, sneezed or anything. All day today it's been hurting so much too, I've never had chest pain like this so has been a slight worry. I phoned the cf unit and Judith said it does sound like a collapsed lung but I'm not particularly breathless so we decided it probably wasn't that & painkillers and rest would be a good plan and to ring if it gets any worse. This evening I can't tell if I'm slightly breathless or if I'm just panicking and even though I've had painkillers it's not changed. I'm so reluctant to go to a&e unless I have to so as long as it doesn't get any worse I'll stay like this and ring Judith again on Monday - or if it could just go that'd be amazing!
Fab news though! My friend Emily who I mentioned in my last blog receiving her double lung transplant was allowed home for Christmas! She has had to go back in but I spoke to her today and she said she's hoping to be out next week, I have everything crossed for her! It has been so lovely to get snapchats from her without her having O2 on! Please keep her, her family and her donor and their family not your thoughts :)
Oh and if I haven't said it enough times SIGN UP TO BECOME AN ORGAN DONOR! Make it your New Years resolution to give up two minutes of your time to potentially save peoples lives one day













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Wednesday, 11 December 2013

The holly and the IV

I have written two posts this time so please read the post below this one too, it's a very exciting one!!

After only getting a week of IVs a few weeks ago due to my port playing up it took its toll on my lungs and they need a proper boost! My temperature had been high for the past couple of weeks so I knew something was brewing but I felt okay so plodded on as I normally do, I didn't want to make a fuss if it was nothing. But last Thursday my head and sickness started to get bad, I just felt like the room was spinning and felt so queasy. Over the weekend it got worse and by Monday my lungs felt like they'd taken a blow. I had clinic on Tuesday anyway so went and explained how I'd felt and wanted some orals to tide me over until after Christmas and my 21st birthday in January but after doing my lung function which had dropped to about 45-50% we decided that I did need IVs to sort me out properly.
I've got Mero and Azteronum both three times a day. 12g of IV antibiotics a day will definitely take it's toll on my body. After only a couple of doses I'm already very achy, tired & feeling sick.
Today my chest has felt quite bad at times and chest pain is still there but hopefully now the IVs have been delivered and I can do them every 8 hours it means they'll start kicking the nasty bugs out!


On the upside at least I have some time to write Christmas cards and to try and make some decorations for my 21st celebrations! It always seems that every year I never get to enjoy the last two weeks of work as I'm too poorly - silly lungs!
But never mind, I need to be in tiptop condition for Christmas and my birthday so let's get these IVs out of the way now, they're due to finish on Christmas Eve so fingers crossed :)




Emily has new lungs!


I am sitting here with the biggest smile on my face and am so happy to tell you all that my lovely friend Emily Icke has received a double lung transplant! Yesterday, 10th December, marked 1 year of waiting on the transplant list. Emily got the call and after many hours of waiting to find out whether it was a go or not it was announced that at 7.15pm she would head down for her life changing surgery. I spent the whole day checking my phone, giving words of encouragement and just thinking about Emily but also her kind hearted donor who made this possible and their family.
Today is she is awake and breathing for herself - just amazing. Words cannot describe how happy I am for her, David and their families.
This is exactly why organ donation is so important.


Christmas is about spending time with your loved ones, family & friends and enjoying it. It isn't about how much your Christmas present cost or how many gifts you receive. So many people this christmas just want the gift of life, whether that's a lung or a heart, kidney, liver etc transplant and for somebody to give that gift..well words can't even describe it. You literally will change somebodies life.
All you need to do is go on to the organ donation website, it does only take a couple of minutes to sign up. But you MUST tell your loved ones about it as they make the decision when the time comes. I know some of you may not want to discuss it or sign up as it 'seems too morbid to be thinking about your death' but you never know what is round the corner and you could save lives, be that person who is thought about everyday and be somebodies miracle.
https://www.organdonation.nhs.uk/how_to_become_a_donor/registration/registration_form.asp


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Wednesday, 20 November 2013

Paddy's in the spotlight again

For any new readers, just so you know Paddy is my port and not a mad Irish cousin of mine!
After I was discharged from hospital on the Friday, under the promise I would take it very steady, I stupidly got my IV line caught when connected and ended up yanking my gripper out - not a pleasant experience! I rang the cf ward as it was 7pm on a Saturday & all I could hear was Sweety laughing on the other end of the phone saying 'what are you like!' so I quickly popped down (bonus to being 1min away from hosp) and she put a new gripper in. Unfortunately some of the drug had gotten in the skin so for the next week I spent everyday going down to hospital as it would work for a while and then stop. In the end it wouldn't work at all! Judith said she'd book me in for a Portacathogram (which Charlie and I think sounds like some sort of strip-o-gram for hospital people!).
My worst fear was that it was kinked or there was a leak which would mean an op to have it out and I would be Paddy-less. Luckily the scan revealed that nothing was wrong and we've put it down to the area being swollen due to the drug leaking into my skin when I pulled the gripper out. So much drama.
I was in a bit of a funny mood all week, quite low and fed up. I guess I was thinking too much about things. I went back to work and was just exhausted, even though I had only done two days and then it was the weekend. Even today, it's only Wednesday and I'm ready for a weekend so I can rest.
The main worry is I didn't manage the two weeks of IVs as paddy threw a strop so I could get poorly again soon, but then on the other hand I could be fine! The past week I've been feeling okay but a temperature of 37.8 every day and I'm not entirely sure why. They usually come down but then later on are back up again, I've had a little bit of chest pain but my breathing is ok and I'm feel fine in myself. Me being me just carries on and tries to ignore it! I was sitting in bed the other night thinking other people don't have to worry this much about the possibility of getting sick, to others it seems such a silly thing to worry about as you can't do anything to avoid it (as such) but when you're in that situation it does crop up in your mind from time to time. In a couple of weekends it's Tom's birthday, then Christmas, then new year and then my 21st & I was thinking, if I need IVs I don't want to miss out on any of these occasions, hopefully I can make it to the 9th Jan without feeling ill enough for IVs!
Well now all the boring medical things are out the way I can say that I have finally sorted out my 21st (minus a few details like making things) so I am very excited about that! I have found the perfect sparkly dress for it too so even more exciting although maybe not for any male readers who probably have stopped reading by the word 'sparkly'! :)
I'm just needing to organise myself at the moment as I have so many things I need to do for my birthday, Christmas, work things. Which is mainly why it's taken me a while to write this blog as I've been so busy doing various things.
Have a good rest of the week and I'll try to keep things updated!




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Sunday, 3 November 2013

Hospital freedom!

After a few days in hospital they said I could be discharged as long as I took it very steady, however it wasn't Dr Ho that saw me (was some random but friendly registrar) and I reckon if Dr Ho had come he would have kept me in over the weekend but as you know, I was determined to get back home. I did feel better otherwise I would have stayed but I felt like I was on the mend so homeward bound I went. Whilst I was in hospital they let me try a machine called 'the bird' which is a machine that basically breathes in for you. I used it for physio, it was very strange at first as it just forces air in to your lungs but it felt great to not have to put the effort in and parts of my lungs that haven't been inflated in a long time were getting air.





It got me thinking though.. Spending time in hospital, doing IVs at home just seems so 'normal' and 'everyday' to me, it doesn't seem like a strange occurrence. Quite strangely I became jealous of those who can just go out when they want, not have to rely on how sick they
feel, have to juggle medication times, not sit and think 'how far away is where I need to be from the parking' incase you can't walk that far. Pretty much everyone I know was out celebrating Halloween last night whilst I was tucked up in bed, feeling sick and it got me so down..CF presents mental strain as well as the physical and a lot of people don't realise this especially when you're not sitting there moaning about it 24/7.
When I'm well it's okay and I can do a lot of things and not have to worry too much. But when I'm ill I get ill very quickly and it seems to hit me hard, this time a lung function drop of a litre in a week and struggling to breathe comfortably.
However then comes the guilt, I see my lovely friends who are on the transplant list suffering and I feel so bad about complaining about how ill I feel when in comparison, they're suffering so much more and everyday. Sometimes things feel so unfair, people have to go through this, their close family and friends go through it with them yet so many people are so oblivious to what goes on because a lot of CFers just slap on a smile and say everything's 'okay'. We NEED to raise more awareness, the bad side of things but then the good side of people who have had their transplant are doing amazing things! So here comes the plea..please please sign up to become an organ donor, it is so urgent. If it was your friend or your family member or you dying you would want the gift of life from a stranger so don't be hypocritical and sign up - the link is on the side on my blog, live life then give life.


Me being the eegit I am, managed to yank out my gripper yesterday. I was connected to my IV put got up and the tube got caught on the sofa so the needle moved and the mero was going into my skin rather than my port which really bloody hurt! So I popped down to hosp (so glad it's a min away!) and had a new one put in :) Today I've got a few chest aches/pains and I'm feeling rather sick so I'm hoping that it soon stops as I know that if I see the Dr again he'll admit me! I've got about a week and a half off work as I can't work with my gripper in so I'm going to go for walks around garden centres and things, seeing the Christmas decorations, with Mum to build my stamina back up and get these lungs working properly :)
Fingers crossed everything starts to go on the up.



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Thursday, 31 October 2013

Feeling like you're drowning is the worst feeling

Sorry it's taken a while to write this blog but I've been so ill past few days and just not had the energy to focus and type.
It's hard to explain to people how it actually feels when you're struggling. I think people assume that it's how they feel when they have a cold or just think "but you deal with it all the time so surely you're used to it?" But you're not and with each tiny breath you hope that you'll bounce back quickly and wont deteriorate any further.
On Tuesday they admitted me in to Frimley, I wasn't too surprised as I'd had an extremely rough weekend and although I kept a smile on my face I knew that I was heading for a little stay so it wasn't a shock.
I'll start from the beginning..Last Thursday I came home from work with a cold starting & by Friday evening my cough was all the time, I couldn't go more than a minute without coughing. 9am I was exhausted so went to bed. I woke up at 2am with that all too familiar feeling of a high temperature. It was 39.1 and stayed like that for ages but eventually it started to come down but it took until 4.30am to get to 37.7. I just really couldn't breathe well and that took it out of me. The exact same thing happened all weekend, my chest felt like it was full of glue and was so uncomfortable to breathe; it sounded like I'd inhaled a bowl of rice krispies. I managed to get out for my best friends 21st on Saturday evening as it was just a meal so I could sit down and relax, didn't have to be running around anywhere. 
In clinic on Tuesday we found out my lung function had gone from about 2.3l (65%) to 1.3l (37%) so I was not happy at all, it's a massive drop in such a short space of time (a week). Feeling like you're drowning is the worst feeling. Dr Ho put me on IV meropenum and IV aztreonum and I managed to get a room in the evening. I had a little bit of O2 on the first evening as my SATS were a bit up and down and it helped my lungs along. 
You can't always explain how horrible it all feels and I wish someone could feel what it's like, just for 5 minutes, so they can get some perspective. 
At 2am Wednesday morning my poor night nurse woke me up, "I'm so sorry, they want you to come for your x-ray now" - apparently the radiographer who'd had my slip for ages decided that 2am would be a fabulous time for me to go. I was not a happy girl! And when I got back there were lorries outside my room unloading things and beeping so I didn't get much sleep at all that night.
Dr Ho saw me this morning and said he wanted me on some steroids (pred), much to my disgust..I hate steroids with a passion. They make my face so rounded and make my moods all over the place. But if I need them then I'll have them. I did ask when I can go home as I previously had said I'll stay in if I can go home by the weekend and he said he'll see me tomorrow and if I am improving maybe tomorrow or over the weekend I could go, but he really wants these huge coughing fits to ease up a bit as just as he walked in I was throwing up from coughing so much! 
Fingers crossed that everything starts improving and I can finish the course of IVs off at home - I'm having patches where my breathing is easier so that's a promising sign. The physio said we might try 'the bird' which is a machine that pushes air in to your lungs to help you breathe so will hopefully expand my airways and help shift all the mucus that's stuck.
Happy Halloween :) 



Saturday, 19 October 2013

Progress & exciting things

First thing! After a month of mucking about with various tummy meds Dr Higton reviewed my latest xray on Friday and said that the blockage is pretty much gone, finally. You would think it would be a massive relief, and in a way yes it was - I was glad I could go back to work, have my driving lessons and go out with friends, Tom & family. However my heart did sink a little; why am I still bloated and in pain? I look pregnant when I've eaten, have stabbing pains and am always so full up. Dr Higton and I had a chat; she said that my stomach could still be irritated or it could be more like an IBS type thing. So she suggested I take some peppermint tablets, carry on with a smaller dose of the tummy meds so I'm able to go out, work and everything and if in 3-4 weeks it hasn't got any better or gets drastically worse they'll refer me to a stomach specialist as it could be an intolerance to certain foods (although I get it no matter what I've eaten) or another problem that she cant identify. 
Fingers crossed that it's just irritated and the peppermint tablets, lots of water and exercise stop it all and I can get back to looking normal and not like I'm expecting! 

Second (much more exciting) thing! Mum and I went to our cocktail masterclass last weekend, it was amazing! The guy who hosted was hilarious. We enjoyed 3 cocktails that he made and then we were let loose behind the bar to make our own cocktail! Mine was crushed fresh strawberries, vodka, sugar syrup, gingerbread syrup topped up with champagne. It was really interesting the things they told you - about the how the freshness of the ingredients make a difference, how you need a certain percentage of alcohol and the quality of the alcohol too. 

I've wanted to get back in to swimming for a while now but every time I plan to go I end up ill. Finally I managed to get there yesterday. Pretty pleased with myself, I managed 1 length, then a break, then another length & so on and carried on for about 20minutes. My plan is to work my way up to doing more lengths in one go and staying for longer - it's a bit heartbreaking as I used to be able to swim for ages, just fast strong swimming and no stops. And now after 1 length I'm puffing away and having to stop to catch my breath. But I know I'll get there, it'll just take time - I wont be able to swim as much as I used to but I know I can get it better than what it is at the moment and I'm determined to! :)

I'm back off to work on Monday and then it's half term so at least it eases me back in gently! 
Have a good weekend xx





Wednesday, 9 October 2013

Hard to put into words how you feel..

It's hard to put in to words how you feel sometimes. Right now I feel as though my insides are made of Velcro and fuzzy stuff, my whole body feels so strange. I keep feeling quite out of it and when I look and move my hands it feels so bizarre. My head just pounds ALL the time as though there's a little man with a drum kit in there! The sickness swirls over me and it's so difficult - I know I HAVE to drink as the stomach meds make you so dehydrated but with every mouthful it makes me retch. Food was okay but I'm starting to feel less and less hungry and it's becoming more of a task - you shouldn't have to feel that eating and drinking is a chore. This is sooo much worse than last time I had these meds two weeks ago.
On Monday night I had horrific stomach pains, right up the top. It felt as though someone was stabbing me. Five minutes of intense pain then gone, all of a sudden. And just as I though it was finished it'd come right back. I was just curled up on the sofa unable to move, mum got me a hot water bottle to see if it would help and eventually I made it upstairs so I could go to bed.
It's mainly when I wake till about late afternoon that I feel at my worst, the heart races, head is so bad, sickness is high, I feel so 'fuzzy' as I like to put it and even though I can't always sleep, just no energy to do anything either.
I know that if I start to be sick I need to ring hospital as they can admit me for fluids etc to keep me hydrated but I really don't want that :(


On Saturday mum and I have a cocktail masterclass and lunch in Harvey Nichols in London - it's a present I got her for her birthday in July and I just cannot change it so I'm stopping the meds for a morning so we're able to go :) then as soon as we're back home I'm starting them up again.

So for now I'm just doing what I've been doing all week, either lazing in bed for the morning and then moving downstairs to the sofa to relax whilst having breaks to just walk around the house to stretch my legs. My chest is starting to join in on the action now too so I'm hoping it doesn't pipe up too much! Otherwise I will be having to ring hospital for a stay in..
I wish I could just sleep all the time as when I'm asleep I don't feel so ill.
Have a lovely rest of the week xx



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Friday, 4 October 2013

Stomach & chest are both fighting for attention!p

Hey everyone :)
After a really bad week chest wise (temperatures, feeling like I was drowning, all the fun things!) I went back to work last week, managed okay considering, but by Monday the blockage pains returned - I did wonder if they would as I am still extremely bloated.
I went down to hospital this morning; my lung function was slightly better but still not great but Dr Higton decided that as I was improving we would leave that but that I must ring if I get any worse.
They re X-ray'd me to see what was going on and as we thought there's still a blockage there! So we're back to the same meds for a week, possibly two. Unfortunately the tummy meds stop the Kalydedo working as well so I am expecting to feel shit for the next week or so anyway due to that. The evenings can still be pretty rough chest wise at the moment too, coughing fits just exhaust you and hurt.
So that all means no work because of my stomach and my chest, so as you can imagine I'm pretty upset. The past week I've been feeling quite low anyway so this really has added salt to the wound. Mums been amazing, treating me to Starbucks, getting me some lovely Lush bath bombs and just generally being there for me to cheer me up :)
I'm hoping and praying that 1-2 more weeks of this and my stomach will just be back to normal - I've had enough of the pain and looking like I'm pregnant now! We're fiddling around with my Creon too as the dosage was upped when I was very very sick and very tiny so we're wondering if actually they're too strong and I need less so it'll be a bit of trial and error I think!

Cross your fingers everyone because I think if it doesn't work this time I'll be on even stronger meds or may have to stay in which is obviously something I really don't want.
If you have any ideas of things to keep me entertained whilst I'm off please give me suggestions!
Have a lovely weekend :) xx- Posted using BlogPress from my iPad

Saturday, 21 September 2013

These orals better kick this infection in the balls.

I feel like I've hit that oh-too-familiar downwards spiral that I recognise from pre-Kalydeco days.
Over the past few days since I last blogged this cough has started. First of all it was your usual 'I've got a cold' tickley cough. Thursday night I was feeling pretty flushed and my temp was slightly up, not too much so wasn't particularly worried. But overnight my cough changed, I woke up at 6 for my tummy meds and was coughing away for a good few minutes. Not impressed I chugged down the meds and went back to sleep hoping it was just a bit of post-nasal drip that had set me off.
I woke up a few hours later and felt all out of it and my cheeks were bright red. My cough was further down my throat and so painful. Luckily the thermometer was right by my bed so I reached out for that - 37.8 shit. I've had temperatures way worse than that before, don't get me wrong, but the fact it was nearing to 38, I was coughing & judging by the way I felt I knew too well this was how my chest infections begin. I tried to dose in and out of sleep all day Friday but I kept coughing just as I was dosing off and it made me jump!
My friend Katie came to cheer me up in the evening so we had a lovely chilled girly night.
I realised at the end of the day and checking my temperature, popping pills and all that malarkey that after 3 or 4 hours my temp was right back up. My heart sank. Usually I used to have a temp and it would go and stay down for a fair bit, but the past two times I've been really ill it's been hard to manage. Yes again I know it could be a lot higher and it has been a lot higher but 38 is pretty high and I just can feel something inside that's taking me back down that slope.
Today I woke up, same thing but my cough again had moved further down and now it sits and the top of my chest which is bloody agony! Every time I cough it feels as though my collarbones are breaking. My temperature is doing the same thing.
Also, I feel like I have an elephant sat on my chest permanently, so if someone could remove it I'd be most grateful! :)
I've got Jess over this evening for a film night in, we were meant to be going out for some drinks but it's too much of a struggle. I managed to go out for a little while earlier to buy some fondant to make cupcakes for mum and dads 25th anniversary on Tuesday but that was hard, every time I cough when I'm walking I feel as though I'm going to pass out!
So we will see how I go over the next couple of days. I have a clinic appointment on 4th October so just under two weeks but if this carries on I think IVs are inevitable - not what I want as it's two weeks off work :(

It really is scary when you lie there at night with a horrible temperature, coughing literally every 10seconds (if that!) especially when you've had such bad experiences in the past, it immediately brings that flooding back. My breathing varies throughout the day, seems to be worse in the evenings but I've got my lovely nebs! I'm really hoping these orals that I'm on kick this right in the balls so I don't need IVs or hospital and I don't get as sick as I have been before. I'm willing my little lungs to keep going, I really don't want to start heading back to being very ill, unable to walk far. You never know how you're going to be though, the fact this has all started in a matter of days you can't tell if you'll become very ill very quick or if you'll be fine after some orals and week of rest. So you've just got to make the most of what you're doing now and keep plodding on :) only thing to do!
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Wednesday, 18 September 2013

Body is going tits up!

Why is it that your body seems to be perfectly fine for a while and then decides to throw a wobbly?
Monday I made an emergency appointment to see Dr Higton on Tuesday - I thought my blockage had got better but it came back with a vengeance. The past few evenings my lungs have thought they'd join in the action too and yesterday I felt awful, just in time to see the doctor. Obviously lungs were fed up of my stomach having more attention than they did.
I had two abdo X-rays which confirmed my stomach issues. Radha popped in to do my lung function but unfortunately it had dropped to 1.7 so I've started on some orals in the hope they will help things. Fingers crossed I won't need to go on any IVs!
Yesterday evening I really suffered though, searing and shooting pains through my left lung and then just lung pain all the time in various areas - I have never had lung pain that bad, I was in agony and breathing was such a challenge too.
Hospital know me too well and know that within a couple of days I would have rushed straight back to work and doing loads of things so they have said no work this week & to rest at home..need to sort out my stomach first plus we don't want my lungs straining hard and getting a lot worse.
This morning I'm feeling really sick so just relaxing in bed for a while before I feel like I can move.

But never mind, I keep on plodding on and hopefully in a few days I'll be feeling more like my usual self! The past week I've had a few emotional days for various reasons so it's quite nice to relax now & reflect over things that have happened.
I'll try and update in a few days, lets hope it's good news!



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A year can feel so quick and so slow

One year ago I lost my lovely friend Samantha Morris. One year ago I lost the first person I met in Frimley cf unit, the girl who supported me when I was so ill and scared. Sammy was the toughest chick I've ever met. Tuesday 17th September will always be a date that sticks in my head.
A year has felt so slow, a long year where I'm always thinking of her, trying not to cry in the anger, hurt and emotions that come flooding back every single time I think about her, even in happy memories I find myself laughing and crying at the same time. Although I can hear her calling me a dopey cow and to stop crying!
Yet in another way a year has gone so quickly. I can't believe it's been that long when it feels like barely anytime has passed since we were chatting away, sneaking out of our hospital rooms to chat in the corridor!
I miss Sammy so much but she inspired me to stay strong. Stay strong like she did. And if I can have an ounce of the courage that she had, then I'll be proud of myself.
Today mum and I went into the park and did a balloon release in memory of her. The minute we stepped out the car the heavens opened and the minute we got back in the car it stopped! So I knew that was Sammy making sure we didn't cry but laughed as slipped down the hill!

I miss and love you Sammy ❤




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Sunday, 1 September 2013

Bloomin' Blockages!


The past few weeks I've had a niggling feeling in my stomach that I usually get when a blockage is beginning so I had a few movicol once/twice a day to see if it would help. But Saturday morning I woke up and half way through getting ready my stomach made the most strangest of noises...almost like when you turn a tap on, it gets an air lock and splutters! Not long after, I was sat on the sofa feeling rather hot, took an antisickness tablet as I suddenly felt very ill and curled up. I just wanted to cry with the stabbing pains in the top of my stomach and with the intense sickness that I hadn't felt in a long time. Not long after I just had to go to the bathroom and was ill. Felt so much better. The minutes feel like hours when you feel that ill. I went and got a drink but every time I had a few sips it just wouldn't stay down. After a while mum wondered whether we should go to a&e as I couldn't keep any fluids down and was starting to get too dehydrated. I ended up drinking a little more and falling asleep on the sofa and after 15 minutes woke up but started to feel better.
Luckily I managed to keep liquids down so after 4 hours I tried to eat a bit of food and that was okay.
Today I've still not been ill which is great, I've had some stabby pains but not as severe, I've stayed on top of the movicol and made sure I've been drinking plenty. I'll probably ring clinic tomorrow and speak to Judith, let her know what's been going on (just in case they want to see me) and arrange a port flush. Then have a nice day out with mum and a girly night in with Luci before work starts on Tuesday :)

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Tuesday, 27 August 2013

Holiday!

I'm back from Ilfracombe, we had such a lovely time.....visiting lots of places, paddling, boat trip, lots of tasty dinners out and cream teas!
Safe to say I was knackered every night after being out during the day but it was worth it and there was no way I was going to let my lungs not let me go out and enjoy myself, no matter how tiring it was! Mum did make sure we had plenty of tea/ice cream/cake breaks so I could get some energy back (always a good excuse for some yummy food!)
I won't go on and on with a day by day synopsis as I'm pretty sure most of you will fall asleep half way through! I just want to go back, such a beautiful place :-) and the sea air does make you feel better, my lungs feel heavier back home - maybe I could get a holiday home by the sea on the NHS ;)
I've got a week left and then I'm back at work again. This summer has gone so fast but I think spending the first week in hospital, the second week still on IVs at home and the third week recovering I feel like I've wasted some of it - but never mind.
I've got an appointment with the neurologist soon about my silly leg pain, all the test results came back ok so I think it's going to be either 'you will have to put up with the agonising pain' or maybe some more tests.
Also, I still need to do my exercise test for the Kalydeco check up as I was too poorly at the beginning of the month to do it.
Let's just hope I can keep myself off IVs and out of hospital for a while! Fingers crossed :-) have a lovely week!












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Location:Holiday!

Friday, 16 August 2013

Tablets that are meant to make you feel better, make you worse!

Last week Dr Ho re-started me up on domperidone in the hope it would stop me feeling so bloated all of the time. It hasn't. In fact, instead of helping its made me feel really sick and has given me awful acid reflux, oh the joys! I wondered why all week I had felt so bad. Then last night it was just so so painful, just felt like I'd swallowed acid. I'd already had my omeprazole and ranitidine which did nothing so in the end the only thing that helped was to drink lots of milk! Today I didn't take any domperidone and so far *fingers crossed* I haven't felt too sick or had bad reflux..hurrah!!




I'm off on holiday tomorrow which'll be lovely, off to Ilfracombe for the week. Very excited, I can't wait :) The only thing is the realisation of how the past two and a half years have affected me - last time we all went on holiday for a week I was 15/16 and in great health. Since then I've had 1 near death experience and a few really poorly patches..I'm not feeling too bad at the moment but still notice how tired I'm getting after a day out or needing my extra nebuliser if I've been doing more walking than usual so it will be interesting to see how I feel on holiday. The good thing is that I always feel better by the sea..good salty air is great for the little lungs!
I've packed everything....I think! There's always something you forget and I'm awful for checking everything a thousand times!

I have fab news too..Katie and Kirstie are doing well after they both received a double lung transplant :) two very strong girls.
Had a lovely tea and yummy cake evening with some of the girls yesterday, was lovely to catch up!
Hope you all have a lovely week and I'll blog when I'm back!





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Sunday, 11 August 2013

Clinic, transplants & a well deserved holiday

My IVs finished Wednesday evening so straight after mum pulled the gripper out I jumped straight in the bath - nothing is nicer than a post IV bath! Tom came with me to clinic on Friday morning..my obs were the same as before, lung function was down a bit though but dr ho said he wasn't too worried about it but to keep an eye on how I feel & if I start to decline to go straight back. He did mention about steroids again if my lung function does deteriorate and I briefly said my concerns..that I was so low when I was last on them, even just 5mg, so he said we can cross that bridge if we come to it. They're so good there, never put your feelings to one side :) so now it's just a case of carrying on as normal and keeping an eye on things. I keep getting patches where I feel crap but it's not all the time luckily.




Two very amazing girls both received a double lung transplant yesterday! Such fabulous news :) Kirstie had a dbl lung tx 2 years ago but recently suffered with chronic rejection and deteriorated very quickly..they had such a tiny window to find lungs and by some miracle and the caring nature of a donor and their family Kirstie managed to get a new pair of lungs! And Katie who is only 14 received her dbl lung tx too yesterday! This is why joining the organ donation register is SO important, to give people another chance at life is just incredible. Please please please go on go the organ donation website and sign up..it takes two minutes.
It always makes you think, you have no idea if and when you'll need a transplant. I could need one next year or 20 years down the line or I could never need one. You just don't know but when you see people as strong as these two girls to through this it makes you feel inspired & brings the cf community together. I try not to think too much about the future, I know how it feels to be that sick when my lung function was 16% and I was just lifeless..somehow I came back from that but it does make me wonder wether if that happened again whether I'd get back from it or if that would be how it's going to stay. You never know what's round the corner, just always be grateful for the ones that love and support you because you never know when you'll need them the most.





I'm still feeling pretty tired from my hospital stay, IVs and then trying to do too much when I came out of hospital but I'm doing what my dr ordered and going on holiday next week. Mum, Dad and I have booked a stunning apartment in Ilfracombe, Devon. Very excited, it'll be lovely to just get away for week :)
Please keep Kirstie and Katie in your thoughts whilst they recover from their transplants :)




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Thursday, 1 August 2013

Why is nothing ever simple?

After I spoke to Dr Higton about not going on steroids due to how low they made me feel they suggested using a steroid inhaler instead as it's absorbed in a different way so you wont have the same side effects. I'm now on Symbicort which seems to be working pretty well! Wednesday afternoon they said I could be discharged from hospital on the provision that I "don't go wild" - they know me too well, usually try to do everything the minute I come out of hospital or am on IVs! The nurse said to pop back at 4pm to have the last IVs of the day as home delivery IVs don't deliver in time for the morning dose. So I popped back and they had to change my gripper (the needle and tube that you put into the port to administer IVs). First flush was ok, then first few mins of IVs were ok but it stopped & then wouldn't flush again. Tried a second and third time; it still wouldn't flush so Sweety said she didn't want to do it again as it was getting really painful and I was pretty stressed. So I came home for a bath, tried to relax as best as I could but had no idea if Paddy had turned or was kinked. Why is nothing ever simple with me?!
I went back this morning, dreading what would happen - Judith said we'd try it one more time and if it didn't work we'd then come up with another plan. She put a gripper in, flushed it fine and plugged in some IVs..they worked fine. HURRAH!
Judith thinks the first gripper went in wonky and therefore some fluid got in to the tissue so it swelled a bit meaning the other grippers couldn't get in to place properly. 

This lot of IVs are making me feel quite sick and completely shattered. I'm having a great sleep at night, sleeping during the day and then still tired. Plus they keep making me want to cry all the time, even when I'm happy! I think anything, even a cute little dog, will make me burst! Plus the panic attacks come back..just horrible.


I'm back to hospital next Friday to have a check up & hopefully stop the IVs. I'm managing to get out and about a bit to get exercise for my lungs, plus I really want to go shopping so tomorrow mum & I are off to Bicester Village to have a look at their lovely outlet shops...at least with mum I can have a break after every shop if I need to without worrying that she's going to get annoyed! :) She came in everyday I was in hospital to sit with me & helps a lot with my IVs when I'm too tired or feeling to ill to do them. Words can say how much I appreciate and love her.


Lets hope for a good drama-free week! 

Sunday, 28 July 2013

Struggling for breath

Short blog guys as I'm feeling pretty sick and don't fancy vomming all over my mac! I had a really bad night last night just struggling and fighting to get a good enough breath in. Even night nurse Sue who is always very calm was getting concerned. We checked my sats which were 99 unless I spoke and then they went down to 96. My lungs feel like they need oxygen yet the machines still are saying no - it's such a confusing situation. 
I spent a good couple of hours really struggling; it was just so scary finding it so hard to breathe. In the end it was very tiring and I ended up falling asleep. That's all I want to do lately is sleep..if I'm asleep I don't feel sick, I don't realise how much I'm fighting for each breath and I can forget about it all.  I'm feeling better today than I was last night but it still feels like a lot of effort goes in to every breath. 
Dr Higton mention about going back on to steroids - she should be coming round tomorrow so I'm going to talk to her about it, I cannot stand the side effects. I was so low last time I was on them & I don't want to go through all that again. 
Sorry for the short blog, I'm going to go try and have a rest now. Hopefully have some more energy to see my grandparents & Tom who are visiting later. Lets hope tonight is a better night :)


Saturday, 27 July 2013

Hotel Frimley Park Hospital

In the end I listened to everyone telling me to see the docs & popped down to the CF unit on Thursday - however I did make it to the end of work so I'm very happy about that! :) 
Very odd things happened..I did my lung function and sats (oxygen levels)...they were fine. Dr Higton took me for a 30 second walk but I was just gasping for breath. We sat back down in the room and all tried to figure out why I was so out of breath, yet my obs were all appearing ok? She said normally if a patient came in like that you'd assume it's a blood clot in the lung, although for some reason CFers don't tend to get those - but she thought she'd do some bloods just to check as it's not impossible..that was a long hour waiting for the results of that, just filled with panic at 'what if it's a blood clot' 'what is making me feel so ill' 'will I be staying in'. Luckily at 3pm the results came back negative - phew! Still back to square 1 where we have no idea what is doing this. So after a chat with Dr Higton we came to the conclusion it'd be best if I stayed in, especially with the weekend coming up - that way they can keep an eye on me. We're pretty sure it's just another chest infection. I've got my own hand held lung function machine and that read that my lung function had dropped from thursday - not sure how accurate it is but I think last time it wasn't far out.
Yesterday I had quite a lot of visitors which was really nice :) always cheers you up. At least I'm allowed my laptop, ipad, phone, any food, takeaways, dvds etc. Plus all the staff are LOVELY which makes it a lot easier. And knowing mum is only 5 mins round the corner is really reassuring. 
I did start to feel better yesterday but I think it was the adrenaline of seeing everyone, plus bit of a brave face. But yesterday evening about 9pm I was very short of breath again, felt awful. Tried a little walk but couldn't really manage. And this morning I've woken up feeling worse than when I came in!! I'm not breathing as quickly but I'm a lot tighter and feeling more 'yuck' which is really disheartening as I don't want to stay in here long, they originally said go home on Monday if I was feeling better, but now I'm feeling worse maybe I wont be. We'll see! 
I had a bit of a mini breakdown last night when everyone had gone home; why do IVs make me so bloody emotional?! This is my first hospital admission without Sammy. My lovely friend Samantha Morris passed away about about 10 months ago, whenever I was staying in she was always in too so we'd text or be sneaky and try to meet up in the corridor. The amount of times I have gone to my phone to text her, I even found myself beginning to type in her name at one point. It just all hit me - I didn't have my sidekick in the next room. The only reassuring thing is whilst I was a blubbering mess my little light flickered once..I swear! She must be keeping me safe whilst I'm in here..either that or trying to scare the doo-dah out of me knowing her! :) I then layed there in the dark thinking, & without wanting to sound morbid, I realised that this is life, it's not just some little thing that'll go away as I often try to convince myself & others. Hospitals. IVs. All of that. Yes I know I'm not in hospital often but at some point I probably will be..when I was a kid I always had this thing of 'it'll never happen to me' as I was always so healthy. But it's a times like these it's a bloody big reality shock that makes you realise that you are stuck with this and it may be ok for a while but it does come back, it will come back. 
Even when you're not as sick as people on the transplant list, but you're so out of breath just walking to the bathroom, transplant always crosses your mind, even if it's a distant thought for the future it's still there. Some fellow bloggers have had some really hurtful comments on their blogs when they've been open & honest like this, so if you don't like this sort of thing then just stop reading & go - I never usually write or talk about this sort of thing so it's taken quite a lot to do this - if you don't like it, lump it ;)
I'm just so thankful I have the most supportive family and friends around me because without them I wouldn't manage any of this. My mum is here everyday, nearly all day, and if I needed her at 3am because I felt worried I know she would be down without asking any questions.
Anyway, on to something slightly cheerier! My fave night nurse was on last night, Sue. She came in, gave me a massive hug and said she'd missed me. We always have such a laugh which really makes it so much easier as night times when you're feeling ill are horrible. I'm going to ask later if I can leave the hospital to go out for some dinner but the hospitals regulations have changed so I might not be able to! Maybe I should start digging a tunnel just in case ;) 
I'll keep you all up to date when I can, fingers crossed for getting out Monday so I can finish my IVs off at home!




Monday, 22 July 2013

Breathing comfortably is overrated anyway!

I've been feeling rough on and off for the past few weeks, but last weekend it really hit home. We'd been out for the day for mum's birthday..as we started walking around Arundel Castle and it's gardens I was getting pretty breathless and although I wanted to just go in a wheelchair, I was adamant I would walk around. Somehow I managed and we stopped off at the beach on the way home, the lovely salty sea air helped and I felt like I could get a better breath in. However as we left I soon went back to feeling shitty again.
In the evening we went out for dinner and at the start I was like I'd been all day, quite tired and a bit breathy but still carrying on like everything was fine but halfway through I just felt myself getting worse and worse. It's pretty damn scary when you can notice from minute to minute your breathing deteriorating. In the end I did tell mum how bad I was feeling and tried to calm myself down.  In the car on the way home I kept getting flashbacks of when I was really really poorly and just thinking that I didn't want to head back down that slippery slope. Instead of staying up till the early hours of the morning celebrating I got home and just fell asleep in bed, exhausted from the effort of breathing all day.
I'm feeling better than I was last weekend, although even now deep down I know my lungs are struggling.  I had that Monday off work and did lots of extra nebs, relaxed and just did nothing. This weekend just gone a similar thing happened and I just felt horrendous again. I know it's very hot but I feel like I have a temperature..it's a different feeling to 'just feeling hot from the weather'.
I've got hospital next Wednesday for a Kalydeco check up so I might speak to them about possibly starting some IVs for two weeks - although I am tempted to ring before then, possibly Wed after work to start some early if I feel worse. I'm feeling pretty dizzy and spaced out this evening so I'm not sure if my O2 levels are a bit dodgy so I'll see how I go and either call early or speak to them next week.
What winds me up is when people go 'ah but you're carrying on with everything you must be ok' I appreciate if I was VERY poorly I wouldn't be carrying on with things BUT just because I am doesn't mean I'm not finding it hard to breathe. I carry on because I want to and hate letting people down. All the time lately every breathe is feeling like a lot of effort - if I said every time something was a bit of a struggle people would think I was making it up..so what's the point in telling them? 

Only two more days left at work - a bonus to working in a school means 5 1/2 weeks of summer hols!

We'll see what happens and I'll update you next Wed :) Thanks guys & girls

Tuesday, 9 July 2013

Another angel gained her wings..'Transplant Week'

Sadly, yesterday, another gorgeous girl passed away.  Emma was only 20 years old and on the lung transplant list but unfortunately her lungs didn't come in time.  She was lovely and bubbly; so many of us are just devastated by the news. You can't ever seem to put in to words how you feel and each time another CF friend leaves you..it never gets 'easier' and you never 'get used to it' - each time it just cuts a bit deeper.
But also it opens up old wounds - every time a fellow CFer looses their battle, I ALWAYS think of my Sammy..to be honest, I think of her lot anyway, but at times like these I just want to cry and see her, be with her again and muck around, laugh and plan cocktails like we used to.

This week is TRANSPLANT WEEK - PLEASE PLEASE PLEASE sign up. There are never going to be 'too many organs'. Too many people like Emma are loosing their fight because lungs are not available often enough.  And it's not just lungs and CF patients.. people need heart transplants, eyes, livers, kidneys..
Just think - would YOU accept an organ if you needed one? If yes, then sign up..don't be hypocritical. It takes 2 minutes to type your name in, click which organs you want to donate and they send you your card. And make sure your family know your wishes. I have CF and I'm still on the register..my eyes, my heart..possibly liver or kidneys depending on their condition. You never know if you or a loved one will need a transplant, and how angry would you feel if that transplant couldn't happen because there weren't enough organs donated..you can't even imagine how that must feel to families and friends of those who don't make it. You can only be on the transplant list for so long until your body decides enough is enough. 

Transplants save lives. That's the end of it..your don't need your organs in Heaven so leave them down here and save peoples lives. 


http://www.organdonation.nhs.uk


PLEASE take two minutes of your time and save somebodies life. 

Monday, 24 June 2013

CF Awareness Week!

Each week five babies are born with CF and two people die waiting for a transplant.

So this week is Cystic Fibrosis Awareness Week and what better to start it off with than a blog post about it all! Don't worry I wont make it all dull and boring for you ;)

There are still waaaay too many people who either don't know what CF is or don't realise how serious it is - no we don't just sit around complaining about a cold! 

A few little things so you can get the basics!

. It's genetic; we're not contagious so don't worry! CF is there from birth (however you're not always diagnosed with it the second you're born! I was 3 months)
.There is NO cure (Kalydeco is very helpful to the 5% of us that can take it but it is still not a cure)
. Thick sticky mucus loves to block up pretty much everything in our bodies! This means that we get loads of chest infections - and these are pretty serious. One infection can make you spiral downwards to a place you can't get better from. It's not always a simple 'take these tablets for two weeks' - it can be MONTHS of grueling IV treatment, being unable to walk, eat, drink. It affects the digestive system meaning it's very hard to gain weight as we can't digest most of our food.
. It's not just the lungs and digestive system taking a bashing - the liver and kidneys also love to join in the action too and sometimes throw a wobbly..it takes the attention off the lungs I guess!
. There are so many treatments..tablets, nebulisers, physio, IVs, flutters, PEPs, injections..you name it, us CFers have probably had it! You can spend from 1 hour a day to 7 hours a day doing just treatments alone depending on how ill you are. 

Going to hospital usually consists of a lot of the following..check ups, x-rays, lung function tests, operations, annual reviews, bronchoscopies, blood tests, IV test doses, nebuliser test doses, physio sessions, various scans, doctors trying to figure out why your lung function wont go up despite IVs, rest, exercise (& you telling them they better start breathing properly or else!) and deep discussions about your future - such fun we go through! :) But it's fine - we're used to all the needles, tubes and medicines making us feel all strange! It doesn't necessarily make it any easier though.

And for some people there's transplant clinics on TOP of all that too (like we have more time to spare!)

CF can mean that one week you're feeling great and on top of the world and the next you're so out of breath you can't walk more than 10 steps, can't eat, can't talk and just feel like you can't carry on. I've been through that myself twice now and words can't even describe how bloody scary it is when you feel your life slipping away from you and it feels like there's fuck all you can do about it. And when you're sat in a hospital bed, on 24 hour oxygen with a lung function of 16% which is less air than in a coke can it's pretty hard when people think that you're 'moaning about a cold' or don't actually understand HOW sick you are.  

And it's not just physical stuff. Mentally, it's hard when you know inside you're fighting each day - some days are a lot easier than others when you're 'well' but still you can feel CF inside of you, there's always some little reminder. It's how you choose to act upon that that's the difference - you can sit there moaning EVERY day or you can get up and enjoy life for however long you have. 

It's hard having to cancel plans last minute because you're too exhausted to even move. Mentally..it can be quite tiring.  Not just worrying about yourself, about your future, about tomorrow, but worrying about those around you because you know their worrying about you too. But we try our best to carry on with a smile on our face because it makes life so much easier to tell people you're okay when actually you're not doing too great but it's not worth the hassle of explaining or you don't want people to think 'oh she's sick AGAIN'. 

We do have good times - Kalydeco is an amazing thing to happen (I have previously put a post up explaining all about that if you fancy a read!) and people are now living longer because of better treatments.


This is WHY we want more awareness of Cystic Fibrosis - we want people to realise what it is, what it does, but also hear about our success!! People who are getting transplants and doing really well - things like Kalydeco which have made so much difference to a lot of people's lives.  It's not all doom and gloom! Sometimes our lungs do actually behave, for a while at least :)


So please share my blog, donate to the CF trust and if you've managed to read to this point without falling asleep then thank you very much! https://www.cysticfibrosis.org.uk






Wednesday, 29 May 2013

I'm such a tit sometimes..

Nothing exciting has happened lately healthwise, CF things seemed to be ok apart from the odd dodgy day, everything going well :) So what silly old me do..fall over my own feet and possibly break my wrist! I went to A&E and the x-rayed it but said that the scaphoid bone in your wrist (the one they think I've fractured/broken) doesn't show up on an x-ray for 10 days! So since last Friday it's been stuck in a split - I can't cut up food, pour a drink, do my hair..you don't realise how much you use your hands! I'm back at the hospital this coming Tuesday (the 4th) so I'm REALLY hoping it's healed otherwise it'll be 6 weeks in a cast; no work, no driving (I was meant to have my first driving lesson yesterday but had to cancel because of this!) and I'll be bloody gutted.
Sunny walk by the canal
with Luci
So pleaaaaase cross your fingers, toes, eyes and all that, that this just heals up in the 10 days! 
I wish there was some dramatic story to go along with it like I had jumped in front of a bus to save a child but no, I just tripped over my own feet..I'm such a tit sometimes!

On another note, Paddy had a flush today and Judith said would I mind having my photo taken being given Kalydeco from her and the pharmacist? Of course not! So my face will be in Frimley Hospital's magazine and our CF unit newsletter along with a quote that I still need to give!



Getting on a pedalo with a
broken wrist - oh I do love
a challenge ;)
Also, I had an ultrasound today on my liver, kidneys, pancreas, stomach etc as part of an annual thing to make sure everything's going well. I went in and the doctor said 'oh I remember you - I did your ultrasound last year!!' How bizarre! Although it's never good when they say 'was your liver ok on last years scan?' although luckily he kept going back over it and it was fine *phew*

That's about it - let's hope this wrist decides to heal up quick..I'm already annoyed with just the splint on!






Tuesday, 30 April 2013

Meningitis scare & Kalydeco!

Hiya everyone :)
Everything's been pretty good lately so I've not really had much to blog about CF wise! On slight issue has been on Friday. I came out of work and realised I had a rash on my leg, got mum to have a look and see what she thought and as we pressed it, it didn't disappear (not a good sign - most rashes go away when you press with a glass/finger!) so we went to the GP to pick up prescriptions and asked on the off chance if a doctor was available and luckily there was or we would have had to have gone to A&E! So we went in and explained to him what it was, showed it and said that I felt fine.  It is NEVER good when a doctor looks at a rash and goes 'oh dear, now that does concern me a lot..' haha. He asked how I felt and I said that I've been absolutely fine, just have a rash on my leg! He said that if I was a little kid he would have rushed me straight to hospital as it looks exactly like meningitis but as I'm old enough to understand when I don't feel well and that I WAS feeling fine he then calmed down as with meningitis I'd be feeling VERY unwell and also the rash would be spreading quickly, which it wasn't.  So he said to go home and relax for the weekend - he couldn't say it wasn't meningitis just in case I woke up on Saturday feeling ill in which case I'd have to go to A&E. I drew round it so I could see if it had spread but it was fine and now it's pretty much gone! 
Bit of a panic though when a doctor mentions meningitis! 

Today I had clinic for a Kalydeco check up :) It went really well and my lung function had gone up even MORE - to 2.3 litres, figures I haven't seen for nearly 2 years!!! Dr Higton was very very pleased and didn't really have much else to do. Shelly took some bloods for me and gave Paddy a flush.  My next appointment is for three months time - yes, THREE months! I haven't had an appointment that far apart for well over a year! 




Lastly, the month of May is CF awareness month.. I will probably do a blog on it in a couple of days so please share and if you follow me on twitter, pretty please retweet some of my CF ramblings or tweet it yourself with the #cysticfibrosis #cysticfibrosisawareness hashtags! Thank you :) 







Wednesday, 10 April 2013

Quick update - MRI scan!

Just a quick update to let you all know what I've been up to! The doc said the MRI scan for my leg pain would come through in 6-8 weeks but strangely a few days after my appointment I had a phonecall from a hospital in Farnham saying that they could do it this week.  
Yesterday (tuesday) I went there and was a bit apprehensive as I knew it'd be quite small - I've had CT scans and they're fine as it's not too enclosed and there's space but when they started to push me in to the MRI tunnel I nearly had a bloody panic attack as it really is tiny!! There was about 3-4 inches between my nose and the top of the tunnel.  It didn't help that I had to have something placed over my head so that made it feel worse.  They put headphones on me as it is pretty loud, plus I could listen to Michael Buble although the machine was so noisey I couldn't really hear it. At first I kept swallowing as I was worried but then the guy said you can't do that as it makes the pictures blurry.  But I managed to go in for the 30-40minutes, trying to keep myself calm the whole way through as I was so claustrophobic! 
It's quite funny because people were saying that I'd had a lot worse done to me than just a scan but it felt so horrible because it was so small - it didn't hurt a bit.  At least if I'm having a bronchoscopy I'm sedated and all out of it so I don't have a clue what's happening! Anyway, that's all I have to say really, just a short update on that! I don't have an appointment until 30th April so that's good :) 

Thursday, 4 April 2013

So apparently I have 'unhappy nerves' & I'm going to be electrocuted..

Meg & I & the very
large cocktail
I've mentioned before about the mysterious leg pain that I randomly get and that for 7/8 years NO doctor has had a clue what the heck it is.  Just agonising pain.  Dr Ho referred me a while ago to a neurologist and today I had my appointment.  The doc seemed quite nice and we went through the usual background of my CF and medication list (which I'd printed off beforehand as I can't always remember the dosages of all of them!).  He did a reflex test on my arms and legs - for this I had to either push or resist with my arms/hands/legs/feet and he then pricked certain parts of them with a little needle to see if I could feel it.  He then used a two pronged fork thingy (technical term obviously ;)) to send little vibrations on my fingers and toes to first see if I could feel that but then I had to shut my eyes and tell him when it had stopped (when he held the two prongs it stopped vibrating). He also looked into the backs of my eyes. After all of that he said that usually women have a strong reflex in their legs compared to men, they aren't sure why, but mine were very strong so there could be a reason for that! 
All in all he said he also wasn't sure what on earth it could be! But he said he will book me in for a scan for my back to make sure that's okay but it takes 6-8weeks for that appointment to come through and also, has he put it, "we will electrocute you!" It's pretty much a test where they send electric shocks through your body starting low and getting higher to see how your reflex's react and how quickly it travels etc.  He said it can be quite painful but wont cause damage - so great, I'll be electrocuted! To be honest, I don't even care, I just want to get to the bottom of what the hell is wrong with my bloody legs!!!!!!


Meg, Me, Jess
Girls night out :)

I've had a busy couple of weeks as it was the last week of term at school (work) and then obviously it's Easter Holidays so I've been seeing friends and family.  I've got a few pictures of what I've been up to :)  I just with this weather would pick up.. it's the 4th April and it SNOWED today - that's just wrong! Please somebody send the sun to warm us up!
Have a lovely Easter break if you're lucky enough to either be in school or work in a school and if not, have a lovely weekend tomorrow! 

My little cousin Livvy & me on
Easter Sunday


Thursday, 21 March 2013

"You know things are bad when.." Plus Kalydeco!

You know things are bad when the children you work with at school ask if you're okay because you keep coughing and tell you that you should probably go to hospital to get it checked out! Hahaha, bless them. At least they care!


Mine are usually between the 35%-63%. So when us
CFers say we find it hard to breathe, we really DO
find it hard to breathe!
Yesterday it was time for my 6 week sweat test to see if Kalydeco has reduced my salt levels - mine were pretty high before at 160! So I popped to hospital for the test which all went fine, I don't know the results yet but Judith said even if for some reason my salt levels weren't down it's fine as long as my lung function has improved which it had done..all the way to 2.1 litres which is 66% as my letter that I received today said.  
The only thing is that the past two weeks I have had this horrendous chesty cough! It wont go away - I had a high temperature for a week which then just disappeared and apart from feeling tired, I feel okay in myself..just a nasty chesty cough. So it's good that I'm feeling not too bad but need to shift this.  When I was at hospital yesterday they gave me some co-amoxyclav oral antibiotics for two weeks, so we'll see if they do anything although they're making me feel really sick (yay for antisickness tablets) and last time did nothing - but at least it's not IVs so I'm very happy to try them again! :)

I thought I'd see what my lung function was on my machine at home last weekend and it was down to 1.6.....shit. I'm guessing it's probably a temporary blip as this chesty cough is making me very tight chested and it's so rattly that I almost feel like I'm drowning in pleghm sometimes - lovely mental image for you there ;) But for some reason I've had a couple of panic attacks again..where the hell are they coming from?! The worst when it felt like someone was genuinely pushing down really hard on my chest, it wasn't just tight I actually felt the pressure for about 15 minutes and it was HORRIBLE and then caused me to hyperventilate and panic etc. Just need a bit of a slap don't I!


Me and Meg sharing a cocktail!
Last Monday I saw Alex for a while for a girly catch up with wine and malteasers! And then I saw Marianne & Meg for a loooovely Mexican meal out last week too which was delicious and lovely to catch up. And tonight Steph is coming over for dinner which'll be lovely so I better get cooking! 
And over the next few weeks I'll have my lovely uni friends coming back for Easter holidays! So I cannot WAIT to see them :) much needed long overdue catch up! Plus it means that I get Tom home for three whole weeks which is going to be amazing!

On 30th April I have my lung function tested for the Kalydeco tests so fingers crossed it's all back up by then!