Long time no see..

It's been a good couple of months since I've updated my blog! I've just been busy at work, busy doing things out of work..I guess it's a good thing, eh?! 

Been feeling pretty good chest wise which is lovely - the odd rubbish day where my lungs just don't fancy playing ball but on the whole everything is pretty grand. 

I really need to get back in to writing my blog, once a week or once every couple of weeks. 

I think the main things to say about, is that my health seems to be good at the moment, I'm always happy and smiling, I've managed to avoid IVs for a few months which is fab and the not so good news is that it's nearly the end of the summer holidays! Back to work it is next week..

I had a check up at the hospital today - lung function is a little down but nothing worth panicking over yet..on Monday the little lungs struggled quite a bit but it seems to have eased so hopefully I can make it till the end of September before I need IVs..that would be perfect! 

I've had a couple of days where I've had all day hypos; my blood sugars just wouldn't stay up. Mentioned it today but they said if its only a day here and there to just keep an eye on it and go to A&E if they drop too low.

A few weeks ago I asked for my iron levels to be checked as I've been feeling very faint a lot, looking pale, bit of out of it and my balance is completely sqiuffed - I'm constantly falling in to things and injuring myself! Dr Orchard had a look today and said that I was correct and they are low so I'm booked in for an iron transfusion next Monday..not the most fun way of spending my last day of holiday I must say! Iron infusions aren't pleasant..not very nice side effects so the nurses sit with you for a while and then check back a lot.

Big news I guess is that I've finally passed my driving test! First time too! Was very surprised and very happy with that so now I'm driving Marvin around.

That's all I've got to say really - everything seems to be good at the moment so fingers crossed this iron infusion does the trick and hopefully my lungs can hold out for another month before I need IVs!

Oh..and I promise to try and update my blog more regularly again!

Precautions

Hey everyone, I've been feeling really good lately so haven't been blogging! So busy with lots of various things!
The past few days I've started to feel a bit groggy. For a few weeks chest has been quite up and down and it's hard to tell whether it's just the hot weather or hay fever or an infection but since about Sunday I've had temperatures (not crazy high about 37.8) in the evenings, been feeling very tired, headachey and just that general 'not feeling well' feeling that's a bit hard to explain. Next week I've got a very busy week workwise so I thought I'd give the hospital a ring today to ask for some oral abx as a precaution and hopefully to tide me over the next couple of weeks. I'm hoping this will be enough of a boost as I really don't want IVs right now! They've given me Augmentin which I'm usually okay on apart from nausea but I've got lots of ondansetron in the cupboard for that! Hoping they do the trick..
Fingers crossed eh?
Everything else seems to be going well at the moment - I'm really happy, relaxing more which I really needed to do. My gorgeous little cousin had her 5th birthday last week and my Grandad had his 80th the week before - both such lovely days spent with the family :) there's a few pictures on here from the days.
Counting down until summer holidays, not too much longer now. Let's hope this lovely weather stays, top up the vitamin D!
Enjoy the rest of the week and the weekend, I'm sure I'll update soon :)













































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First combined clinic, CFRD & CF

For those who don't know, CFRD means Cystic Fibrosis Related Diabetes. It's slightly different to type 1 and 2 - we just like to be awkward! Today was my diabetic and lung checkup - they've changed it so there's a diabetic doctor and nurse who come to the unit on one of your normal clinics so I don't have to book another appointment somewhere else in the hospital! Much easier.
Lung function was down a little, but we're not worried about it, just something to keep an eye on. Dr Orchard was pretty happy with how everything has been going, especially as when I last saw him a couple of months ago my lung function had dropped to 30% so he was quite concerned - today was a better picture :-) mentioned about my leg pains as I do to pretty much every medical professional I see on the off chance one of them says 'oh I know EXACTLY what that is, here let's do this to stop it!' But no such luck, like everybody else he says there's probably nothing that can be done.
The diabetic consultant was happy with my bloods are they're pretty well controlled at the moment, just the odd high. I mentioned that I've been struggling with lows lately, usually between 3-6pm but sometimes at 11pmish. He said it can't be due to my insulin as I only have a small amount before my main meal in the evening so that's out of my system in about 4 hours. They suggested changing my lunchtime foods by having long lasting carbohydrates instead of quick ones - for example swap white bread for brown. So I'm going to try that and they said if that has no effect they will arrange with my CF drs to have a steroid test done as I used to be on a lot of steroids and apparently if my body isn't producing enough of their own, it has an affect on blood glucose levels so may be a reason. Failing that I may just need to snack a little more! Always a good excuse for a choccie biscuit ;)

That's mainly it, quick update as nothing too major has been going on. It's been lovely getting out in the sun the past couple of days, makes you feel a lot better! The students are on half term next week which means a week off for me..yay! :-)
Bikini modelling CF style.....?













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CF awareness month

I appreciate this may be quite a long post but please just take 5 or 10 minutes out of your day to read, sign up to become an organ donor and to donate money to the CF trust. 

'But you're wearing make up - you must be feeling healthy'
'You look fine..' 
'How do you need THAT many tablets?' 
'I didn't realise you had to do nebulisers, physio and all those treatments every single day..' 
'IVs and hospital can't be that bad surely' 
'I'm on two weeks of antibiotics, I know how you feel - I feel like death on them'

We hear these things all the time, purely because people aren't CF aware. I don't tend to tell everyone how many treatments I do, how many times I do them, how often I feel unwell or how things affect me because you don't want to either bore people or seem like a moaning minny. Even when sick on IVs, feeling really ill and exhausted I've still gone out to see friends or family, even if its just for a couple of hours but because you've left the house people assume you feel absolutely fine - it can be quite easy to slap on a smile and say you're feeling alright when the truth is that you feel horrendous.

Try to imagine this - you take a breath in, but it's not a normal breath like usual..you get the smallest bit of air in and you realise that's the most your lungs will allow you to take. You struggle to walk to the next room to get a nebuliser that may make your breathing a little bit easier for a tiny bit of time. Your head is spinning and hurting from the constant coughing and sometimes low oxygen levels, your lungs feel like they're crushed and it feels like you're drowning. Your temperature is sky high so you're sweaty but cold and shaking. The IVs you're on are making you so so sick and grumpy but you know without them you'd be even worse chest wise. IV time comes and you can spend an hour and a half doing them, watching them go into you knowing that you're going to feel even more sick any minute but praying they help the infection thats raging in your already tired lungs. If you're lucky you have someone at home with you who can help get things, do things but some people don't have anyone there so have to struggle on by themselves whilst feeling like this. 
Most of you reading this will probably never feel this feeling. The terrifying feeling when it's the middle of the night, you're coughing all the time and literally gasping for every single breath. The panic that goes through you as you think 'I need to get more air in'. With every single infection comes more scarring, more lung damage.
We may recover from an infection but that does not mean its not damaged us. There is always a fear with each bad patch that you will not get through it this time.

CF is the countless tablets we take every day, with every single meal or snack we need Creon to help digest our food. Nebulisers every single day - when I'm 'well' I take about 4-5 a day, but when I'm ill I can end up taking around 9-12.  We have to do physio - either percussion where someone pats on your chest, back and sides to try to shift the sticky mucus that is inside the lungs or you can do various breathing exercises and huffs. 
And then when you're poorly and on IVs you realise that you spend most of your day doing treatments. IVs can be three times a day, 1 and a half hours each time (can be longer or shorter) and at 6am that's not pleasant! Operations, bronchoscopies, chest drains, cannulas, lines, ports, blood tests, X-rays, lung function tests, exercise tests, chats with every medical professional under the sun - all of these things can happen.

The feeling of worry when you wonder if you'll manage to walk around the shop, the feeling of dread when you know it's going to be uncomfortable and well result in major coughing fits with half the public raising eyebrows and staring at you - I swear sometimes if I walked around a shop in my underwear I'd get less looks than when I'm coughing! Not willing to try it mind you…! Supermarkets are the worst culprits as they have chilled isles and the cold air really just sets you off.

There are other complications too - CF doesn't affect the lungs..oh no, that would be far too simple. The pancreas is pretty damn lazy, hence the creon tablets with every food but this also can bring on CF related diabetes (which I have). The picture shows all the various ways it can affect us. 

CF can also affect you mentally as well as physically. As you grow up, thinking about your own mortality isn't exactly what you had in mind. But we have to face this, especially when ill it's going to cross your mind. Seeing close friends struggle and pass away just breaks your heart but everyone sticks together to get through it. It hurts to make plans with friends to then just feel too sick to go out and have to cancel - seeing them all have fun whilst you're laying in a hospital bed or at home, struggling for breath and just wishing you could be there. It must be nice not having that worry and anxiety of 'can I walk that far' or 'If I want to go out I need to rest up all day so I can manage it'.  The anxiety is horrible - when I'm on IVs I get quite a lot of panic attacks, I still get some when I'm not on IVs but not as often. With having so many friends go through this and not make it, it makes you realise that you just have no control over things and the anxiety and sadness can spread to other areas of your life.  Some of the medications can make you feel incredibly down or on edge too which doesn't really help matters! Again, people assume just because you're not going on about it on twitter or Facebook etc saying how hard things can be that you're absolutely fine. Maybe we should write a status every time we take a tablet, do a neb, do treatments, feel down, feel anxious, feel sick. 

I'm so lucky that I have a very understanding family and group of friends but there are always going to be people that just don't get it, just think you're making it up. Don't understand how one day you can walk around, feel pretty good, yet two days later you're struggling and need IVs. I seem to go downhill pretty quickly in the past few years but luckily can perk back up.

A lot of people I've spoken to lately assume that if you have CF you are always on the transplant list - you aren't. You only go for assessment when you're very sick..there would be no point in having a transplant when you're lung function is in the 60% range as the risk of the op would be too great. The main issue is that there are not enough lungs available for those who need a transplant. You can't just have any lungs, it has to be a match. Some people can be listed for a week and get their lungs, some people a few years and some people may never get their chance of a second life. I know I've banged on about it a million times before so to shut me up just go and sign up to become an organ donor. If your closest friend or family member or even yourself needed an organ you would be begging people to sign up.

A few years ago when I was 18 I had 16% lung function, I couldn't walk or eat or do anything. My doctor said my body was shutting itself down as my Mum wheeled me in to the hospital and it was the scariest time of my life as I just lay there helpless waiting for them to help me breathe. Luckily my doctor at the time did everything he could and although it took months and months I got my weight and lung function right back up to where it should be. But those months felt like years - I was on IVs for pretty much a whole year. I would force myself to eat because I didn't want a peg (a button and tube that goes in to your stomach - CFers connect it up to a feed overnight if they find it hard to eat or gain weight). Not knowing if you're going to get any better is a horrible thought but you push on with the hope.

A few quick CF facts:
There is no cure
1 in 25 carries the faulty gene
Each week 5 babies are born with CF and 2 people die
It is not catching 
Everyone with CF is affected differently - even siblings

I'm sat here trying to think of what I've missed out. There are tonnes of facts and figures I could give you but I'm pretty sure I've done that before so I thought giving a perspective of what CF feels like would be different for a change although it does all seem a bit of a ramble - maybe thats because I've read it too many times! 

If you've got this far then thank you, please share this blog..we want to raise as much awareness as possible. CF is a part of me, it doesn't define me. And without it I wouldn't have some incredible bonds with some wonderful people, I wouldn't be grateful for breathing, I wouldn't take each day as it comes and I wouldn't be as strong as I am now. 


Donate to the CF trust

Sign up to become an organ donor

Half way through..

Quick gripper change today which means I'm halfway through this course of IVs - hopefully won't need anymore after the two weeks. Starting to feel a bit better. Had a few rough evenings the past few days where all the gunk in my lungs has been so thick & there's been so much that I'd have huge coughing fits where I just felt like my lungs were closing in and in. It was pretty scary as each time I tried to take a deep breath in to cough even more it just blocked from the gunk. Seems to happen in the evenings more so than the days now and is starting to get easier which is always a good sign :-)
This round of IVs have made me feel very very rough..headaches, dizziness, feeling so exhausted that I'm having to sleep after doing things and at one point they were making me throw up too so I've started taking my antisickness half hour before them which hasn't cured all the nausea but has stopped the actual sicky bit thank God! Managing to walk around easier now and do a more.
I'm determined after this lot of IVs to get in to shape and also to start feeling better about myself. Really need to boost my confidence & think more positively (however cheesy that sounds!)
Hospital is next Wednesday so fingers crossed that all is grand & I can finish this course..I'll keep you posted :-)



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Needing a boost

I mentioned in my last blog that I wasn't doing too well and that IVs may be on the horizon..
Oh how I wish I was wrong sometimes. I didn't exactly realise how bad I'd got. The problem is with me is that I tend to go from okay to loosing quite a bit of lung function very quickly. I had my appointment today and my lung function has declined quite a lot, down to 1.1 litres (about 30%) which really isn't very good at all. A new dr has started at the unit so I met him today - he was lovely so that's nice :-) I mentioned about my blood sugars going high, temp up etc..all usual signs of having an infection. Add my crap lung function into the mix and it was no wonder IVs were heading my way!
Luckily, he's agreed to let me do them at home where I'm happier and more comfortable. If things get even worse then maybe I'll have to stay in or meds could be added to the mix so here's hoping things start to improve.
People don't realise how tiring just trying to breathe can be..when you're puffing and panting away it takes so much energy plus the IVs don't help either. I would love to have some people feel how it feels right now because I swear most people you tell think you're just a bit tight chested and are making a deal out of it & that you'll just get better at some point. But with every infection comes more permanent damage.

I'm starting to get quite fed up of being ill pretty much every holiday break we get from work - whether it be half terms or Easter, Christmas, summer - I seem to end up on IVs, have bad stomach problems or a delightful combination of the two!

Lately I've been suffering with what I can only describe as odd travel sickness headaches but without travelling. My head hurts but not a lot, just feels all fuzzy and sore especially at the front and sides, I feel very sick with it plus quite dizzy. I get it randomly so mentioned it to Judith who said it sounds like low sats by they seem to be okay at the moment so she wondered if they may be dropping when I'm doing things or if it's just because the infection making me feel rough. So we're seeing how it goes and if it's no better after the IVs finish we'll investigate further.

First delivery of IVs tomorrow - that's the pain with being on mero as it means waiting in for deliveries every two days.
I'm going to relax for the rest of the evening with a good book & a cuppa :-)



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Easter holidays

It can be hard to explain to someone how it feels when your lungs aren't quite playing ball. Right now I feel as though I'm in some sort of bubble and each day it's getting smaller and smaller as my lungs get tighter and tighter. Hopefully that bizarre imagery will make some sort of sense with a few of you! I barely slept last night and the past few days I've just not stopped coughing - that, teamed up with a really tight chest and plenty of crackles, just kept me up for hours despite being shattered. I did wonder if it was the Sahara dust and pollution that was over on Thursday but that's all gone now and I'm still feeling rough breathing wise. I've got a cold so keeping an eye on things for the next couple of days..I just really don't want to have to spend the Easter holidays on IVs but then at the same time I don't want to end up very poorly! I know I've got to ring Judith on Monday to book myself in for a port flush & I know if I go I'm sounding like this they'll mention IVs so I'm hoping it all clears up by then.

Guess what! I've finally been out driving in my own car - I know I've had it for quite a while but I ended up having three months off driving lessons as I kept getting sick. It's such a comfortable car to drive (a Mini Countryman). I'm back having lessons at the moment but hopefully will be able to take my test soon so I can start getting myself places rather than feeling bad for relying on lifts all the time!

Easter holidays mean two weeks off :-) (for those who don't know, I work in a school for children with Autism) I don't have much planned, just a few lunches out, visiting places, seeing people. It's nice just not having to worry about setting an alarm for work and doing what you fancy. Let's see if these lungs sort themselves out because feeling like you're going to collapse every time you cough is wearing a bit thin! Have a lovely Sunday :-)


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Organ donation

Nobody can prepare you what it's like when someone dies, nobody can explain how it actually feels.
This past month there have been a lot of CFers gain their angel wings, the latest being the gorgeous Kerry Thorpe. Kerry was 23..what sort of age is that for somebody to die? She fought so so hard but unfortunately her body was tired of fighting. Her story is so inspiring and is exactly why you need to sign up to the organ donation register - get your family doing it, get your friends doing it, get anyone. I know it's been said a million times but you don't know when you or a loved one will need an organ.

I know people are busy and I don't expect you to give up hours of your time. But please, just sit there for one minute and really think hard. Imagine being in so much pain, unable to do anything, fighting so hard and wishing your second chance at life would come. Now think about the other perspective - your world being torn apart as you've seen your partner, parent, sibling, friend, go through agony for so long to then reach the end with no organs available, there's nothing anyone can do and you're left without them in your life.
I know that is blunt and horrible to think about but this is the reality of things. This is why it is vital you sign up to become an organ donor AND let your loved ones know you're wishes. People with rare blood types find it even harder to get organs so if more people sign up then surely there's more chance of them getting a match.
You can choose to donate any of the organs on the list, all of them or just one or a few. The more the better but the choice is yours. I've signed up on the internet and it genuinely only takes 2-3minutes to complete.
If one person signs up and two people who sign up who each tell another two people then hopefully it will get more and more people becoming organ donors. I know it's not nice thinking about what you want to do at the end of your life but just think that you could be the person that somebody thanks and thinks of everyday because your lungs, kidney or liver have saved their life.

It's really hard to cope when you hear that another CFer has passed away. Even if you didn't know them personally it hits home, especially if you've been following their story. It makes you think about your friends who are already up there, think of that person and their battle, think about their families who must be going through hell right now and to be honest once all the sadness has eased you think about your own mortality. I never really considered it much as a kid, I was pretty healthy with no major issues so why would I? When I was very very sick a couple of years ago I wasn't sure how much longer I'd be here for..that thought did cross my mind a lot laying that hospital bed on o2 and unable to barely eat, drink or talk as I didn't have the breath in me. Now I'm on Kalydeco I'm doing much better than that, however I still have rough patches and sometimes I do sit there and just wonder what is going to happen in the future - will I need a transplant? Will I become really poorly again anytime soon? But seeing as I can't see the future, however handy that may be, those questions will just be unanswered until a later date so it's pointless thinking or worrying at the moment!
It really helps that there's a big CF support group and when someone does loose their battle we do all chat, make sure each other are okay and offer support for those closest to the person.

Please sign up to become an organ donor and share this link with others
https://www.organdonation.nhs.uk




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Big update!

Sorry I haven't blogged for quite a while - I just feel like I've been so busy with one thing or another for the past month that there are so many things I need to get done and not enough time to do them all. Quite a few various things to mention and update you on!

1. In half term (I work in a school for children with Autism for those of you who don't know) I had another stomach blockage so spent the week at home feeling crap. The first day it started the stomach pain was excruciating - I was just in a pile on the floor in tears and just couldn't move because of the pain. We debated A&E although I have medication for it in the house so I wasn't too sure what else they could do for me so took some of the meds and painkillers & had an early night. Not exactly what I wanted although I suppose at least I didn't need to have any time off work.

2. My bedroom is finally finished - I absolutely love it! It was definitely worth the wait and the saving :-) Massive thank you to my Dad who helped paint it, build the furniture etc.

3. Last week I had my annual review follow up appointment. It was okay although it could have been better.  My lung function and weight have dropped although I'm not too worried about that at the moment - just hoping it doesn't continue to fall. Dr Higton said my vitamin D levels are VERY low and despite being on two tablets for it already they're going to add in a third to see if it helps and repeat bloods in three months. If there's not change there are other treatments they can use. Due to this my bone health has suffered and my latest Dexa scan showed Osteopenia which means my bone density is getting low.  Apparently you can't really get the density to go up much once you've lost it although with exercise plus the extra vitamin D tablets it can either stay stable or increase a little bit.  
I've never suffered with my kidneys but Dr Higton has said that the latest blood tests show that they're leaking and are starting to show signs of wear and tear! Unfortunately the diabetes and the IVs both can damage your kidneys so there's not much I can do about it apart from keeping an eye on it with blood tests and then adding in a treatment plan if they get worse. 
Other issues were discussed and things sorted out. 

4. My lovely friend Sammie got married! It was a wonderful day and she looked beautiful - I did get a tad emotional as she walked down the isle and when her hubby made his speech! So here's a big congratulations to Mr & Mrs Fletcher :-)

5. I currently sound like a 50 year old smoker - feeling okay in myself but my cough just sounds awful and in the evenings I'm getting very tight chested & temp is up..I'm keeping an eye on it for a few days in case it's just plugs moving around but if I start to feel poorly or my breathing gets worse I think a trip to the hospital will be in order - trying to see if I can make it till the Easter hols in case I need IVs but hopefully this'll just quieten down.

This weekend I'm off to see London Irish play Bath (rugby) for the St Patrick's day match - I can't wait!
Have a lovely weekend :-)

Dear Body..

A little note to my body..

Why is it that every time I get a break from work, all be it a half term holiday, Christmas or summer, I am ill? I know you spice it up a bit with some variety - crappy lungs, a stomach blockage, a cold, migraines, a weird IV/tablet reaction or even all of the above! However, it really is not appreciated. I work bloody hard and I would quite like to enjoy the time I get off rather than spending half of it, if not all of it, poorly with one thing or another.
Please sort it out - thank you :-)






Two days ago I had the worst blockage pain ever, debated a&e as I was on a heap on the floor in tears unable to move but after a while it started to ease so I thought I'd try and wait until Monday so I could talk to my team. Luckily today it's a lot better, still an awful stomach ache and I'm not wanting much to eat but the pain is more manageable.

Now that's all done and dusted I can finally move on to some good news - I am finally redoing my bedroom! Dads doing most of the work for the moment as it's stripping the room, plastering, sorting out & radiator bits and bobs but I'll help once it gets to the painting and decorating :-)
I've chosen some lovely wallpaper for one of the walls, paint on all the rest. Hopefully within a couple of weeks it will all be completed and I can move back in there - I'm in the spare room for the moment.
I'll pop up some pictures once it's all finished :-)

It's half term this week so a week off from work, spending the first half at home with this blockage but hopefully by the middle of the week it'll sort itself out so I can at least enjoy the last half of the week!




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Annual review

It's that time of year again, annual review time. On the surface everything seemed to go pretty well! Lung function was around 2.3l which I was surprised about and my weight is still stable.
Even better news, it turns out I've grown a cm since last year, haha did not expect that at all! (Still a bit of a short arse though!)
Had all the usual chats with the physio, dietician and everyone. Nearly ended up in a&e doing the step test as me (being the eegit I am) slipped off the step..luckily I managed to regain my balance before I landed on the floor! I did chat to the physio about my back as I've had bad back pain a lot lately. She thinks it's due to the fact my hamstrings are sooo tight and then I'm coughing which makes the middle of my back tight so the lower back is compensating for it all. She gave me a few exercises to try and help but if not she can refer to a different physio.
One bonus this year is I didn't burst in to tears when we had to have the hard talk - I could see Brenda didn't like asking the questions. I don't think anybody wants to think about you being at end stage CF, but chats have to be had. They ask you about transplant, if you'd want one etc, plans for end of life care - stuff I do think about, especially when I'm ill, but I'm never that worried about me, it's more about how everyone else will feel. I find that with cf, I'm more worried about how it affects everyone else emotionally and physically more so than myself.
Other things were discussed & luckily I had an X-Ray two weeks ago as I was having awful chest pain so didn't need another one - nothing showed up on the previous one as being a major issue so we think the pain may have been plugs moving around.
I'll be waiting the next few weeks for sputum and blood results to come back but I don't think I'm growing anything bizarre!
I was only there for about 3 1/2 hours, not bad really. Maybe it's just me but I always find it tiring, mentally and physically, so I had nice long sleep and a cake when I got home!

Everything seems to be okay at the moment, got a bit of a sore throat & headaches going on! I bought this gorgeous pillow mist from Champneys, ever since I've been sleeping a lot better, it smells incredible!



There are no words to explain how much I love my Mum. She comes to every appointment, is always there for whenever I'm down and knows just what to say. It's the little things too like sending me a little quote or having a surprise cake for after work. She stays up all night with me when I'm poorly, helps with my IVs, makes me laugh when I can't find a reason to laugh & is just all round amazing :-)



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My 21st!

I celebrated my 21st birthday at Pennyhill Park - an evening of champagne, canapés and cake! And what better excuse than your 21st to wear a full length sequin dress? ;) my lovely friend Charlie came down from Manchester to come to my party so we spent the whole weekend together which was fab!
I'm so lucky to have such thoughtful, caring, loving and amazing family and friends :-)












































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