Thursday, 10 November 2011

Midlands Today & The Sentinel Newspaper!

Well i waiting a few days for BBC Iplayer to have the video of the Campaign hitting the news, but no such luck, so i've done some dodgy filming using my phone on the tv!

The First Episode was aired on 5th November at 12.10am

The Second Episode was aired on 5th November at 5.45pm

I was so nervous watching, i have lots of niggly things that i would change about my interview but it went really well overall.  Was kind of exciting being on the TV even though i did kind of watch myself from behind a pillow.

The Campaign day went really well, i want to thank Chris for planning it all, he did a great job, as really all i did this time was turn up because I was in hospital!

Like i said in my last blog we started off on the radio and then we had a small pieceful protest on the A34 outside the hospital.  There was about 35 of us turned up and we had some banners and posters.

We had a really good day and it really made a the hospital realise that we are not going to go away, we will continue to fight for what we deserve!!

Saturday, 5 November 2011

Radio Stoke!!

Fighting for a Dedicated CF Unit!!!

This morning I was on Radio Stoke at 8am!!

If you have a listen it 2hrs 5mins!!

We have an article on BBC website too!!

So far been an exciting day, we held a peaceful protest outside the hospital with about 30 people attending to help prove that we're not going away and we will keep fighting for what we need!

Will put links for Midlands today and photos as soon as I have them!!


Friday, 4 November 2011

Exciting Morning as Midlands Today Pop Round!!
Well the CF Unit @ UHNS Campaign is about to make it's appearance on TV this weekend!! 

This weekend the University Hospital of North Staffs open their doors to the 400 million pound hospital building and the first patients to move in are the respiratory patients!! So we've had a couple of banners done and we were planning just a quiet peaceful protest just to show the hospital board that we are not going away and are going to continue to fight for a CF Unit!

Seems that the hospital had also invited Midlands today down and they wanted the story to be about their new super hospital and the first patients walking in, but now the news want our story more!! Which is great for us!! Sad for the hospital! But hey they shouldn't of promised us a CF Unit for years and years and then taken it away from us without so much as a real explanation.

So Midlands Today sent a Camera Man and Reporter Lindsay Doyle have been to my house this morning and interviewed me and my partner in crime Chris Hall (CF parent) as the Campaign leaders and asked us why we need a CF Unit at the hospital!

I was really nervous in the interview, didn't know what to wear or anything, but like usual once my mouth opens the important stuff seems to roll off my tongue! Chris did really well explaining our need for a unit and all the hospital broken promises and mine interview was the cf perspective!

Today as a CF patient attending the hospital i've received a letter and i'm presuming all the other patients have too about the CF patients care been moved from ward 79 to the new ward 233.  It states that we will have 4 side rooms which will be fitted with additional facilities to improve comfort whilst cf's are inpatients and two of these rooms will be ring fenced for CF patients.  It goes on to say that the directorate team would like to apologise that this is not a dedicated unit that we were hoping for but assure us it will be a positive move for the CF service.

While all this sounds good and it's a damn site better that what we have been faced with previously on Ward 79 it a positive step and it's in the right direction and it just goes to show what we can get if we just fight for what we deserve! Back in June when we started this campaign the move to 233 was going to happen and adult CF patients hadn't really been a factor on their priority list, now since this campaign was launched, after many meetings that Chris and I have attended with Nicole and Stuart Sutton helping out too by attending meetings we have pushed for better facilities and quality of care things have started to change! They have held CF training days for the staff too, its just unfortunate that half our staff aren't guaranteed a job on our ward and will find out their fate in January next year as they will move with us on a temporary basis.

So we just keep fighting and we will get there, tomorrow the hospital hopefully will realize how serious we are about this campaign and if we have a good turn out of people to help us with our banners they'll realize there new super hospital ain't so super without a dedicated CF Unit for the super duper CF patients!!

The Midlands today TV interviews will be on the lunch time show! 12.10pm and the follow up in the evening at 5.45pm for the protest at the hospital.  Please watch us!! I will be watching myself under a pillow i think!! lol x

Chris and I will also be on Radio Stoke at 8am tomorrow morning (Saturday 5th November) 94.6FM

So tomorrow's a big day!! Lets hope its a success!!

For more information on our campaign visit


IV's Finished, Dnase Started, Lung Function Up! Woo hoo!!

Well i've been home for a week now for out of hospital last Friday, a week last Tuesday after my frustrations i was given an extra week of Iv's Ceft and Meropenim and the DNase was actually started!! The IV's have dried my little lungs up which is good, i don't constantly feel like i'm choking on sputum! The DNase i can feel is working because the sputum i'm now coughing up is a lot thinner!! I'm trying to drink my water, which is easier said than done to a Tea lover! But i am trying, I went back to work on Wednesday & Thursday so instead of my normal bottle of Coke i keep in staff room i took water!! So that's a start and i'm trying to drink water in the evening! My mouth is really dry because of the Meropenim making the Thrush in my mouth really sore.  But with the bottles of Nystatin as my best friend hopefully that will get better fast now the drugs have finished.  My lung function on Tuesday was for me a very exciting 42% the best it had been all year so i'm pretty happy with that just hope i can keep it up, i really felt the difference after 2 or 3 days of the Meropenim, fingers crossed this feeling lasts, i'd really like not to have any more ivs this year! I have so much going on, i'd just like to enjoy my life for a little while!!

I just struggle with this whole idea of Dnase needing to be had 1hr before you have other nebs and physio, i'm actually feeling the benefits of the Dnase around 8pm at night!! Other than this silly tickly cough it give ya! But Emma told me to take Piriton to help with that and it does actually do the trick!! My mornings when i go to work i was struggling enough to do my nebs and acapella, now with the extra hour before hand it's a routine of dragging my ass out of bed and downstairs for half 9 at latest in order to fit it all in.  I know some of you would be like half 9 wow what's she complaining about, that's a well good lie in, but i don't function without a good 9-10 hours sleep and when your awake most nights because of feeds or coughing it's hardly a restful nights sleep most the time.

For some reason my hospital won't give me an E-flow for my Dnase until i prove my compliance with the Dnase and also because i will only be using it for the Dnase because I prefer my Salbutamol and Hypetonic Saline 6% through my ultra sonic neb they said they couldn't justify the cost, against another patient who would use the nebuliser more!  My arguement to this one was well if u don't let me try an E-flow then how will i know if i prefer to have my other nebs through it too!! N also my friends Emma and Aaron both said that they were given the E-flow initially for their Dnase and then they started using other nebs through it afterwards!! So why not me!! Yes i'm not the best with nebs in the past, i hate the buggars to be honest, but now i've got to the point in my life where i can't just choose to do them when i'm not well, i have to do them on a daily basis to function.

I just wish that these nurses and physio's could live a week in our lives, a day wouldn't be enough! Then they'd realise how hard it is to fit all this in and find a balance to have a normal life too!! It's alright in morning when your biggest worry is what to have for breakfast!! It's so frustrating that they work with CF's every single day and still just don't get it!!

On plus side on 23rd Novemeber i'm going to Manchester, Wythenshawe Hospital to see Professor Webb for a second opinion on my care and medication!! I'm have 12 iv courses since Jan 2010 and i don't think they all been necessary, some i've had before holidays but they just don't seem to do much! It works out that every other month i've been on iv's and most of them have been for longer than the 14 days, some 3/4 weeks and once even 6weeks.  I know there are other CF's so much worse of with me but we all have to fight for ourselves at the end of the day and i'm hoping they can just look at things and try and give some alternatives to help me feel better and stay off IV's for longer! Fingers Crossed!! xx