It's been 2 months since i last wrote on my blog!! To say it's been busy, stressful time is pretty much an understatement. I don't know what's happened to my life in this last few months. Some things i'm ready to talk about now others i don't think i'll be ready for a long time so you'll have to bare with me if u read this and feel like i'm hiding something, cause I am.
Last time i wrote my blog in December i was telling you i had decided to move my CF Care to Wythenshaw Hospital. Well the process was very slow, seems admin can't write letters very fast. I hoped it would all be ready so it would be new year new start. But on 4th Jan Wythenshaw still hadn't recieved the letter and i felt really poorly so i ended up been admitted to Stoke in the new building that the respiratory wards had moved to!
I guess it gave me a chance to check out the new facilities on Ward 233 for myself, all i can say is bigger is not always better, the new respiratory ward has 32 beds for all respiratory patients and 16 of them are side rooms which is a huge inprovement from the 3/4 side rooms we had access to on Ward 79. The walk to the ward when you're poorly is exhausting, the length of the ward is ridiculous and it's not just the patients who find that, the staff are shattered after the shift, the ward is that big they have two nurses stations and split the staff into two teams to look after 16 beds each. The rooms are big, probably too big and the ensuite toilets are a definate improvement but they didn't need to be that huge, just a complete waste of space. With all the space they've wasted they could easily of put a 6 bedded CF unit into the plans. You can tell it was designed by someone who has never been a nurse and worked on a ward. The decor makes u feel bit better its clean and fresh and has really large windows, can see for miles and a great view of a34 you can see your visitors coming and watch them park up.
I may sound pretty negative, well i suppose i am, the hospital staff really thought that these new facilities were going to be the answer to what we needed and we'd stop fighting for a CF Unit but it's just made us realise more how much we need one, the staff are now even busier, less time to look after us and less time to really understand the complexity of CF. All they can do if give u some pills and ivs and they aren't given on time, 10 o'clock ivs are given after midnight most nights, day time more like 4pm than the 2 oclocks. Now there is more beds, patients don't have to wait as long to get in, there have been up to 9 CF's in at a time since the move in November and the staff just can't cope. CF Trust guidelines say that you should see a physio twice a day, you're lucky to be seen once. Most patients are asked to self-medicate because there is one paed cf physio and one adult and they are constantly covering for each other because they have to much time off. Most of us go in hospital and stay there for the extra physio and because we need help, if we were well enough to self medicate wouldn't we be at home!! Yes we would.
That's a concept they just don't see to get at Stoke, we don't want to be hospital and making that decision to go in is a difficult one, then when your there you know as much as you want to go home you have to stay till they are ready. There is way to much enphasis put up estimated discharge date everytime you see the consultant and when you tell them you're not ready to go home they tell you "it's not a hotel"!! Well.... i think we know that, the foods crap, they ain't clean, the care isn't what it should be so why else would you want to stay unless you feel like your not well enough to go home.
I wonder sometimes what goes through the heads of the CF Team at Stoke, I've made complaint after complaint and told them ways they could improve things it just goes in one ear and out the other. It's not just me my friends there are driven mad by the same uselessness to listen, to change and to do anything about things. That's why in the end i made my decision to go!
Those 8 days i really felt poorly, normally when i'm in hospital i go home every evening, the luxury of living 6 miles away from the hospital, but i went home twice for a hour or two but it was exhausting. The staff on Ward 233 are lovely, they do try and it's not their fault, they over worked, under staffed and unable to do their jobs properly at all because of the conditions they have to work in.
I went home on my IV's but i still wasn't feeling well, i felt a little pushed out but i wanted to go home and look after myself, nothing they were doing for me there, especially when my last two days i stayed for extra physio and didn't see one at all, wasn't any point in being there. From my hospital bed i had finally sorted my transfer and had an appointment for CF Clinic in Wythenshaw for the 25th Jan. I was so excited to leave where before i'd actually been quite teary, but to be fair i was sick to death of the crap that came with things there. I fight every day to stay alive, i shouldn't have to fight a hospital for my care.
Although i've now moved which i'll tell you all about in my next blog, i will still be campaigning and continuing to fundraise for a CF Unit at Stoke, that's for all my friends. Not everyone will be able to take this opportunity to move hospitals and they deserve so much more.
xxxxxxx
Sunday, 12 February 2012
Wednesday, 7 December 2011
My life changing and i'm not ready to accept it!
Now for an update on me!!
Over the last few weeks since i got out of hospital to say i've been feeling down is an understatement. I've been frustrated, crying lots and generally not really living my life.
When i went in hospital for the first time this year for my iv's, i was really struggling, clogged with so much sputum i felt like i was out of control. Everytime i have IV's i have them at home, i honestly don't think most the time that at my hospital in Stoke they actually do more for me that what i can do for myself at home. It was a huge decision to put myself in there and i actually felt excited, i always get told off when i'm ill not for resting enough or doing enough physio so i couldn't wait to finally be a good girl and feel really well at the end of it.
2 weeks i stayed there, i had to have my drugs changed for a third week of Iv's to which i came home for and finally back at home, my third week n different drugs seemed to do the trick. My lung function had been 27% the second time it had been this low this year, but finally i hit an the highest it had been all year of 43%. I felt brilliant, i could breathe and i didnt feel clogged, the week of Meropenim had done the trick.
For about a week and a half. Then i had to give in to putting myself on Cipro. N i'm still on it now, i've had 3 weeks tomorrow and now i have to come off it, half way through my Cipro and it was 30%, i didn't want iv's then, i said i wanted to wait till i felt like i really needed them, but now i don't see me making it thru christmas and having a good time unless i give into more ivs. So tonight i've made the call and looking to start them friday. Least then i can get two weeks in and finish in time for Christmas, hopefully means i'm gonna feel happier and gonna have some energy too.
I've kind of stopped living, i feel lazy and tired, i'm frustrated with myself, i lie in bed in the mornings dreading getting out and how i'm going to feel, cuz it bed i feel warm cosy and well. It's when i get up within the first half an hour i know if it's gonna be a good day or a bad day. Yesterday i hit all time laziness, first time in a long time i stayed in bed till 2.30 on my day off, normally, i'm up n doing things on my day off at least by 11. I naturally wake up between 9 and 9.30, my alarm goes off for work just as a back up to tell me the time, in case i've not quite peaked at the clock yet.
I go to work and on the days when its not physically drained me and i feel ok, i'm still scared to go do anything after work in case i tire myself out. I love shopping and I love Christmas, i love buying presents for people. It really is my favourite shopping time of year, i think i'm quite good at it and i love trailing round the shops finding the perfect gifts for people.
Today i felt quite good after work, so decided to get have a little shop around, but no as soon as i left my little monsoon bubble n started to walk round with my coat n bag, the tiredness came on, the chest pain started hurting and once i'd bought myself some new wrapping paper to match my new gift bags that was me done! Tired n on my way to the car lugging my bags n wishing my car could be just like "Herbie" whistle and she's comes too you!!
So tonight i come home and text me CF nurse to see about starting IV's on Friday. Something i'd kind of planned to do next tuesday and just have 10 days as it's my Monsoon works Christmas Party this Saturday, but i figured if start friday, by tuesday i might just be feeling well enough to shop!! I'm not used to this, normally i'm my families "Christmas fairy" i do most of the shopping for my mum and grandparents just because i enjoy it so much and i can just think of brilliant presents to buy people.
I got to be a good girl, i'm having them at home, work is busy and i have extra few shifts and could do with the little extra money. Yeah yeah i know i need rest too, but i'll do that in evenings and i'll get lots of sleep and i'll do my physio. I really am gonna do it all properly, not i have printer ink i might even get myself a chart made up, i always work well when i have a to do list to work through.
I want to feel better so bad, i don't wanna believe that this is my life right now. I feel quite traumatised by what my life could be like one day. These are thought i'd need to push a side right now and concentrate on me and i need to sort my head out to do that. I watched Kirstie's Documentary "Love on the Transplant List" which you can still watch on BBC Iplayer. I cried or should i say sobbed all the way through it, but most of my tears i felt like were for me, i dread the days when that is my life waiting on the transplant list. i know i'm still along way off, i hope i'm still a long way off, but this last year or two have been really scary for me how much i've changed.
I've had 12 and about to have IV course number 13 since January 2010. It works out that every other month and some of my iv courses have been 3-4 weeks long. i feel like i have been on permanent iv's but until last few months i look back and wonder why i've needed them all.
In August I asked my consultant to send me back to Wythenshawe Hospital to see Prof Webb for a second opinion on my care. I had been there 10 years ago to see him and I had been two or three times since to Dr Rowe for Diabetes Care. My appointment came through and I went to see them on November 23rd.
I had wanted to see if i could have some kind of shared care set up with them, as i don't feel like some decisions about my intraconazole and other things have been made properly and with all the iv's i've had i wanted some help on improving my lung function rather than just accepting this and keep treating it with the IV's.
At Wythenshawe though i can't have shared care, with them it's all with them all nothing. So i've had a huge decision to make. I've talked lots, cried lots and finally decided it all comes down to this:
I don't want a life full of WHAT IF's. N so if i don't want that life i have to move and go and see if they can do more for me, the grass may not be greener, my eyes, ears might just be moving to something exactly the same and if thats the case i can move back anytime.
My mum asked if i could have a 6 month trial, so that's what i'm doing, i'm just waiting for letter to be sent now from Stoke saying i want to move. Then hopefully in the new year, i can transfer my care. It's gonna be hard its an hours drive rather than 10 mins. I hoping it will be worth it, they will admit me for 1-2 weeks to assess me and my medication and get to know me and i'm kind of looking forward to it. At Wythenshawe they have 4 CF consultants, 4 CF nurses, lots of physios and dietitians who just do CF 24.7, they have to have a wider knowledge, more things to try and they have 350 patients. They not advocating for patients, they have so many and a 22 bed unit but i'm hoping the change is going to be worth it. They seem to understand alot more that us CF's have a life around their medication, rather than at Stoke they seem to think u have all the time in the world to do medication because CF is your life.
I need people who will work with me, not people i have to battle and fight against to get the treatment i need. So i hope this move works out for me. Keep your fingers crossed for me.
I don't know anyone at Wythenshawe, will feel a bit like billy no mates!! So hoping to find a few people to make friends with through Facebook.
I am still going to carry on the campaign for a CF Unit at Stoke, it's something i've started, i believe in and still want to get for my friends, maybe i can move back if things improve.
But for now i've gotta jump ship and make this move for me!! I just hope it improves my quality of life.
I think it's time for bed now, so thanks for reading, please follow my blog.
Hope ur all well.
All my love xxxxxxx
Over the last few weeks since i got out of hospital to say i've been feeling down is an understatement. I've been frustrated, crying lots and generally not really living my life.
When i went in hospital for the first time this year for my iv's, i was really struggling, clogged with so much sputum i felt like i was out of control. Everytime i have IV's i have them at home, i honestly don't think most the time that at my hospital in Stoke they actually do more for me that what i can do for myself at home. It was a huge decision to put myself in there and i actually felt excited, i always get told off when i'm ill not for resting enough or doing enough physio so i couldn't wait to finally be a good girl and feel really well at the end of it.
2 weeks i stayed there, i had to have my drugs changed for a third week of Iv's to which i came home for and finally back at home, my third week n different drugs seemed to do the trick. My lung function had been 27% the second time it had been this low this year, but finally i hit an the highest it had been all year of 43%. I felt brilliant, i could breathe and i didnt feel clogged, the week of Meropenim had done the trick.
For about a week and a half. Then i had to give in to putting myself on Cipro. N i'm still on it now, i've had 3 weeks tomorrow and now i have to come off it, half way through my Cipro and it was 30%, i didn't want iv's then, i said i wanted to wait till i felt like i really needed them, but now i don't see me making it thru christmas and having a good time unless i give into more ivs. So tonight i've made the call and looking to start them friday. Least then i can get two weeks in and finish in time for Christmas, hopefully means i'm gonna feel happier and gonna have some energy too.
I've kind of stopped living, i feel lazy and tired, i'm frustrated with myself, i lie in bed in the mornings dreading getting out and how i'm going to feel, cuz it bed i feel warm cosy and well. It's when i get up within the first half an hour i know if it's gonna be a good day or a bad day. Yesterday i hit all time laziness, first time in a long time i stayed in bed till 2.30 on my day off, normally, i'm up n doing things on my day off at least by 11. I naturally wake up between 9 and 9.30, my alarm goes off for work just as a back up to tell me the time, in case i've not quite peaked at the clock yet.
I go to work and on the days when its not physically drained me and i feel ok, i'm still scared to go do anything after work in case i tire myself out. I love shopping and I love Christmas, i love buying presents for people. It really is my favourite shopping time of year, i think i'm quite good at it and i love trailing round the shops finding the perfect gifts for people.
Today i felt quite good after work, so decided to get have a little shop around, but no as soon as i left my little monsoon bubble n started to walk round with my coat n bag, the tiredness came on, the chest pain started hurting and once i'd bought myself some new wrapping paper to match my new gift bags that was me done! Tired n on my way to the car lugging my bags n wishing my car could be just like "Herbie" whistle and she's comes too you!!
So tonight i come home and text me CF nurse to see about starting IV's on Friday. Something i'd kind of planned to do next tuesday and just have 10 days as it's my Monsoon works Christmas Party this Saturday, but i figured if start friday, by tuesday i might just be feeling well enough to shop!! I'm not used to this, normally i'm my families "Christmas fairy" i do most of the shopping for my mum and grandparents just because i enjoy it so much and i can just think of brilliant presents to buy people.
I got to be a good girl, i'm having them at home, work is busy and i have extra few shifts and could do with the little extra money. Yeah yeah i know i need rest too, but i'll do that in evenings and i'll get lots of sleep and i'll do my physio. I really am gonna do it all properly, not i have printer ink i might even get myself a chart made up, i always work well when i have a to do list to work through.
I want to feel better so bad, i don't wanna believe that this is my life right now. I feel quite traumatised by what my life could be like one day. These are thought i'd need to push a side right now and concentrate on me and i need to sort my head out to do that. I watched Kirstie's Documentary "Love on the Transplant List" which you can still watch on BBC Iplayer. I cried or should i say sobbed all the way through it, but most of my tears i felt like were for me, i dread the days when that is my life waiting on the transplant list. i know i'm still along way off, i hope i'm still a long way off, but this last year or two have been really scary for me how much i've changed.
I've had 12 and about to have IV course number 13 since January 2010. It works out that every other month and some of my iv courses have been 3-4 weeks long. i feel like i have been on permanent iv's but until last few months i look back and wonder why i've needed them all.
In August I asked my consultant to send me back to Wythenshawe Hospital to see Prof Webb for a second opinion on my care. I had been there 10 years ago to see him and I had been two or three times since to Dr Rowe for Diabetes Care. My appointment came through and I went to see them on November 23rd.
I had wanted to see if i could have some kind of shared care set up with them, as i don't feel like some decisions about my intraconazole and other things have been made properly and with all the iv's i've had i wanted some help on improving my lung function rather than just accepting this and keep treating it with the IV's.
At Wythenshawe though i can't have shared care, with them it's all with them all nothing. So i've had a huge decision to make. I've talked lots, cried lots and finally decided it all comes down to this:
I don't want a life full of WHAT IF's. N so if i don't want that life i have to move and go and see if they can do more for me, the grass may not be greener, my eyes, ears might just be moving to something exactly the same and if thats the case i can move back anytime.
My mum asked if i could have a 6 month trial, so that's what i'm doing, i'm just waiting for letter to be sent now from Stoke saying i want to move. Then hopefully in the new year, i can transfer my care. It's gonna be hard its an hours drive rather than 10 mins. I hoping it will be worth it, they will admit me for 1-2 weeks to assess me and my medication and get to know me and i'm kind of looking forward to it. At Wythenshawe they have 4 CF consultants, 4 CF nurses, lots of physios and dietitians who just do CF 24.7, they have to have a wider knowledge, more things to try and they have 350 patients. They not advocating for patients, they have so many and a 22 bed unit but i'm hoping the change is going to be worth it. They seem to understand alot more that us CF's have a life around their medication, rather than at Stoke they seem to think u have all the time in the world to do medication because CF is your life.
I need people who will work with me, not people i have to battle and fight against to get the treatment i need. So i hope this move works out for me. Keep your fingers crossed for me.
I don't know anyone at Wythenshawe, will feel a bit like billy no mates!! So hoping to find a few people to make friends with through Facebook.
I am still going to carry on the campaign for a CF Unit at Stoke, it's something i've started, i believe in and still want to get for my friends, maybe i can move back if things improve.
But for now i've gotta jump ship and make this move for me!! I just hope it improves my quality of life.
I think it's time for bed now, so thanks for reading, please follow my blog.
Hope ur all well.
All my love xxxxxxx
Fundraising Update:
It's been a few weeks since a blogged, my head has been in a right spin!! So in the next few blogs i'm going to update you on everything!!
FUNDRAISING UPDATE:
CALENDARS
Firstly the calendars, well for a good two weeks they took over my life! In a good way, i had an amazing printers who did me a great deal on the printing and decided to go for it and have 250 printed as with the binder i had purchased came 250 hooks and coils. So i ordered them and spent the weekend at my parents binding, thumb punching and putting hooks on them. Even if i do say so myself they look fab!! N i want to thank all my CF friends for been apart of it with the photos!
So with 250 to sell, it was a lot of pressure, but they have sold amazingly well and i'm so pleased!! Now all my costs are paid off, just need to collect the money in and I should make just over £1000 for the CF Unit @ UHNS Campaign. Which i'm really proud of to be honest, but i couldn't of done it without all the amazing people who have sold them for me or who have bought one themselves. So thank you!!
I still have a few left, they are £7 to buy, if you need me to post them out there is postage cost of £1.50. You can buy a calendar through out website: cfunit.moonfruit.com
Link direct to Calendar Is http://cfunit.moonfruit.com/#/shop/4557092031
CHARITY NIGHT
On 17th December we are running a "Christmas Motown Night" we have Randy Corwood, An American Drifter singing and he is really good!! Tickets are just £5, it's at the Florence Sports and Social Club. If you would like tickets to come down for the night please let me know or email: stokesos@aol.com
SKYDIVE
30 Places are all reserved for the Skydive at Langar Airfield, Nottingham on 26th May 2012.
All the Skydive information packs will be ready by the end of the week. So if your interested in the challenge then please get in touch with by emailing me: joeyhughes2009@gmail.com
I need your name, address and email for the moment and i'll send you all the information you need to get involved and book your place.
JUSTGIVING
We still have a permenant justgiving site set up with the intention of everyone just sending a donation of £2, less than the cost of a pint and a packet of crisps. Hardly noticeable to your bank balance or ur purse strings, even at this time of year.
So donate your £2, at http://www.justgiving.com/CFUNITUHNS or simply click on the widget on the top right hand corner of this blog!!
Thank you for all your support so far and i'll keep you all updated.
Will update you all more, when i know more!! :) xx
FUNDRAISING UPDATE:
CALENDARS
Firstly the calendars, well for a good two weeks they took over my life! In a good way, i had an amazing printers who did me a great deal on the printing and decided to go for it and have 250 printed as with the binder i had purchased came 250 hooks and coils. So i ordered them and spent the weekend at my parents binding, thumb punching and putting hooks on them. Even if i do say so myself they look fab!! N i want to thank all my CF friends for been apart of it with the photos!
So with 250 to sell, it was a lot of pressure, but they have sold amazingly well and i'm so pleased!! Now all my costs are paid off, just need to collect the money in and I should make just over £1000 for the CF Unit @ UHNS Campaign. Which i'm really proud of to be honest, but i couldn't of done it without all the amazing people who have sold them for me or who have bought one themselves. So thank you!!
I still have a few left, they are £7 to buy, if you need me to post them out there is postage cost of £1.50. You can buy a calendar through out website: cfunit.moonfruit.com
Link direct to Calendar Is http://cfunit.moonfruit.com/#/shop/4557092031
CHARITY NIGHT
On 17th December we are running a "Christmas Motown Night" we have Randy Corwood, An American Drifter singing and he is really good!! Tickets are just £5, it's at the Florence Sports and Social Club. If you would like tickets to come down for the night please let me know or email: stokesos@aol.com
SKYDIVE
30 Places are all reserved for the Skydive at Langar Airfield, Nottingham on 26th May 2012.
All the Skydive information packs will be ready by the end of the week. So if your interested in the challenge then please get in touch with by emailing me: joeyhughes2009@gmail.com
I need your name, address and email for the moment and i'll send you all the information you need to get involved and book your place.
JUSTGIVING
We still have a permenant justgiving site set up with the intention of everyone just sending a donation of £2, less than the cost of a pint and a packet of crisps. Hardly noticeable to your bank balance or ur purse strings, even at this time of year.
So donate your £2, at http://www.justgiving.com/CFUNITUHNS or simply click on the widget on the top right hand corner of this blog!!
Thank you for all your support so far and i'll keep you all updated.
Will update you all more, when i know more!! :) xx
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!
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!!
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
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!!
http://www.bbc.co.uk/iplayer/console/p00lc44c
If you have a listen it 2hrs 5mins!!
We have an article on BBC website too!!
http://www.bbc.co.uk/news/uk-england-stoke-staffordshire-15597654
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!!
xxxx
This morning I was on Radio Stoke at 8am!!
http://www.bbc.co.uk/iplayer/console/p00lc44c
If you have a listen it 2hrs 5mins!!
We have an article on BBC website too!!
http://www.bbc.co.uk/news/uk-england-stoke-staffordshire-15597654
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!!
xxxx
Friday, 4 November 2011
Exciting Morning as Midlands Today Pop Round!!
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| http://cfunit.moonfruit.com/ |
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 http://cfunit.moonfruit.com/
xxxx
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
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
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