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Tuesday, 31 March 2009

Sally Walking . . . . . 1st Time

Had a few set backs, but full steam ahead now!!!!

video

Was thoughts of broncs, as still on lots of o2 and had Xray which high lighted a bad area so needed a CAT SCAN, but thankfully neither has happened. (Broncoscopy is where they ventilate yoou and get a sample of lung and wash them whilst asleep, but as she is on too much O2 they were and are relecutant to do so. Sally has retained alot (7-9kg) of fluid so this is part of why she needs o2 andher being breathless. Her pain wasnt controlled but now thankfully is and is now off the epidural. (she needed 2) and now is on oxinorm and co-drydamol. She went on the bike first time today and contintues to walk, but cant now as her feet and legs are the size of elephants!!!! We have taken a pic will post next post which, i promise will be sooner. Sally is using the "bird" at the mo to clear secreations and expand her lungs which is proving to be good.

Sally would like to thank you all for your prayers and thoughts they have sent her good vibes and make her feel a whole lot better.

Massaged her feet earlier with some strawberry body butter from the body shop, which was bought incedently by her ex husband, she was only moaning about that he didn't get her anything. when she was given it on mothers day she didn't realise it was from him.

Karen (Sally's Mum)

Wednesday, 25 March 2009

ST Patricks Day With A Difference

After I had finished typing my last post, I didn't think my journey would be starting again. At around 4:30pm I had a call that I had been waiting for... I was bathing Megan and having a good giggle when the phone rang, for a long time now I had been waiting for this lovely lady to call me, Whilst she was asking me about my IV's, I was still trying to get it into my head that it was the lady I thought it who I was talking to. It was only when she said, We don't know anything certain yet but everything on paper looks good. this is when I told her I was on 20mg of pred for only less than 6 days she said right ok will let the surgeon know, but if i were you i would start packing. Which i did whilst meg was in the bath playing with bright eyes and knowing mummy could have her new lungs.


Kelsey was with my mum having a singing lesson. I rang mum and told her.

**Sally's Mums Version**
I was with Kelsey at her singing lesson when my mobile rang, i had to go outside to answer it, Sally told me that she had had a call from Harefield and there could be a set of lungs for her, she asked how quick I could get home, I told her after the lesson as it was nearly finished. Kelsey was practicing for a concert she was in at the weekend. We came out of the singing lesson and as we were walking to the car, I told Kels that her mum had a call from Harefield she was whooping with delight, shouting and bouncing along the pavement with joy. I think passers by thought she was nuts lol. So we got home and Sal was all in a tizz, telling me to hurry up we had to go and we had to be there in half an hour, its a 2 hour journey, so no hope there, but we arrived at Harefield with time to spare. Just!!!!!! whilst we were waiting Sal asked me to do her a Physio as she felt that if this was an aborted call, her chest would have been really full So I did her a GOOD physio. Then she asked the lovely lady who's name is Nicky if she could use her computer to update her status on FB and she kindly obliged. Kelsey was getting excited and nervous all rolled into one. (Kelsey will write her own version soon)

Sally had a DOUBLE LUNG transplant

Not a heart and lung.

Around 11pm of the 17th March 2009 Sally was going to theatre. Kelsey was allowed to ride on the trolley with her mother untill the gates of the unknown, we said our goodbyes gave kisses and hugs, Sally told Kelsey she was very brave, and that she would see her soon, which happened to be 10am the next morning. there was a little problem with Kelsey going into see her mum, due to her only being 9. They very kindly let her in and she sat there holding her mothers hand and talking to her, she was very brave she did not cry. I sat with her for a while then i came out so that Sal's father and sister could go in a be with her for a while.


Here are some photos


Sally at this point was on a ventilator and could not speak. At around 2pm she was taken off the ventilator, sal was trying to pull it out anyway, the first words were "What day is it?" she was told it was Wednesday 18th of March, the next day, i think that pleased her to know she wasn't out of it for long

More to come tomorrow eve / friday morning :-)

Have a brilliant video to share xx

Tuesday, 17 March 2009

Guys & Dolls (no, not the musical)



Well, on my birthday back in Januray, I had a weird TEXT message, and I didnt know who it was from, so I asked who was this, and they replied haha, you dont know who this is, im guna have some fun. It was funny at first, as I am always playing practical jokes like these, but then it started getting rather rude!!!! Pictures!!!! If you get where I am coming from!!!!! This went on for over a week, nearly two, and I had compiled an album of mens anatomy parts! NICE!!! Finally the penny dropped who it was. And to be honest, it wasn't anyone who I thought it would be. However I was pleasantly suprised when I did suss who it was, (as so my type) and the pictures continued, much to my annoyance, when you have seen one, you have seen them all ;-)




I'd had had enough of those kinda pervy photo's, but then he asked to take me out which was fine, but im not wanting anything serious at the moment, I dont have any time and the time I do have I want it with my children. Well anyway, last month, I hadn't heard from him, so I decided to send him a text and his reply was . . . im seeing someone! In a way im happy, cos I know I won't be getting any more random pictures or messages - however they did make me laugh. But be good to see him soon, as hoping to see him in May and then I shall jump on him & annoy him like he did me!!!!! HAHA - only joking!!!




I have been divorced now 2 years next month. Seem's such along time. . . . . Where has the time gone!? Since then I did meet someone special, but always with empty words. Gosh no, never the I LOVE YOU, no none of that. We just clicked, least I think we did, but lived too far away from each other, so it was a no go from the start. We still talk which is nice, but I wont never go down and see him as he has a girl friend now who they have been together for sometime and it is love for them which is nice. However, well, quite alot of the time, he keeps saying about coming up to visit me, but never does. He has just said again a few days ago that he'd like to come up and see us, which would be really nice, as its been along time and would be really nice to catch up, but . . . one big issue . . . . His Girlfriend. I know I wouldnt like it if my man was to go and see another female and stay at her home. So I don't really know quite whats going on in his head, but as I said before, he alway's says things that he'd like to do and never quite follow's through . . . . .


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ANYWAY!!!! Something quite funny! ! ! ! ! I have had a marriage proposal...... I said NO!, But he carries on asking!!!!! Won't take NO as a HINT! He's obsessed; and want's to do the deed in Jamaica. . . So to shut him up, (lol) I said okay, but we not do anything till after the wedding, and he said okay. Right, now how do I get out of this one! I have decided to get one of these !!!!!!!!
(an inflatable blow up doll / husband!)
This guy however (not my usual type) does make me laugh; and I do love winding him up, he is so gullible..... On Saturday I decide to text him (knowing he doesn't have my number) and pretend to be anyone but me. He did suss it was me, but I played dumb, so he wasn't quite sure. anyway he asked if he could call so I agreed. he appologised and then I kept dropping hints but he still didnt get it, so I said, hey your a muppet & he replied I knew it was you! Oh it was funny!!! Howevr I now am waiting in great anticipation for his revenge!!!!!!
Anyway, have to go now, need a physio! Laters x x

Monday, 16 March 2009

Home - Happy - But Tired

Well Finally I am at home and am very tired. Have been doing quite abit, and dont quite know where to start without making this post far too long!

I have been trying my hardest to get some familiar faces / musicians to the ball and gig's, I am hopefuly for a couple, but havn't got it set in stone yet.

I have been home a week and I have had to go to my local hospital twice for more pokes. The first time I had to get an anesthetist down, he got it in 2nd second time. This day also I was in the paper again here is the link to it; http://www.berrowsjournal.co.uk/news/4188161.Offers_of_help_for_fight_for_life_mum/

And that day I took Megan to Ballet and I saw this lady have the paper and I was really dredding her looking thorugh it, and sure enough she did and looked up at me when she got to that page. I was a litle embarassed, but thought hey!

The next day, my canular tissued again so I went back to the hospital for yet another. The night before I waited 2 and half hours and the nurse who tried on me before the anestheist said next time if I needed to come again was to tell them at recpetion and in the triage centre so I wouldnt need to wait, that I am difficult to canulate. So I did, but it didnt seem to make a difference. I waited and waited and finally got called in. I explained to the nurse and a letter was recored on the screen from the previous night to get an anestheist in but it didnt seem to matter. I was taken to the minor injuries and waited. The canular I had in , I asked a nurse to take out then I get a doctor come over to me to tell me to keep it in. And I asked why and she said well you are difficult to canulate so you have to keep it in and then you will have to tolerate the pain and have the drugs through that, and I thougth HANG ON!!!!! NOWAY! You cant push drugs through a broken canular, yes but the doc was going, and I said sorry, but I am not dumb, I cannot push anything through the line, it hurts and is red and is swelling up. (it was blatentely tissued), but the doc kept pushing it. Anyway 30 20 mins later she came back to me with a green canular, a pink one and NO blues. Knowing im hard to canulate and know that I always have blue said to me, well the reason they are not lasting is because they are not big enough and the smaller ones are breaking, and im like, er NO!!!!! I have had blues that have lasted 3 weeks.... Hmmmm she looked at me as if I wasn't telling the truth, and she huffed and went away and came back with a handful of blue.

She was very obnoxious and I didnt like her. But give her credit where it is due, she got it in first time, but appologised as she thought she popped the vein as the needle went in, but as I write this (day being Monday) its still working - and it was inserted on Wednesday, but I know this one is on the way out, but I have been busy, with my arm, not like being lazy in a hospital bed. But I was greatful to get away.
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My Daughter Kelsey has a best friend called Nell and she is moving round the corner to us. about 5 mins away in the car supposed to 35 mins in the car, so that will be nice. We went to view her house and went to the pub for dinner after. We had a carvery. Wasn't the best one I have had from that pub though.

Kelsey's music teacher is putting together a concert and all the proceeds to go to the transplant fund which is really kind and Kelsey and her Best Friend will be performing in the concert which we are excited about.
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Thursday, 12 March 2009

Bruises / Canulars / Doctors / VooDoo Dolls!!!!



Well . . . . . . I have been battered by needles. . . I went into hospital to have apic line put in, however I got cancelled twice, and with the lack of physio therapy I was getting worse in hospital, which the only reason I went in was for the pic line, so I was not a happy bunny!



In the space of 10days I had 8 canulars. Which is frustrating as I had the working one took out
only to have lots more pokes after!






When I came into hosptail I was told if I wanted THREE physio's i'd need to do the 3rd myself either with my PEP or AD. (as a 3rd would be a routine not an emergancy) - However at home I do two times aday, but before I came in for IV's I was needing 3 times aday. Anyway I use the PEP as a mouth peice which I love however, either is no good for me unless I have over pressures /vib's to cough up the lovely phlem, so i'd cough up what I can without getting tired, but it wasn't enough, and I felt rough at night espically around 9/10pm. Then what made it worse was taking my pulmozyme. It really effects my consistancy straight away and its like coughing up water. My Sat's started to drop, so my Oxygen needed to be increased and I wasn't feeling any better at all. I got that sad I cried, with frustration that I was being ignored when I was telling the phyio's I was getting worse,and I knew the ceftazadime was working as my phlegm was getting lighter, but there was lots of it, and yet the "PHYSIO'S" were not going to do anything. So I spoke to the doctor and he said he would sort it out, but he didn't. So then I had the senior physio treat me the day of discharge (monday) and I told her how upset I had got, and how let down I have felt about being in hosptial. I explained to her about the oxygen needing to be increased and I wouldnt have another d-nase (pulmozyme) in hospital due to how quick my mucus was being made and she said to me, well in that case we can make exceptions, and I said NO, I was told NO, and that needing more oxygen didnt warrant another Physio. What made me more MADDER was my friend. She is in reasonable health and not needing oxygen, but had a proceedure (a tube up her nose and into her bowel) and she was offered a THIRD physio and her words to the person who asked her was **** off! Not nice I know, but she was fed up of having physio, and yet I WAS BEGGING for a third, I am quite unwell, and I was TOLD NO! Its all wrong and I am so not happy. Feel so let down.




Anyway Home Monday - Being with my girls and proper food and top most, my Mum & Employee - VER- ON - IC - A !!!! YAY YAY YAY!!!!!!!!! x x x



>>>>>>>>>>---->>>>>> This is not my employee, mum or my children as they are all angels!! This is the MOST OF THE NHS STAFF, well, ones who get on our nerves!!!

Thursday, 5 March 2009

Proper Un Happy

Okay, well today, the pic line didn't go in. I was told I was going down this morning for a pic line and so after my physio, I asked the nurse to take my canular out, so I could have a lovely shower. Whilst I was in the shower a nurse came to me, to tell me my line had been cancelled and that I may go down tomorrow, if not next week. So silly me had my canular took out, and now I have no intravenous access for IV's! OOOoooops!!! Silly me! So after I shaved my arms (yes shave my arms) and feeling lovely and fresh and in clean pyjamers, I had to have another canular inserted. Only half in mind, becuase the vein its in is tiny, and to make it worse, its right on the corner of my wrist!! Thankfully LEFT-HAND! So thats okay then!

After the nurse got on the phone to xray again (is where im to have the pic line in) so see when, and to explain that I am quite poorly and need this, so I am down for tomorrow morning now! Wooo!

I also had a visit from the senior consultant too. Im thinking, oooh have I been a naughty girl? Cos i'm always good.

Anyway, it was down to the fundraising. Someone (I know who) wasn't happy with me doing it, and getting staff (physio's) involved! But what this person didn't know before going to the consultant and telling him I WAS PESTERING THE PHYSIO'S AND THEY FEEL AWKARD; was that it was one / two or maybe even three!!! who had said to me, hey, you know, we rasied money for >>>>> last year, but we could do it this year for you, as its a cause closer to home, were their exact words!

So after that, I realised hey that be good, if they wanted to, they could raise funds for me, so I then asked a couple more people. some said okay, others said they may not beable to becuase of it looking like favouritism, (I said oh okay, thats fine) and left it at that, and this was like 4 maybe 5 weeks ago.

So why now, get the doctor to say something on a level like this I dont know, oh yeah and also, FACEBOOK!!!! <-- haha, I was told that nurses and physio's are not to cross the boundary's bla blah blah, and I was quick to tell him that, "just to let you know, I don't fancy getting to any of the staff's pants thank you very much, and so you know, none of them are good enough for me!" He chuckled at that, but I am not happy all this is happening because one of the nurses failed to keep their knickers on with one of the patients some time back, and becuase of this, all the staff have had to remove peops from facebook. Years ago, things were not as tight, as we knew how to behave and what "boundaries" were not allowed to be crossed, but someone crossed this and now has screwed it up for everyone else. If there was a charity/cause "you wanted" to raise money for you would "do" it. No-one can tell you who to raise money for, and if you want to do it, then thats up to you, noone else. I wont feel bad that they dont want to raise money for me, and I totally understand them choosing not to, but if they wanted to in their private time, then thats up to them, epsically when I happen to be friends with their friends who have already got events planned. This is a tough one, but I don't want to get peops in to trouble. But the "person" who had told the doctor that their staff were feeling awkward round me cos i'm asking them about fund raising, well, needs shooting! And is always "their jobs worth" who I like less more now, cos they didn't have their facts right first!!!!!! Oh well!!!!!

I'm Signing off now, talk to you later.. P.S. Here is a pot full of Phlem, I coughed this up in one sitting!!!

Wednesday, 4 March 2009

Pic Line Tomorrow

Due to all the Intravenious Antibiotics that I need I did have a vascuport inserted below my right shoulder. This would have been my 4th, but in May last year,it got infected with Enterococcus A bad bacteria, and to be blunt, it nearly finished me off. It took nearly 4 weeks to diagnose me with this, and kill it off I needed my port removed and needed IV Daptomycin.

In October last year I was admitted to the ward, to have a new vascuport inserted, as weeks before I'd had 27 canulars in just over 7 days.

Here is a picture of one that lasted 21 days!!! It looks grose to be honest, but I was happy about that, however, the surgeon was not happy to be putting a port in under a local, as I have already had 4, there are not many places left to put one, and the vein that he wants to use to insert this port is the main Jugular, and he said that it wasn't very good to do under a local, as can get very messy, but if the worst came to the worse he would, but was reluctant to preform this under a general, as was my CF docs. What they didn't know is I was scared shitless anyway, I didnt want the proceedure. The way I look at it, was well, I am going to die if I dont have a lung transplant within a year or 2 at a push, and if I get a Transplant, I wont need the port anyway, and what I didn't want was another infection like I had before, plus, my main worry, was I didnt want to go to sleep!!!!! I felt rough waking up from a general 3 years ago when I had the port inserted, and I wasnt or hadn't even used the niv, and I am much worse health wise now, so that is another reason why i didn't want this.
So anyway, when I went to harefield to mee the surgeon a few weeks ago, I told her this, and she asked me if I'd ever had a pic line instead of being poked all the time by those canulars, and I said I didn't know. She told me they would be much better, so I thought next time I need IV's I would ask, and as it happened they have started giving them to patient who have problems canulating, as I was needing the antehatists to come down and canulate me in the end. So tomorrow I am having a Pic Line <--Click To View More Info

The Media Followed:

The day the Evening News Artical was publish. I had phone calls and emails from quite afew people. Smooth Radio phoned and took an interview for their station, and then BBC Hereford and Worcester emailed asking me to go to the station which we did, and here are some crazy pictures:











And then here is one of Kelsey thinking she is a DJ!!!! The girls loved it! (what an experience for them!)

And today we went to the Cinema to see Bolt!!! The Girls Loved it, Kelsey cried and Megan wasnt sure why she was feeling all these emotions so she went all cuddly on me.. Bless her.........
For those who do not know, Bolt is!!!!!!!! -
A dog, who thinks he is a super hereo, but slowly finds out that he is not, and comes across some brilliant characters!!! My fave is the hamster!!!


YOUTUBE CLIP / Check this out!!!! :-)


So after the film, we get in the car and turn the radio on, and whadda ya know, we are on the radio, from what was pre recorded that afternoon. Here is the link to that:

http://www.bbc.co.uk/herefordandworcester/content/articles/2009/02/18/sally_anne_grainger_feature.shtml



And would just like to say Thank You to Nathan who looked after us at the radio station.

Monday, 2 March 2009

MEDIA WEEK 4 TRANSPLANT FUND RAISING

A few weeks ago, I deccided I was ready to approach the USA TRANSPLANT route. The day I was due to go to Harefield to meet the surgeon, my car got broken into, and my TOMTOM stolen, along with my precious sun glasses. We had to leave for London at 11am and noticed the car's door was wide open when my mum took the girls to school....... I phoned the police and they sent up the forensics team, and tried to get some evidence, but NONE! I was well made up though when I spoke to the forensics lady, as she told me, as she was a sulvillian, she didn't need to do the physical training to get into the police side of thing's which is fab, as this is the area that I would like to work in when I have qualified, either that or lab work, so even though my day was saddened with thieves breaking into my car, I was happy that the future I wanted was in reach. - Though ironically, I was going to London that morning to try and see if I had a future, and I believe I do, where there is life there is HOPE!

So before I left for London, I emailed the editor of the evening news, explaining about the break in and my plans to try and raise money for a transplant. They emailed me right back to say they would like to come in interview me for the story. I agreed and left for London.

When I came back I was very happy and my mum and I decided to create a facebook group to create awareness of fund raising and the lack of Organ Donors is the reason behind the fund raising.

The next day I had a phone call from the Lovely Lucy, and we arranged for her to come and learn about my family and myself and why I was doing this.

I was told that I would go in Monday's Issue of the evening news providing nothing major happened in Worcester over the weekend.

The same day I had an email from a lady who worked at the Worcester Standard (another news paper) asking me if she could follow my story, I agreed and she too came over with a photographer (who's trousers I wanted to pull up and explain the reason behind a belt) - however i'm told is fashionable to have your jeans half way down your bum!!! Sorry Nick!! :-)

There was something stranger about the the nice lady from the Standard; as it happened we shared something in common, we both have the same God Children (Sam & Jack) . . . . I couldn't believe it. After talking about friends we shared in common from the wonderful world of Facebook, did we realise that we were both at my Cousins Son's Chirstening, and then that we were both Godparents! - WHAT A SMALL WORLD!

So having told my stories, we waited on them being published.

Worcester Evening New's Artical

http://www.worcesternews.co.uk/news/4130811.Mum_s_fight_for_life___video/

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The Standard Artical's

1) http://80.194.82.59//obsstandard2/2009/week%208/worcester/wstw003c200209v1-web.pdf


2) http://80.194.82.59//obsstandard2/2009/week%208/worcester/wstw005c200209v1-web.pdf


3) http://80.194.82.59//obsstandard2/2009/week%208/worcester/wstw010c200209v1-web.pdf


Unfortunately, A Young Man Lost his life over the weekend by being stabbed. So I was not in the news on Monday, and was put back for being on Tuesday's.

Sunday, 1 March 2009

Grounded From Her Mobile Phone!!!!!

Hello!!!! I have been so busy, what with being stuck in my room, sat on my bed in hospital, sipping tea, eating cadbury's mini rolls and french fancies, that I havn't had a single chance to get on here and add to my blog! Its really tiring and busy being a patient!!! hehe

On Saturday morning I had the joy of my eldest texting me and calling me telling me her Gramps is being cruel......... Then I didnt answer (as I was asleep) it was 8.30am, she decided to call!!! THAT WOKE ME UP! But. . . . I ignored the phone and then another text, and then other text. MUM PLEASE CALL ME! Mum, Gramps is saying I cannot have a mac'donalds for lunch, so I am going to starve and that is cruelty!!!!!!!!

So anyway, I tell her to appologise to her Gramps whos's morning she made hell and then she tells me, Gramps is making her eat sausage which okay she wont eat for reasons, and so I said well say to him, "Gramps, I will try it, but I really dont think I will eat it as I dont like it". But then she's telling me, she will starve instead. She is so mellow dramatic!!!

So she went to her theatre group in the morning till 11am, and then asked me what time her dancing was in the afternoon, and I said it was 2.30pm, and she said, oh, well I cannot go then, and I asked why not and she said "cos Gramps said so," and I asked her why and she said "I dont know."

So I phoned my dad up later, and finally I work something out that she can go, so I speak to her on the phone and she said "I don't want to go, I fancy chillin!" So then, after all of today's antics, with waking me up in the morning, I seethed RED!!!!!!!!!!!!!!!! HOW DARE SHE! I just wanted to put her across me knee and spank her bum!!

KIDS!!!!!!!!!!!

Well anyway, I told her, she is grounded from her mobile phone and i'm having to think of something else as well for her. She must know that she cannot play people off against each other, it is wrong, and for that, she will LEARN!!!!!!!
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Today, my friend who is the sexy one who is in another hospital, well he has just got engaged; and I am so touched, his finacé asked me to be bridesmaid. I am so honoured, I weeped. I said though, it cant be a meringue style dress, or ill have to refuse! I was told red satin, so I came across this: - I just pray its nothing like this!!! hehehe

ANYWAY GUYS! I Just want to say, I am really happy for you both and I know you will make each other very happy. To MR & MRS Lewis to be!!!!!
And Thank You For Asking Me To Be There For You, On Your Special Day xxx