The Infamous Toothbrush!!

Here is the imfamous toothbrush that I promised i'd get a picture of!

I am back in the luxury of Heart Del Sol at the moment, and already boredom has sunk in. One of the best bits of news today was, WE NOW HAVE FRIED EGGS! Wooooo!!! I love them! I used to ask the nurses to go fetch me a chick in the morning along with a pig and baked beans, oh yum yum in my tum it was. But now I can have an egg for me tea!!! Which is what is on the menu tonight and lunch was mingning; mustard mash n peas!

Today I had the most unexpected phone call;

From an old doctor that used to work here. My friend ( a really old sexy male friend) is in hospital too, but in a different one, and his doctor used to be mine. So had a quick chat on the phone which was nice.

I am well chuffed at all the events that are being organised at the moment. And so MANY idea's its amazing. It just goes to show, that some people who you think are there for you, are so distant, and others they are always there, and yet you dont realise it. It has taught me more values, and I guess we are all human, and we are still all learning. . . . . . . . .

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Im still trying to get this guy to sort out a website, and he says NO to anything to do with Fairies.. I am gutted , sniff sniff!!!!! So as a form of payback, I am annoying him by sending him random texts with random questions. So far I have found out that he likes blue toilet paper, he likes to sleep upside down, he chews his food 20 times before he swallows it and cuddles up to a teddy when he has a bad dream! Na Not really, That bit I made up, well all of the answers actaully!!! Funny though!!! Sorry!! hehe

But things on the fairy front may have changed, but we'll see. Im knda going off fairy idea, need to see if it looks right.
This picture is when I ordered Kelsey's tutu (& mine) and head piece for Megans Fairy party. And I dressed up in the fairy outfit to do a talk infront of all the cf medical team in my fairy outfit with my blonde wig on! I will find a pic of that to post on here when I get chance.... See Fairy is Good!!!!!!!! Pink & Black just like something else that I will talk about soon........ :)

First Time At Clinic This Year

I have dodged the appointments sent through the post, and great. I have since being discharged since chirstmas had phone calls to the hospital when I have not been well, but thankfully, dodged going into hospital as I had felt better after rest.

I have been so busy the past few weeks, I have started to feel rund down and blantely crap. So 3 weeks ago I started on a course of Cipro, but I dont think they have worked this time, as I still have streaking in my phlegm in my lungs. So dont really want that to turn in to a ful scale infection, so I finally set up and went to clinic. My blows are crap, 0.something over 1.35 I think??????? however they are slightly better than they were when I went in for a blood gas check up 5 weeks ago. So . . . . . hmmmmm, Anyway, my weight is 52.8kg - as someone calls me their chunky monkey!!! I love it!!! Has a real good ring to it. so I am using that one, and telling everyone, im a chunky monkey!!!!!

Spending a lot of time in hosp, prooves hard, as to me some of the nurses become friends, and if I wasnt so damn ill, id probably get pissed with them on nights out, Not all of them mind you as some are right stick in the muds and need personality transplants; but some are real stars and sparkle and have helped me through some of my darkest times, and I do miss them when I am not there, however being at home with my girls is better - so THANK YOU to socail networking sites - FACEBOOK! This allows me to stalk them all in the privacy of my own home! hehe - ONLY JOKING!

Anyway, was nice to see some friends and they I will be gracing them with my presence next week, if not the end of this week. I have decided that I need IV's and for this I will have to be admitted, as I need to be de-sensitized to Colostin and as my veins are shockingluy rubbish, I can have a canular (venflon) in my arm, however they dont last long, and my stint in october, had me have 27 in just over 7 days, so I will have a pic line this time, which will last up to 4 weeks without it tissuing and means I can come home and finish off the iv's if I dont feel too tired.

I had a peg inserted not long ago, as the one I had in needed changing and I have a little video of the grusome happenings so I will have that here when I can find the file; So ENJOY!

I also have some classic kids moments where they are oblivious to me filming!!!!!! :-) I shall put on here when I can dig them out, and its appropiate with what im talking about, however I could just insert it randomly as I pretty much do everything else!! hehe

Right I am signing off today and will post again as soon as. Oh and OMgosh . . . I missed Heroes last night!!! I am watching it off a streaming website, but I forgot to watch it last night.... GUTTED! Will have to watch tonight!!! I Love Heroes By The Way!!! I Am Such A Geek!!!!!!

Transplant In The USA

The end of January I went for my 6 monthly check up at Harefield. I was supposed to go back in August. But That was cancelled, so then it was re arranged for September, then I couldnt go to that either. So was re arranged again for sometime after, and guess what, I couldn't go again!!! This wasn't making me feel great about myself. As I had so many questions to ask, about different options I could choose ie. USA Transplant, and also I had heard on the grape vine that someone else who is as small as me, had a different proceedure where they cut the lungs down to size. And I wanted to learn more about this.


Well. . . . . . . . Due to my very long admission, I decided to email my favourite co-ordinator and ask questions.


The reply was out of this world. She told me that they have employed a new surgeon for this technique (shaving) and it would take off in the not to distant future. _This gave me hope! Again another friend of mine had lost their fight to CF.


I then approached my team on ward round and they were shocked that I knew, but said they were not going to tell me about this until it was set in stone. But them knowing about it too and being told it from Harefield gave me enough hope to carry on fighting!


It was still sometime that I was able to get out of hospital for more than a few days and get on the phone to harefield for that appointment that I so desperately wanted.


I was discahrged end of dec, and hoped I would stay away from hospital long enough to keep my appointment and thankfully I WAS!!!!!!!!!


I met Martin Carby and he informed me to stay and see the surgeon as it would be good for her to get a good look at me to see if I physically looked well enough for this proceedure, and they are doing 2 more others too. 1. Ex VIVO, and then there is 2. LVRS and then 3. Lung Lobar.

Here are links to these I think.
Ex Vivo - INFORMATION ON EX VIVO


^^^^sorry about the long address I dont know how to make it shorter;
Ex vivo (is where possibly a poor set of lungs are not working properly they can place them in the dome thing, and flush out bad toxins and possibly give them antibiotics (as they use a synthetic blood) that allows this, and hopefully lungs that may have been disguarded as they were no good to use, by using the ex vivo they could make them better and would then be used - which would increase the donor rates) this is 100% sucsessful.


I dont know a link to the "shaving" - but basically they get a larger pair of lungs and staple them so they can be shaved to become smaller,


And then the Lung Lobar is where again they take a larger pair of lungs which would be too big to be inserted in to my chest cavity and they cut a lobe off each lung and insert them into my chest, and they act as a proper pair of lungs.


With those two proposed proceedures, it is more risky and am told that I would spend 1-2 more days on a ventilator than with the regualr transplant.


On that clinic day Dr. Carby pleaded with me to stay and meet the surgeon, so we did. We waiting from 3.30pm till 7pm. In the end, I said I cannot wait any longer. I had to get back home which was a 2 and half hour drive, so we left.

A few days later I phoned to make an appointment to meet the surgeon, and I got my appointment for the 12th of Feb,

It was a brilliant day. Very positive and thats when I was told what I have written above ^^^ .

I am worried about this, as either have never been done in the UK before, but the surgeon says I have done lots and I am good at what I do. She came from Canada and had done them there.

After my apt in Jan with Carby, I asked him about going abroad. And he said he would refer me to the UNC (Unversity of North Carolina) - I spoke to them after and they said I would be waiting from 3-9 months, which is a long time to be away from my girls, and I was suggested to to the DUKE to see what they were like, as they are the best in the Country. And sure enough, I was won over by them. And I know people who have been there for transplants, so I feel comfortable with that.

Now I have decided what I am aiming for, the job now is to get my arse moving and sort out whats next.

I spoke to my local news and the BBC again and they are all for helping me go public with this. I have had lots of strangers get intouch which I am totally shell shocked with all the support I am getting. Friend and family have been rocks for me too, and what gets me more than anything is poeple who i'd never thought would help have helped. I am so shocked, and so greatful. And people who I thought would have helped, like my dad, and other people, (not naming anyone) have not bothered at all until last week. My dad is now like hmmmm, where as before he said I AM NOT DESERVABLE of a TRANSPLANT, can you believe that!?!?!?!?!?!?!?!?! And others who are supposed to know everything about me, didnt have a clue, cos they dont seem botherd, and its all about them and their life. anyway, I said I wasnt going to go into that....... But yes, it just suprised me somewhat, and am in total AWE with all the support I am getting, so THANK YOU!!!!!!!!!!

We have got lots of fund raising ideas and things going on at the moment, that I am not even resting. I am stressed out which isnt doing my health much good, so I made a promise to meself this week, to sit on me bum and chill, and not think to hard - well thats not hard to do in my case anyway.

Im going to sign off now, cos I think I have rambled on too much today, and I dont know what I have said and havnt and I dont want to keep repeating myself, as I can see I already have! Ooops!!!!!!

Bye For Now

Sally x x x

Crikey - Have been so Busy

Crikey!

I have been busy. First day today to sit infront of the laptop and type.. Awaiting in great anticipation of the Kiz coming in full steam on how I can personal my page with showing other people's blogs too!!!!

Okay.

Since I wrote last was just after my birthday. (however my daughter pursuaded me to stick a rednose day picture up) Friday the 13th!!!! Anyway it has been over a month and I really will start updating my blog more often.

Well im going to try and rewind to what has happened.

Two of my lovely friends took me out for a belated birthday meal (as I felt pretty rubbish on my birthday) as my ex husband said he would take me out. So I forwent any other plans to do so, and then he let me down, saying I never said I would take you out for your birthday - and so I sent him the text that said he would. (GIT)

Then he rang saying do I still want my birthday present (an electric toothbrush) -hell yeah I wanted it still, but I said its up to you. So his reply was . . . . . . WELL I AINT SPENDING THAT MUCH ON ONE! YOU CAN HAVE A £75 one, NO SECOND THOUGHTS YOU CAN HAVE THE £50.

I said where he could get the expensive one half price, but he was in tesco and he couldnt be arsed with shopping. So I had a cheap one. Oh well. (at christmas I went all out to make it special for him, with gifts from the children, ) im not moaning at the cost - not at all, as money means nothing to me, it was the fact there was no thought!!!!!!! And then a birthday card from him, was , To Sally, From Kelsey & Megan. Not a Phil, and it was so scruffy, and the card wasnt even a happy birhtday mummy.... NO THOUGHT WHAT SO EVER! SO COME HIS BIRTHDAY HE CAN ********!!!!

There, there is my rant for my blog! I hope there are not anymore.... But hey, my girls made my birthday special, so that is all that counts!

((I got my mum to take back my toothbrush and get a refund . . . so I went to amazon and got a much better one, one that my girls can use too, (meg has a disney princess head for hers) and I got it for £20 more - but is so much better! I'll take a pic and add it!! THE INFAMOUS TOOTHBRUSH!!! haha

Well, I have fallen out big time with my best friend. Its such a shame becuase I miss her heaps. She got back with her boyfriend, but since, I hardly see her. When I feel rubbish, I dont answer the phone to anyone, or when I text its usually 2 days out of date, but she knows how rubbish I am when I feel bad, but then makes me feel bad for doing so.

I wont go into it, unless you want me to, but cut a story short, we are friends, but I have a vacancy for no2 best friend. I have Jody, have known her since school, and on and off though growing up, she has always been there for me. She is my top BUD!

Well begining of February, I decided, that time is moving along and I would have been at the end of feb, on the Transplant Waiting List 3 1/2 years. The reason why I have been waiting so long is due to my small size. 4"11.

I have been on the list and have seen others go on the list after me, and who have had transplants. I have seen others die whilst waiting on the list. I had spent most of last year in hospital. 8 months intotal. And I saw quite a few of my friends pass away. One person in particular who sadly left us on 9.11 Naz! She was amazing. She left behind a 4 year old son. And sadly never got to take him to his first day at school. She was in hospital dying. We all thought she would pull through, as she always did when she became this sick, Sadly this time she never did.

This really cut me deep. I lost all emotion. I couldnt cry, the best word I can use for this feeling was NUMB! My friends, doctors and even nurses, noticed a change in me, and I said I was fine. Then I realised I wasnt. I would describe the feeling as I'D LOST MY MOJO! I even decided to see the psycologist. She helped me see things in a different way. And slowly I became to feel less NUMB.

I was going home, for a few days, and feeling that bad, id go back in to hospital. I felt rubbish, espically on my girls, as they wanted me at home and I wanted to be at home with them.. Then when I would come home, the house would be a tip. My mum would not have the house clean and tidy as I would have it, and this stressed me out LOADS. And didnt help me feeling helpless, and I had no energy to even help tidy, when I would come home I would sit infront of the laptop, or on the sofa doing SFA!

In October I started planning my daughters birthday party. Fairy and Pirate. This gave me something to look forard to, and then my other daughters party which was to be a complete suprise. We hired a Limo and took her to a fancy resuratant. My best mate, was like, oooh a LIMO, cool. I said well she could come with me if she liked and she was like ouh yeah!!! (and now one prob with my old best mate, was I forced her to come to limo, and she had to take time off work etc) - (this did my head in, cos she was like ouh yeah i'l come, so I said okay) sorry, but other people asked, oh can I come & I had to say no, cos there was no room) really upset that I had forced her to come into the LIMO) ah well.....

So anyway, preparing these events, I was focused, and felt less NUMB. - but still in hospital. Thank goodness for ward 26 with LAPTOPS!!! Yahoooooooooo!!!

Now my target was to stay out of hospital for these birthdays. one was 10th December & #2 was 23rd December.

My friend Michele from the BBC said he would come and do something to rasie awareness for Organ Donation so he came up top trumps, and broadcasted something really good;
Link - http://news.bbc.co.uk/1/hi/england/7775640.stm

And then ITV wanted to do a simular thing to. But I do not have the link to that one anymore, other than this - which is copied from YOUTUBE -

http://www.youtube.com/watch?v=_z4IrYhD_-c

But I had decided if by next year I was still waiting for a transplant, I would consider going to America. At this point I didnt know the ins and outs for this, but it was another option, only thing I knew about it was it was COSTLY!

This is my very funny mum (By Kelsey-Louise)

Christmas, New Year, Birthday!!

Christmas was brilliant this year, My Mum, Daughters and Myself, Stayed at the Celtic Manor Resort in Wales, Thanks to the WILLOW FOUNDATION!

Here Are Some Quick Snaps :-)

There was even the real Santa, as Kelsey my eldest was on the verge to not believing, but thankfully, the REAL SANTA came to lunch, and all is safe again, but am thinking this year would maybe be the last. . . . So here is to keeping up the believing!!! Megan however, thought it was amazing!!! When they saw Santa at lunch, they told him off - as in our room, were snowy footprints on the floor, so they told him off!!! It was so funny!!

New Year - I wanted to go to my newphews house in Essex, but I didnt feel well enough to go, all my family were going and I felt so bad that I wasnt up for it, Mentally too, as now I feel im exisiting, and hardly living - I am a very lively person, and being told by my body that I am not able to do what i'd like is very frustrating for me!!!!!!!!! To say the least!!!

So my mum and I, not forgetting my very excited Kelsey (Meg) was in bed as was getting tired - sat infront of the TV and watched the fireworks, Oh and becasue we live on a hill, we get to see real fireworks from all around - which was great, but lack of oxygen made me go and sit back on sofa and watch the remaining fire works on BBC1. I got emotional and started to cry. Cos I know what I am missing, and want to start living and being there for my children, and have my mum play mum to my girls is really hard as I AM THEIR MUM!

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Saying that, it was my birthday on Sunday and I am a whole year older of 29!!! Im looking forward to turning 30, and who said getting old is daunting?!?!?! Bah - It is exciting, as there is always something new around the corner being waited to be explored!!! Hoping mine is to be a better mum and help more people become aware of the fact that there are NOT enough donors!!!

Over the Christmas period my family were on the news promoting Organ Donation Awareness.

Here are the links to my fame!!! hehe

http://news.bbc.co.uk/1/hi/england/7775640.stm This one went out on Kelsey's 9th Birthday 10th December -

http://www.itvlocal.com/central/news/?player=CEN_News_15&void=273065 This aired on Megans 5th Birthday 23rd December

I am so very proud of them both, and the Central news clip encourraged more people to sign up. So I am so glad that it made a difference!! :-)

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The day before yesterday, Megan fell and hurt herself, and she cired - mummy, I need you. Those 4 words were like magic to me!!! I have not heard those words for a very long time, and it was a heart warming feeling. And then yesterday, I felt rubbish, needed more oxygen and my pressures on my niv machine need upping as i am getting headaches again, so this means I need to go back to hospital for yet more IV Antibiotics. I have managed to stay ou for a whopping 3 and half weeks!! WOW you may think, but this is the longest time I have been out in 9 months, yet myself and girls are upset cos 3 weeks is NOT along time at all.

Halloween Times

Since my last post, a lot has been happening to my world. A year on the 19th October my grandad past away and that was a hard day, as I have been so unwell lately, the person who I would always seek advice and comfort from is not here anymore, and that day was a harsh reminder!!!

My best friend had been having relationship problems and this blog is about my honesty through out and I didnt really want to put my feelings on here, even though I seem to have made them quite clear to them both. Well the good news is that they are both giving it another go, as much as I hated them being together at first (as I fancied the pants of him) I see that they are really good together and hope they can continue to grow OLD (minus wrinkles) together!!! :-)

I have been spending a lot of time in hospital. I was in the middle of November going to have a vascuport inserted so I did not need the continuous poking and prodding of canulars, however, I was discharged the begining of November and was due to come back in a week before, but soon as I got home, I picked up another cold, and wasnt well enough for a general anesthesia, and becuase the internal jugular (the vein needed to be used for this) the surgeon was reluctant to perform this under a local. So I was cancelled until further notice. HOWEVER!!!!! - I did not want the operation anyhow! Why?

Well is simple really, last time I had a GA (general) I was knocked about a fair bit and my chest was terrible afterwards, and 2 months later I nearly died, and needed NIV (non-invasive-ventilator) for 3 weeks 24/7 and it took me along time to recover from that stretch of being ill, and now 2 and 1/2 years on I wear the NIV at night to keep my airways open and disguard the Co2 which I cannot breathe out, so I thought -

Well I am at a "crap" point in my life with my lungs, I was terrified of having a GA as I have always said since the last one, I wouldnt have another unless it was for a transplant!!!

So a lucky escape there...... for now!




Since has been halloween and here is a picture of my girls - they came to visit me whilst I was in hospital -

They were very scary looking and got some treats from the nurses and some fellow patients.