Tuesday, 30 June 2009

30th June Week - First Weekend Out & Gym!

Hey and good day to you all... This last week has been an absolutely mad'un!!! AGAIN!

Well Megan had her first Piano Lesson and did really well. She knows her keys C,D & E from bottom to the top! Really proud of her. Her next lesson is: Today! And she did really well again. I was watching her as she was taking it all in from the teacher and her mouth was wide open. :-)

All week I had been planning on going out. As it will be my first night out in about 2 years. We went to Merryhill shopping, Cathy, Sally & I, and went shopping in Primark!! What a wonderful place...

Outfit bought and week a good one. Jody my bestmate from school years came up, and we had coffee, and went to town shopping. I bought some fake bake... ITs just so nice to beable to get up and go out and not worry about o2 and being back at home for treatment... its just get up and go now!

On sat day, Kelsey had a concert at the Elgar School Of Music, and she did really well, but her nerves got the better of her. Here is a pic of Kelsey & Her bestfriend who also sang. They were both very good.______________________

Saturday was brilliant.... I got a little bit drunk, but I wobble alot anyway, so added alcohol made it worse and I have a drunken injury on my foot.

Here are some photos from the night: Below -

Steve, His Girlfriend Kelly & Moi
Here Is My Best Bud From School Years; JodyLea

Here Is Kathy & I

Here Is All FIFTEEN Of Us Outside Tunnells Opticians;

!!!OH WHAT A NIGHT!!________________________

Can You Think Of A Caption For This Photo?______________________________

And Finally -

Here Is Me & ? ? ? ; Tricia & Carly - Just before getting turned away from Bushwackers :-(


I got in from going in to town and my mate who got home before me, decided to get into my bed and sleep// I WAS NOT HAPPY , as there was there spare room for him to sleep in..... So when I got back, (early hours of the morning, I made as much noise tidying up as I could!!! ) AND I ENDED UP SLEEPING IN MEGANS COT BED!!!!!! Being 4"11 has its advantages!!!

Sunday; I woke up early and finished tidying up, and I had the girls back early as me and Pauline (mother inlaw) & Kelsey were going to have a picnic at Megans Rainbow Fun Day, but when we got there; there was no parents to stay, so we dropped Megan off and we went to Malvern Park. It was lovely.

Monday, back at school doing the school run. I have been looking after myself and girls now for almost 2 weeks on my own. Mum is in Glasto, having fun and now she has a cold! Oops, not good.


I have harefield on Thursday, I been out of hospital for so long now, it seems strange, but for some gut feeling, I think they are going to keep me in. Kim is going on Thursday too, so will be exciting, as I am driving myself this time.. :-)

Finally, here are two pictures of me, from my first time back at the gym in 3 years...

I did a warm up on treadmill and did 15 mins on there with good speed and incline and then I ran for 1 minute too, and it was my legs more so than my new lungs, as going out sat, and trying to dance and keep up straight proved a little difficult, so I need to go to the gym to get my legs stronger, and get these new lungs working harder! I am determined to get ovr 100% of my predicited, and this week, im adveraging at 1.74 /over/ 2.07 . So its getting better, and I cannot wait to go swimming, as I know that will help my upper body and make these lungs work, so will ask about that on Thursday.

Anyway, bye for now!

Tuesday, 23 June 2009

What A Week!!!

Firstly I will start with my list I made, I have managed to complete some of them. And they are:

1) I have managed to get back into Uni and the course that I had to postpone. I start Late September and I am only going to be doing one module a week, which is Wednesday 9.15am to 1.15pm, and this way I can gradually work myself into it without it being too much!! I am so excited about this. So Sunday I went into the attick/loft and sorted out all my uni course work and all my essays, so will slowly read through them and familiarise myself with it all again.

2) A job was going to be instead of going to uni. I wanted to see if I could train on the job rather than be stuck in a class room.... As I would like to learn this way as I feel it teaches you more, but I still don't know if this is possible, but will be keeping my ears open to this.

3) A Puppy - Well have decided that I will wait till at least the summer hols are over as I do not want to be tied down to a puppy when I now have freedom, to explore.

4 Have Sorted out a new car. I am getting a Golf 1.4 tsi. It is a nice car, and I shall get it in about 8 weeks time. Will be better for myself and my family. However we will miss the open top of the car. Thankfully we will keep it for most of the holidays and enjoy it.

5) This week, I have been enjoying my friends and family - and loathing them too. Well my parents mainly, but both for different reasons. Will explain after my list. . .

6) I'm still keeping my eye out to move house. There is this one home that I would like to move into, but having any chance of doing this I need to do a 3 way swap. Me into this lady's home, who's then in to someone else, who they then move into mine! COMPLICATED is all I can say!

7) Have decided on 2 schools for Kelsey. And one is way out of catchment area, but will try and will just wait and see.. I leave it into the hands of the gods.... What will be will be.

8) We have now got new bikes, all apart from Megan, as I need her to learn first on Kelsey's old bike, so this way she wont scratch it by falling off. And have been out bike riding, but not yet taught Meg how to ride on her own. She has fallen off a few times, but that was only in the back garden. The weather at the weekend was rather pants!

9) ^^AS above - Have bought 2 new bikes. One for me, and one for Kelsey.

10) Finally one thing I haven't yet done, and that is JOIN THE GYM! Will do it next week (hopefully) :-)

11) Start swimming ^^ Again, not yet done this, as I am not allowed to do this for a couple weeks.

12) Have started saving for going to OZ & NZ! Woooooooo!!!!!!!


Okay, went to Harefield for a Transplant Check up on Monday last week and all is really well. My white cell count is up, and my albumin is up, and my CRP is -1. To my knowledge it has never been this low even when I was healthy with my old lungs! So Wooop Wooop To this. And this time, I got a photo with my other good friend Lorraine, who at the weekend went to ASCOT! OOOOh, next year I must make it on my list of things to do! :-) Anyway in the morning, I had arranged my dad to come over and take my girls to school so I can set off at 7.30 at latest to arrive in London 9.30-10am. If I leave any later I would never make it in time to take my immuno tablets. Anyway, Kelsey had left her towel on the floor from the night before and I had asked her to pick up it up. So I shouted at her as mums do as she didn't do what she was told. Then my dad butted in saying I can't tell her off for things I do. And I said she does as I say not as I do and anyway I don't leave towels lying around, "oh what about the cushion on the chair outside, and I'm like, I didn't go outside last night mum did, as she smokes, she sits on it. Then he started going on about cat poo on the front lawn - knowing full well as I had transplant I don't go near that as is dangerous. Then he started shouting in front of my girls, saying THIS IS WHY YOUR MOTHER AND I USED TO ARGUE. He said, not actually said, but shouted this again, but mum never snapped and just ignored his ranting and raving... To which I nearly told the girls to go upstairs as I didn't want them to listen to this, and then I just said if your going to carry on just go. Then I said, I only said yesterday, what I say to my girls is how I want them to be bought up and its not up to him, as I said what annoys me most, is when I say to them, go and give gramps a kiss goodbye, he would say, oh leave them, they dont have to, so I stopped asking them too, and then he came out with I WAS NEVER ALLOWED TO GET AWAY WITH WHAT YOUR GIRLS GET AWAY WITH, I WAS ALWAYS MADE TO GIVE KISSES!!! Urrrrgh, I cannot win... This is what I told him, and so from now on, if I tell the girls to do something they do it and im to have no more interfering from him. And what does he do. SHOUT - TELL ME HOW TO BEHAVE WITH MY GIRLS.... Crikey my dad used to smack me all the time, id only have to breathe the wrong way, ironic having cf... But no, that was taking it too far, but I did used to get smacked allot as a kid, and I remember once, being 18.... More worried that he would find my tattoo and piercing. But that's part of growing up, well it was for me, and because of this, I always said I would never have my daughters bought up in an argumentative environment - and this is one of the reasons why me and their dad (ex husband) split up, as it wasn't fair on them. Unfortunately Kelsey remembers it all, but Megan thankfully doesn't at all, as she was far too young. I just hate it.... I really don't want my children to think its right to shout at one another. It churns my stomach, and I cannot stand verbal relationships too. If you argue, what it the point on being together.... It will only get worse, and as a romantic as I am, I have seen people be together and not argue like my mum and dad did and like me and my husband did, and I believe that watching my mum and dad argue, had a baring on our relationship, and now being older and wiser I can see this, and I would never again be in that sort of relationship or have my girls subdued to that atmosphere.
Anyway, I phoned my friend up just after 7am, asking if she would mind taking the girls to school so I could get to London in time, and the lovely person she is, said YES no problem! But really disappointed in my father. He is supposed to be there to support me, not be against me.
Anyway A Picture Of Lorraine & I At Harefield
Next Week, It Shall Be The Three Of Us, Kim, Lorraine & Me!

I have bought the bins and filled them with celebrations and Haribo's, here is the picture for the lucky NHS Staff!!!! (though I have a confession, I have pinched a few!) Well they are sitting in my bedroom staring at me, saying EAT ME!

Found out that my beautiful niece has CPOX, which is uh'o for tansplantee's. I had a cold sore which arrived Saturday, and so Sunday I called the hospital and they put my on aciclovior 200mg 5x Daily! OUCH! Then Monday I find out about CPox, which I have touch wood no symptoms, and my blows are just getting better. (My predicted lung function is 2.61 over 3.01 At the moment I am blowing 1.55 (on average) over 1.85 on average. But I have blow a whopping 2.19 and I keep getting 2.02 and 2.09 so I think my average Fev1 will be higher than 1.85 soon...... I am really pleased with this, and since riding my bike my fevc and fev1 has been improving somewhat. So i recommend anyone who has had one, go ride a bike... Its much more fun that walking and to me seems to get me more out of breath and make the lungs work harder and your legs get toned too!!! :-) But hey that's just my advice and I am no doctor, I'm just going on experience, - so please don't sue! Here is a pic of me after my first bike ride, sweaty and hot loving my ice lolly. Scars and holes included! :-) And covered in factor 30!!!! Will post pics of our new bikes soon.

Friday night was the evening of my girls summer fete. Last year I was in hospital so I missed it, and I was so looking forward to going. I volunteered to help get the stalls ready. Okay I couldn't lift tables or anything heavy, but I did label the tombola prizes. The first one I labeled was no5 and I stuck it on a bottle of STELLA.. I love Stella I was saying to the other mum's and that I wanted that prize. Anyway in the evening, Megan and I went on the tombola and Megan put her hand inside and picked out no5!!!! We all had to laugh!!! How funny is that..... On the next stall Megan bought some raffle tickets and I looked at the DVD player thinking that looked nice of all the prizes on the table, and come Monday back at school, I found out she'd won it!!! I couldn't believe it...... I wish it was the same with all 6 no's from the lottery!!! :-)

Here Is A Picture Of The Prizes Lucky Megan Won!

However she is far too young to drink the bottle of Stella, so I think I will be forced into drinking that one! Yeah - likely story - forced that is!!!!!!!!!

I am ending here and will update soon.... Megan Today Tuesday had her first piano lesson. Will date more next time........... x x

Saturday, 13 June 2009

Starting Over. . . But How & What ?

Okay, now i'm alive again, to which this week I have never felt so.

I have a few goals and i'm not sure where to start or what to do.

1) Uni ??

2) A Job ??

3) A Puppy ??

4) A New 5 Seater Car & Hand Back my VW SOFT TOP :-(

5) Enjoy my freedom and enjoy my family friends again

6) Look for a new home ??

7) Start thinking about a High School For My Eldest

8) Teach Megan how to ride a bike

9) Buy myself a bike

10) Join a Gym,

11) Start Swimming

13) Go To Oz and NZ next year so I need to start saving

12) And a few more. . . . . . . . . . . . . . . . . . . . . . .

There are just so many things whizzing round my head at the moment, its making me dizzy, and I would like to beable to sit down and think and not jump into doing the wrong thing.

I have my next appointent next Thursday in London, and providing all my bloods come back good, I am arranging a night out in our local town with my firends. I just would like to go out and have a boogie.... Its been so long since I have been able to do things and not be out of breath and cough I am really looking forward to shaking my booty, wether or not its in time with the music I dont really care, I need a night out to be with my friends. I am so very greatful to be here and have this chance of life again, well I cant really say again, as I dont ever remember living like this, and most certainly not ever live with both my girls, to which they are still shocked that I can do things that I have never been able to do.

I have now started to think about what to write to my donors family. It is harder thank I thought, but am hoping to have composed it by Thursday so I can give it to my co-ordinator to pass on........

I havn't mentioned anything about how grateful I am for this gift, I had been finding it really difficult to talk about this side of the transplant; other than being to very grateful to this lady (my heronie) who I shall never meet, I have not been able to sort out my feelings in my head. But now, since I have been out of hospital and I feel so much better and my blips a distant memory I have been able to think more positivly about things. I have learned alot about myself since the transplant too. It wasn't as easy as I thought either, but I feel I got there in the end :-)

A friend of mine got intouch with me not long ago to say hello. Made my day. Hadn't seen him in quite sometime, and knowing that he was following this to see how i'd been getting on, actually touch a nerve and bought tears to my eyes. We were really close at one point (friends only) and I missed him terribly, but made me feel happy to be here, and that this blog has proved useful and helpful for quite a few people and showing almost naked pics of myself havn't been in vain.
Wednesday I took my girls to school for the first time on my own. First time in 18 months I think and it felt great and then spent the day with my niece and great niece. It was peeing down with rain, and thundering LOADS. It was nice. I climbed up 3 flights of stairs and it felt great!!!!
Thursday I spent the day out again; this time I went into town, was supposed to go Wednesday but it was too wet. I was going to go to the Heartlands - My OLD CF Centre, but I hadnt bought from town what I wanted to, which was to take and give to the nurses and physio's to say thank you for all their hard work at keeping me alive, but I hadnt got the bins I wanted to buy so I will go next week now I imagine.

Megan went to a local high school with her class and did a UGLY BUG DANCE infront of quite afew people and at 3pm we were allowed to go to watch the children in the hall do their dance again which was brilliant.

In the evening my girls went to GoodNews Club and Sparklers and I went round to my friends house for Tea, which was nice... First TIME EVER!!!!!!

Friday I stayed in for a little while and then went and fetched girls from school, for the 3rd consecutive day, and i'm buzzing!! I still am.... So happy right now. Megan was very happy that I went to see her at praise assembly, and it was great to see alot of my friends too..... I am slowly getting to know all the children now, as I never really had chance before, so this time next year I will be able to put all names to faces :-) Watch This Space! :-)

Harefield On Monday

Clinic went really well. I dont have to go back till another 10 days. The following Thursday. My Albumin (spelt wrong) has now gone up, so I shouldn't have the fluid retention nomore, and my blowing has started to improve now. Went to pub for lunch with mum and my friend Kim and her Dad, and we were lucky to leave early and get home for my girls.

Here is a pic of Kim and I 8 weeks post transplant for me and 7 for Kim, I think;
Here is a pic of Kim and I 10/11 weeks Post Transplant for Kim and myself I think; looking so much better. I will try and get another one in another 3-4 weeks.

There is a lovely lady; Lorraine, who too had her transplant at the same time. The three of us were all done within 10days of each other, and Lorraine was lucky enough to have the ex vivo technique for her transplant, which is amazing, and she was the last one to be done and yet the first one to go home and I was the first and last to go home, and Kimmy was in the middle and stayed there. We all have CF too, so is really nice that we all get on and can compare scar sizes and problems too. I call us Harefields Angels, Not Charlies, or better still Martins Angels!! :-)

Friday In London

Being home is great. However the day after, I get full of poo again!!!! And thursday I was in agony and needed to go to hospital. The day before I filled myself up with MOVICOL - nice, and nothing was happening. So Thursday I decide to drink of the lemon drink and added millage of lactulose too. Friday I still hadn't gone, and I was supposed to be going to London to watch a show "The Jersey Boys" - Frankie Valli & The 4 Seasons. So I wasn't going to eat anything for the 2nd day, so I could go and not be in pain and then if I still hadn't gone, I was going to go back to the hospital after. My dad had come to fix my washing machine as it is broke, and in the morning I sent my mum off to the hair dresser as it was to be her birthday on the Sunday 7th June nad ready for our night in London. Anyway, finally I plopped a few pellets out, and then I couldnt stop. All the movicol and lact had built up and I couldn't stop going to the loo, and the pain had eased. We finally set off and took the girls to my mother inlaws and then on our way to London we went. It took us ages to get there, as we didn't have a tomtom and my mums battery in her phone died and ooops no charger!

I had my own personal Tomtom by calling my friend greg. Took nearly an hour on the phone telling me where to go, even down one ways and bus lanes!! So im expecting a letter soon.. Finally we got to our hotel. It wasn't that bad either. We unpacked and then realised that I forgot to pack the tickets for the show!! OOOOOOOOOOooooooops!! BIG OOPS. So I called the theatre and explained (feel really bad for telling fibs) but said that I was in my car and they blew out of my hands. That wasnt a problem, and were told to come at 7.15 to pick up tickets.

After changing into differnent clothes it was time to go out and grab some food and meet a real close friend of mine, Greg. I was so excited going down Oxford St. I have never been to London before like this. I went when I was 16 to go to great ormond st for blowing tests to make sure I was well enough to fly to america.

So this was amazing, espically seeing jane norman, next, a huge primark, mexx, top shop, and many many more, I was in my element.

We were meant to meet Greg in Leicester square, but we went the wrong way out of the hotel and then said we'de meet in Soho. So finally we met and had a coffee; It was so great to see him. Havn't seen him since last Aug I think. I had been not well, so I refused him to come and see me, but now I have to excuse which is fab! :-) We then left at 7 to get to the theatre. We picked up tickets and the lady said, in all her time, they have never heard of that excuse and thought it was really funny. I then went and had my first beer in nearly 2 years. It cost FOUR BLOODY POUND and it was only a bottle! A bottle of Becks, and it was really cold and worth the £4. We sat at our seats and a steward came to us, asking us if we were the Grainger party to which I said yes, why what have we done!? And he laughed and said nothing, just making sure you got to your seats okay and if there is anything you need, his name was Paul and to ask for him, and I replied that id like to go back stage and he said that probably not be possible, but if you exit that side of the theatre you will end up by the stage doors and when the cast leave they will come out there. So I then asked him if I could have pen then please for autographs and he laughed and said Ill get you one during the interval. So off he went and we were sat ready to watch. The first half of the show was brilliant. Here are some photo's;

Then Paul came back to us with a pen and a piece of paper. He said that if I wrote my address on it, he would get the cast to sign it and he would get it sent to my home after. So mum said give him both programs and i said NO, just incase i can get them to sign it after the show outside. So we gave Paul one of our programs and we kept the other.

At the end of the show we left slowly and walked up the many stairs to get outside, now normally, i'd have struggled to walk up the stairs as there seemed to be about 30-50 of them. We go to the top where quite a few fans were there. And mum said she felt like a groupie! Some of the stars came out and the fans were calling them by their name (obviuosly) but mum said oh they know them and I said um, no I dont think they do, I think they are just crazed fans, LOL. Anyway, the first one to appear that I asked for photo and signiture was The Very Tall one,

who was their manager,and he was 6"4! He really had to bend down to pose for pic. Then the next one out was Stephan aka BOB, and he was really nice.

He said that he hadnt signed up to the donor register but would. He was genuinally interested which was nice, and then the next one was Glen

who came out and he to posed for a pic with me, and then Glen went off into London, and then BOB came back and some fans shouted ouh you cant get enough of us. BOB went back into theatre and then came back out and pointed at me and my mum saying you two come here, so we went in through the stage door and realised we were back stage! How Cool Is That!

He said Ryan (aka Frankie Valli) would be up soon, he still got to get dressed. Before I knew it he was there stood in underpants and socks! Im LIKE WOW!!!!! I said he didnt need to put a jacket on and that he was just right the way he was, as Philip AKA Nick offered it to him, so bless him, I got a pic with the three of the Jersey Boys as the 4th had gone, but was brill. Mum who was walking backwards to get us all in the photo nearly fell down the stairs and Ryan went and grabbed her and stopped her from falling and mum went all flustered!!! (well wouldnt you, an allmost naked man grabbing you!?) hehe;

I asked Ryan if he would sing the first bit of Sherry Baby to me, to which he did and OMG! Quivers!!! I first saw the boys on the royal varity show last year and then Ryan on Theatre Weakest Link, and that was it, I really wanted to see the show. All in all, for the first night out since my transplant it was a really REALLY good night and throughly enjoyed myselff and it was a treat for mum's 51st Birthday too. So on our way back to the hotel that night I was bouncing back and it was raining and I got very wet!


We got to the hotel and the lights wouldnt work, so mum went to reception and they said you need to put your key card into the slot in the wall to make the lights work! Oh yes, what a dope, I forgot that, its been sooo long since I been to a hotel,

Normally just of late, we have been in a caravan and I use windows to climb in and ffall through rather than use a key and a door!

I slept terrible that night, needing the LOO :-) most of the hours through the night and my bottom was starting to get rather sore - yes, I have just told you that regardless of needing to know! :-) sorreweeeee!!!

It was bloody awful weather the Saturday and I decided not to go shopping in Oxford St, and we got in the car and went home. Breakfast in the hotel was £17 per person so I suggested the services on the way home. So we left London and got to the service station and breakfast cost us £16 for the both of us which was much cheaper.

The rest of the weekend took up of me tidying the girls bedroom and good food and a fantastic roast dinner on my mums birthday (sunday) at my nan's house. Sunday morning I went to Tesco all on my own and drove myself (wow you may think, but was the first time I drove car on my own and shopped on my own. Its really mad what people take for granted, and do every day without thinking, and I so SO enjoyed it, and I think it showed, I was so exicted :-)

More of this to come I am sure and cannot wait.. The next day (Monday) is another trip to London for a check up the hospital.....

Sunday, 7 June 2009

Finally back home after some Blips! A Month On:

I am very sorry for lack of updates. No excuses really, apart from a few blips. Now that my lungs are working, my bowels have decided to kick up a big fuss. Cystic Fibrosis effects not only the lungs, but the digestive system aswell. I have to take enzymes everytime I eat to help digest the food I eat.

Anyway, what happened was I went to clinic after being home a week and getting on with walking and my lung fucntion steadily improving I start to retain fluid again on my feet, but the doc was pleased with me and gave me some water tablets (frusamide) and went to walk out, and Ruth the nurse grabbed me and asked me what Martin had done with my immuno tablets and I replied nothing why and she replied back, oh well because they are low. Oh I said, okay, no worries, so how many tabs do I need to take to get them up, but she kept putting the answer off and said we need to talk to Martin first, and then he saw my new results and said "Sally you are giving me a head ache" I thought charming hehe, anyway, my levels should be in the range of 280-320, I was usually running at 300, anyway, my levels had plummited to 134. MEGA DANGEROUSLY LOW. So I said I have to come in don't I, and he sadly nodded. Damn I was doing so well. Neiter of us could think what had happened other than I had a peg in my tummy, which I was asked to take it out as I no longer needed it anymore, and what was happening when I drank Tea, Milk, or Orange Juice (mainly when I drank OJ) did what I drank come out of the hole that had been left by the peg. (A peg / gastrostommy) is a tube that sits outside my tummy and goes directly into my stomach which I have posted previously, which was to help me put weight on, and now I nolonger need it. But now is causing problems as is NOT HEALING :-(

So I had to go into hospital and go on a drip to stop my new organs being rejected. I felt tired and rough ever since saturday /sunday just not myself, and on the Friday did I start drinking Orange Juice and since then the acid in the juice had made the hole a whole lot bigger and more fluid was escaping, and we came to the conclsion that I was loosing the Ciclosporin (immuno's) through the hole, so it was decided between the doc and I that I was to be changed to Tacrilimous another drug to prevent rejection. This took a long time to get levels right and to this day 4 weeks on, they are only just settling down. When I was first changed, I lost my healthy appetite and I was a mood mare....... I was behaving like a 5 year old spoilt bratt and moaning at everyting. It was worse than PMT let me tell you. Finally I was allowed to go home again, at this point since being discharged after 7 weeks post transplant I had only been at home 6 days. I went home, on tac and was going to my local hospital for blood tests and was sending the samples back to harefield for them to be checked and this was a great routine. Then, this being tuesday, I went to POO and that was the last time for a very long time. By thursday evening I was in AGONY. But still I carrried on and ate my lovely steak fillet of Salmon, new potatoes and brocli to which I cannot stand the site or smell of now :-/ Friday morning at 4am I woke up as a cripple, I couldnt stand up straight and I was bent double in pain. I phoned harefield worried that I wouldnt be absorbing the immuno's and what to do. They said go to local hospital and get some gastrograffin from there. Gastrograffin is a brilliant laxative and makes you go really quickly, but stinks of anisead. But we went to A&E and they were great. They put me in a room and instantly reversed barrier nursed me and was fab. I was given pain relife (pethadine) no soon as the pain was gone, I was able to sit up and thats when the vomiting came. All the food I had eaten that was still in my tummy came up in chunks. (nice) hmmm...... Then I felt better and the pain had eased a little. I had both chest and tummy xray. I was moved to one of the natal wards (as only place with a side room for me) and the worst thing was, they wouldnt give me any pain relief IV, :-( I had to have it IM. (in the muscle) which didnt work as well, and then anti sickness I refused as I had been told that having that IM is totally painful. Then I was able to be moved to the surgical ward upstairs one or 2 days later, which meant more nurses to patients and I could have the care I needed. There was talks of surgery as my bowels were not moving and I was vomiting blood up by then, no green bile like I had in the past. In the past (last time 3 years ago) I had the same problem and I was bringing nie green grass coloured bile, but this time it was brown and like coffee grains. I had then bloods taken and they were sent by accident to the QE in Birmingham, NOT Harefield in London, so I had to wait another day to see what my levels were. The first time they were in theraputic range, then I had them done again and they had dropped, by now I was getting worried, as I still hadnt poo'ed and I was being sick all the time. Then it was decided that I was to be transfered to London. Which is where I wanted to in the first instant. I had Klean Prep, Gastrografin and suposatries and nothing, I asked for an enema but they were not keen to give me one of those this time, saying it was dangerous. So it had been arranged that I was to be moved to London and before I went to have a CT scan and a camera down to see what was going on, but these tests were not done and finally I went to London. I had some good pain relief and anti sickness which I had IM in the end as by now I had over 11 canulars in my arms, hands and now I had one in my FOOT. . . again (nice!) The anti sickness Cyclozine was tissuing each venflon I had, so I decided to have it IM, and you know what, it didnt hurt like I had expected it too, so I was happy and then I was having the pain relief via the canular in my hands/arms and foot along with fluids which I started to retain and blow up like a doll. I then couldnt breathe as it was collecting on the lugns again like it had done before when I needed 2 more drains, and I didnt want to have surgery there again.

Believe it or not, the ambulance who came to collect me to take me to London, was great, it had hardly any suspension and it must have kick started mu bowels in to working, as when I got to London which was almost week later from my first admission I was able to poo out the hard bits of rock, which was black and really smelly......

The next day I saw our doctor which was now thursday or friday I think, and he was slighly concerned to my levels being low and I was put on a drip again to make them better and was looking into more tests on my tummy, but as I had now finally been to the toilet he was relieved, but couldnt understand why the bleeding, but the sickness settled and after 6 bottles of gastrograffin I was going, it finally just just went in one end and came out the other the same way. I was neeeding lots of lactulose and movicol. As the pain came bad again ever time I eat and still does now, so if I take lactulose before I eat I dont get so much pain and if I have movicol before bed it comes out nice in the morning. My usual is twice a day and to not go for all that time, it was agonising. I dont moan about a little bit of pain,only when it gets that bad, I dont even take headache tablets for head ache only foot ache!! hehe - joke, but no, I suffer in silence, but I do show off about pain when its at a scale of 8-9. 10 being the worst. By 10days after I was first admitted I was almost ready to go home. My mum came down to stay with me, as I had become so weak from not being able to eat I couldnt do alot for myself again and this was frustrating. Was also good to have company too. I decided that I wanted to go shopping and have my hair cut, so me and mum went into Uxbridge. I bought some new clothes and sure enough had my hair cut. Wish i'd had it abit shorter now, but hey ho, could be worse. But you know, whilst I was shopping I felt rough as a dog. I couldnt walk, I felt so out of breath, and my heart felt like it was going 10 to the dozen, so I didnt really do alot, and never have I walked so slow. We went back to the hosptial and I checked my oxygen sats and they were fine at 97-98% however my heart was 120-125, slightly higher than it had been at 97bpm, and I was shaking like a leaf. The doctor came to see me later on that night and said Sally, please do not take any immuno's tonight or tomorrow morning, they are too high. I asked what they were and the range of tac should be between 5 and 10. Mine were in the 20's. I asked is this why I feel so shit, and his reply was probably yes. So basically I had to wait for it to wear out of my system. That night I was sick again, for the first time in about 5 days. It took me over a week to start eating again and then I was just having soup and abit of bread, hardly anything to keep a mouse alive, so this feeling was horrible. The next day I woke up early and felt good. I got dressed and just felt okay. Today is Tuesday now, and the docs came round in the morning and said i'd be in for a couple more days atleast. Then a few hours later the boss man came round and was shocked to see me and said why am I not home, I gave hi a brief update and he said, well you are pooing now, so if you'd like go and have bloods done at home and send them in. So I looked at my mum and then back at him and said great. I had a few tests done before hand and then I was aloowed to go home!!!! YAY!!!!! So Now post transplant I am now 10 weeks. 3 weeks after my original discharge date. I was excited to go home as My girls didnt know I was to come home and the friday following this Tuesday I had a show to go to in London "The Jersey Boys" Frankie Valli & The 4 Seasons. So great, me and mum were on our way home. Mum was actually going to come home this day anyway, so it was a good job she hadnt left before I saw Martin.

Coming home was brill. I went round the back and tapped on the Window where my mother inlaw was and Kelsey first looked up and saw me, shouted my name and then Megan too. They opened the door to which I recieved a huge heart warming hug by nearly knocking me over. I had by this point lost most of the fluid off my lungs and pretty much everywhere else too. My legs were like Sparrow legs, very thin.

So Finally Home, and this time, hopefully to stay, and am hoping that all the blips are a thing of the past.

Ill end here and finish off tomorrow or tuesday. I have some pictures to post, but need to sort them out. Bye for now x x