Monday, 14 November 2011


I'm fat and its making me really upset, i look preg and i feel so ugly but i just cant seem to stop myself from eating. I'm over eating that's the problem I'm having and its because of the steroids I'm on but also the fact that food has never tasted this good to me before that I'm going a bit mad with it.
Matt says i don't look like i think i look but he cant understand how i feel, he says how can i be fat when i can still fit in size 8 jeans and 6-10 in tops but for someone like me who has never really filled out a size 6 before i now feel massive!!
I'm going to join the gym this week with my friend Laura and our friend Aimee also is a member there already so that will be nice, be a good thing to do every few days and i will get some me time away from the house, Matt and Connor.
Matt is getting me a bike for my birthday in dec but were getting it when he gets paid at the end of the month so i can start getting fit right away.
i cant wait to go try all the bikes and pick my new one, i haven't had one since i was around 13!! that's like 13 years ago lol that's half my life!
I'm also going to start swimming too, its going to be so much fun. i cant remember the last time i went was maybe when Connor was around one years old. he hasn't been swimming since then too so i would like to start taking him to swimming lessons next year in the summer time.

I ave got lots of my Xmas gifts sorted out this year already, i worked out how much i have spent on Matt and its around £300 already and i haven't got him that much. i wont say what i have got him just in case he reads this!
i need to get some little bits and bobs for Connor too as we have got his main one already, we got him a go cart, hes going to love it. i cant wait to see his face when he opens it.

Sunday, 6 November 2011

Hair loss

Hair loss is something you think of old people having to deal with not something you want to have to think about when your 26 years old and yet here i am looking on the Internet for help with my problem of hair loss.
Its really getting me down, all my life i have had lovely thick hair and i have always been very proud of it, that and my long eye lashes were always my best fetchers and now its all gone to pop.
I have also been told to cut down on what I'm eating as my TX team don't want me to start having other problems from being fat! i have never been told to cut back on food but always been told to eat and eat and eat till i cant fit any more in and then eat some more!!!!
i think this blog is more of a down one today and not much else.

My lungs are doing really well at the mo and i haven't had to stay over night in hospital for a month, and i don't have to go back to TX clinic for 6 weeks! it feels like things with my blood are starting to sort them self's out and i can start to relax a bit and start to plan stuff and enjoy my self.
My LF is slowly starting to go up its now at 1.69 today and last week at TX clinic it was at 64% and I'm really working on it for it to be at 70% or more by next clinic.

Connor being at school now is giving me lots of time to sort the house out and get it how i want it, for the last few year i haven't been Abel to do anything but let Matt sort it all out but now i can i have so many plans and ideas that I'm slowly putting in to play with the 1st thing being sorting Roxy out, she has been eating everything lately from Connors toys to my pills and doors and carpet! she started to get out the hallway when we went out so she was put in her cage so she was in one place but she manged to brake out of that too, so i got my brother to fit some big locks to the doors of the kitchin and so far so good that has kept her in there when we go out.
Next i want to put new doors in all the rooms and then sort out the garden, me and Matt was raking up all the dead leafs today and took them down the dump site so the garden looks better already.

Me and Connor did some baking today and made mince pies with edible glitter on them! there were lovely and i had one with a cup of tea while they were still warm and it was (if i do say so my self) the best one i had ever had before lol
Next up is making cup cakes for my mums birthday next week, i cant wait to see how they turn out, my friend Sammie gave me a recipe for cup cakes and the butter icing topping and i have more glitter and sugar flowers to go on top of them.
I'm really getting in to this housewife job now and love being able to do everything, i even like doing the hovering and ironing!!!
So all in all everything is going well apart from my hair loss.....

Sunday, 25 September 2011

Hospital Life

I haven't been updating my blog, I'm not sure why as i have been in hospital alot since TX and have had the time but i guess i don't what to moan about being in hospital more now then i was before i got my new lungs. i don't want to seem ungrateful in any way because I'm not, far from it in fact, I'm so happy I'm not on oxygen and not in a wheelchair anymore, i love the fact i can play for hours with Connor without getting tired and out of breath, i can walk my dog Roxy every day, i can do the house work and even love doing it after all these years of sat on the sofa while Matt cleans, i love the fact i don't cough and that i just feel well every day that i wake up.
but with all that I'm still in and out of hospital alot. its not the lungs, there in great condition and the Dr couldn't be happier with them but the anit rejection pills I'm on have messed my bloods up a bit so until that gets sorted out it looks like papworth is going to be my 2nd home for a few months yet.
i came in on the 8th this stay and its now the 25th and I'm still here and looking at another week or so yet.
fingers crossed i don't go mad before then.

In other news Connor started school 2 weeks ago, the Dr let me home on his 1st day so i could walk him to school and back but then i had to come back to the hospital and have only seen Connor 4 times after that :( i miss him but if i don't get my bloods sorted out he wont have a mummy to walk him to school so because of that i need to stay isn't making it easier knowing that.

I'm going to start work at my dads next month doing 16 hours a week while Connors at school, i cant wait as i haven't been to work in years and years. I'm really looking forward to it, makes me feel like I'm doing something with my life and not just sat wasting it.

I'm going to try and up date this blog every week now as i think it will help me with all the hospital stays.

Saturday, 2 July 2011


What a last few months we have had, i don't even know where i should start.
first things first i got my new lungs, and there very nice new lungs as it goes too, i got the call at 5.30am on Monday the 23rd may 2011 and went up with my mum in the ambulance and Matt and my dad followed up in my dads car, Matt's mum and dad came over to look after Connor.
when we gott there i had bloods taken and was taken to the ward i would be going on when i came out of ITC after the op, after the new lungs were all given a good once over and given the all clear i was taken down to start me new life at around 12.15ish. i shade a few tears as i said my see you soons to Matt, mum and dad and then woke up to hear people taking and felt tubes being taken out of my mouth and nose and then after a bit i could open my eyes and see my mum and Matt and i think my dad was there too...i found out it was around 10.30am on the Tuesday so had been out for nearly a whole day but it only seemed like i had close my eyes for a few mins.
i had four chest drains in, two at the front and one either of my sides and a big dressing down my chest from my collar bone area to just above my feeding button. i don't think i was really in any pain that i can think of at that time but i was being sick once i started to eat or drink anything so on the second day (Wednesday) they stopped my morphine and just had me on iv paracetamol and tramadol, also on the Wednesday they took out the two front drains and then the next two the day after that.
i was doing well but as it sounded like i had some gunk stuck i was given a bronch on the Friday and felt much better and not gunky after that and then was taking to the post op ward on the Saturday were i stayed for nearly two weeks and then was sent home! i was in hospital altogether for 17 days, i was told i would be in hospital for around a month so i was very happy that i was doing so well that i could be sent home after such a short stay. i must have been doing very well indeed.

since then I'm getting stronger and stronger and have been back in hospital for another bronch at 3 weeks and now I'm back in as my LF has dropped but apart from that everything else is great so there not to sure whats going on but to be on the safe side they have got me in again to have 3 days of iv 500mg steroids and a bronch at the end to rule out any rejection.

apart from this little blip I'm doing so well and I'm so proud of myself and cant wait till I'm fully healed and can start living my life and getting a job and running and playing with Connor, there is so much and I'm just so happy i was given this chance of a 2nd life with Connor and Matt.

that's the gist of it but i will update more as and when it comes back to me as the first week was a bit of a bluer to me as i was very sleepy and not really with it much.

Tuesday, 26 April 2011

Not A Good Week.

Not a good week at all, i started i.v's on Wednesday 20th April but got to do them all at home so didn't need a stay in hospital.
I'm feeling a little better so that's a good thing but i have a dry cough now that's driving me mad!

My great auntie Pat passed away on Saturday after a hard battle with cancer, she hadn't been well before they found the cancer. we are all very upset, my mum and nan cried so much :( but she is not in pain now so that's the main thing.

Tuesday, 19 April 2011

Not Feeling To Chipper

I'm feeling a bit off today so thought it was best to ring the hospital and start some iv's as i know i have to make sure my CRP is down now ready for TX so its best to be on the side of caution really.
I don't think they will keep me, they need the beds and i don't want or need to stay in but to be on the safe size i will be taking a bag with me just in case.

Today has been so stressful with Connor and Matt, Matt's stressed i think because he is worrying about me and he is trying to do all the house work and look after me and Connor and Connor is at that age where he is pushing the line to see how far he can go. All that makes for a stressful house to be in.

I wish i get the call soon so i can start being a real mum to Connor again and Matt can go back to work, life is just at a stand still and its not nice, its not living its just surviving.

Saturday, 16 April 2011

Transplant Bag

What to put in my bag, i cant think what to put in. I have had a lot of friends tell me what they put in but i still don't have a clue so still don't have a bag packed after 8 days of being on the list.
I will tell you what i have already got and what I'm going to get to put in and then let me know if there is anything else you can all think of.

* 2 new sets of vest/shorts pj's in a bigger size (when it gets cold i will add a set of long pj's too)
* Dressing gown/slippers
* 2 sets of clothes and a pair of trainers for once I'm up and about
* Flannel
* Towel, bath and hand.
* New toothbrush (not elec) and new tooth paste
* New pack of baby wipes and face wipes
* Pack of 8 new disposable razors
* New shaving gel
* Shampoo and conditioner
* New hand gel stuff for bugs
* Body wash/deodorant/cotton buds/small make-up bag/new lip sil
* E45 cream
* Hair brush/bands/clips
* DS game
* Note pad and pen
* Puzzle books
Bits to put in on the night
* Snacks/drinks
* Mobile phone + charger
* Laptop
* Mags/books
* Meds that I'm on

(But some bits in for Matt for a few days too)

I cant think of anything else at the moment, can anyone else add to that?

Tuesday, 12 April 2011

Life As We Know It

This last week has really been in the fast lane and so much has happened.
First we found out on Friday 8th April that I'm now on the active list and now just have to wait for a phone call from a privet/withheld number.
I'm not at all freaking out about it, I'm really not expecting the call if you can do that? might just be me being odd, everyone else might be running around like a headless chicken (*sad face* - will come back to that one) I'm very happy and clam about it all and just being too laid back maybe? i haven't even packed my TX bag yet, but in all fairness i have started! (New face wipes,tooth brush,tooth paste and baby wipes got) but on the other hand there not even in a bag yet.
Coming back to the *sad face*, my mum and dad have been on holiday all week and me and my brothers have been looking after the dogs and chickens, i.e feeding and cleaning them and harry was at home anyway so they were ok and the day before they got home (Friday)  we found a dead chicken! stiff as a board she was, poor nanny's chicken as said by Connor when he saw the chicken. anyway the inconsiderate chicken passed away right at the back of the chicken pen so it meant someone had to get in there and get her out...Lewis got the short straw and with some marigolds he went in and got the chicken out and popped her in a black bin bag and then took her and put her in a biffa bin - very dignified send off...not.
Saturday we picked my mum and dad up from the airport and broke the news of the chickens passing, mum was a little upset but this is the 3rd chicken to pass away now so i think she is ok with it, the first time she cried so much that you would think it was one of her children or even a dog that had gone.
Anyway Connor was with Matt's mum and dad all day Saturday and he come home not very well, he was sick 2 times in the day and then i lost count of the times he was sick in the night but Sunday looked like a better day and he wasn't sick so we thought he was over it...we was wrong and he was up 4 times Sunday night being sick so no one had a good sleep.
On Monday morning at 8am we took him to the A&E as we was worried me might be dehydrated as he wasn't eating or drinking much but turned out he wasn't and just had a viral infection and if he wasn't any better to bring him back in for some penicillin. He woke up today really happy and back to his old self, that was until he started to get the runs! not pretty and not nice, good job Matt is around to sort Connor out and for once maybe my CF has gotten me out of a nasty job.....?

My tattoo is healing up really nice and I'm really happy with them, will upload a photo once my camera is fixed, all the photos i have at the mo are taken on my iPhone and i can upload them from there at the mo.

Wednesday, 6 April 2011

Facebook Group And Tattoos

I have set up a facebook group so everyone on my facebook will know when i have my transplant.
Matt is going to keep it up to date when i get the call and then on how I'm doing after, its better this way instead of him text/facebooking all of my friends personally.
I'm a bit upset with it at the mo tho as around 15 people have left and one asked me to take her off it, i didn't want to piss anyone off with it i you tho that since there on my facebook then they would at least want to know how i am doing...maybe they shouldn't be on my facebook to start with?

I got two tattoos done last night, Connor on my right wrist and Matt on my left wrist :) I'm really happy with them and it was the 1st time i have had a tattoo done without numbing cream haha

anyway i will post again soon when the hospital have rang me about being on the list.

Thursday, 31 March 2011


I'm waiting for a phone call, not the phone call to say that there is a pair of lungs with my name on but the phone call to tell me I'm on the active list now.
I got a phone call yesterday from the nurse that did my smear test last week and she said that it was all clear and that she would fax the results over to papworth so now I'm just waiting for them to ring and give me the good news! very happy, i don't know what they would have done if the smear test had come back with some abnormal cells in it...i don't have to think about that now anyway so there isn't and point in doing so.
I also got a phone call last Monday from my CF team asking me to come in for a blood test and that the transplant team want me to start on some pills for fungal as i have grown some off and on for the last 5 years, i cant remember what the name of it was but i think its common with CF people, starts with a "A", anyway when i got there my Dr was telling me that they like to try people on the pill form of Itraconazole first as the liquid form isn't very nice and most people cant take it but when i pointed out to my Dr i have a button and couldn't i just do it down that if the liquid is better at working then the pill form, it was like someone had turned on a light bulb in her head lol she laughed that she really should have thought of that before! anyway i have been on it a week and half so far and its ok coz i cant taste it :)

My mum and dad are going away on Saturday for a week for there anniversary like they do every year but I'm worried that I'm going to get the call while there away and that they wont be able to get a flight back in time and i will miss seeing them before i go in for the op, what if something went wrong and i didn't wake up again...i would like to see them one last time, i mean its very unlikely that i will get a call in the first week of being on the list but you can never say never can you? i don't want to ask them not to go, they have had a year of none stop working and they need to get away from it all and rest. i think I'm just going to have to take the chance and hope for the best really.
Matt's mum and dad are also going away at the end of April for his mums 50th birthday so we have to sort something else out for if i get a call then, when i get my call me, Matt, mum and dad will all go up to papworth and Matt's mum and dad will come over to our house to look after Connor as its most likely going to be in the night that we get the call so if there away we have to sort someone else to come over in the middle of the night, prob Matt's brother john or my brother Lewis and then in the morning i think Connor would go and stay with my grandad and his partner Cathy until Matt's mum and dad get home.
there is just so much to plan and think about, i haven't even packed my bag yet and don't have a clue what i should be putting in it, might have to ask around about that.

CF wise I'm doing ok i guess, was finding it hard to breath yesterday but maybe that's coz we went up the town to H&M so maybe that took it out of me? its pretty upsetting at how fast I'm going down hill and just thinking about what i could do 6 months ago to what i can do now is really scary.
Matt had to give up his one day at work now as i wasn't feeding myself or doing my meds when i was on my own as i just didn't feel up to sorting them all out myself, he is now claiming income support now, well he has sent off the forms so we will have to wait and see.

Me and Matt went to London last week to meet up with his best friend and his cus who have been dating since meeting at our wedding last may, they make a great couple and its so funny that they both live very close together in London and go to the same bars yet they had never met! anyway i had a really good time and the night flew by, we stayed in one bar, it was a comedy bar and also did food so we found a table and stayed there till nearly 11pm! longest night out for me in a very long time, prob my wedding lol anyway i had a really good time and really enjoyed myself but i did have to undo my bra as i couldn't breathe and eat with it done up lol but one one could tell so that's good, i couldn't eat all my dinner as i was out of breath, i couldn't laugh in case i had a coughing fit and i couldn't talk much coz my voice had go all horsey a few days before but apart from all that i had fun so i guess that's the main thing, i cant wait till i get new lungs and i can go out and not worry about anything like that again, the freedom is exciting to think about.

Thursday, 17 March 2011

The long a-waited answer

Is anyone even reading this blog? prob not haha

Anyway lets get to the point shall we......I'M ON THE LIST!
Well as from the 1st of April ish as i have to have a smear test done next week but I'm very happy about it all and cant wait to start my new life, our new life mine, Matt and Connor.
All the tests they did was pretty much normal and i have had most of them done before so it wasn't anything from the norm for me.
I had my button changed today too and it bleed a little so that freaked me out a tad but its fine now, it was also changed for a smaller one as it keeps leaking so i will see if this one is any better.
I'm going home soon, 15 hours and 20 Min's lol i cant wait, 9am to moz and I'm out that door and they wont see me for dust! i hope i can stay away for a good 6 weeks this time, might even get a call before coming back in haha that's scary to think, scary but good.
The food is so bad in here i don't think i would even feed it to my dog! mums cooking for me when i get home, yum cant wait and just thinking about home cooking is making my mouth water as i type!

I have been thinking of doing some sort of course for when i get my lungs and start my new life, i have always wanted to work with animals but since having all the TX talks i don't think i should risk it (no that your cant work with them, just birds i think)  so i was stuck as to what i could do and then a friend from papworth who is staying in at the moment too who has done a nail training course from ICS so i have had a look and i think i will give that a go.

There is alot more i need to say but i cant think of everything at the moment, theses last few days have taken a toll on me mentally i think more then anything else.

Saturday, 12 March 2011


Back in papworth hospital now, been in since Tuesday and have to stay the whole 2 weeks this time. something I'm not to happy about but i don't think i have much of a choice in the matter.
today's the 1st day that i have woke up and felt well, they changed my iv yesterday as i was getting very sick on the one they put me on.
not good that i have come off it as my Dr said i should stay on the iv to show the TX team that I'm willing to do anything to get a TX but i didn't see why i had to be as sick as a dog to show them that, it would have just made me moody and angry and prob a bit depressed on it, not something i wanted.
i do really want a TX, more then anything in the world, i not only want one but i need one, i need to be here for Connor i need to see him grow up, i need to see him grow in to a man...i need to be his mum, i just need a little help to fulfill that.
i have a lovely bit of art work on my wall in the hospital that Connor did for me at school, I'll try and put load a photo of it but not sure how to do it from my phone, Connor broke my cam the other week and i haven't got another one yet.
Connor came up today with Matt and we all went out for lunch, it was lovely and Connor was so clingy with me, Matt said he is missing me.
I have missed Connor so much and i have only been here for 5 days! over a week left.
i start the tests on Monday, I'm not sure what to except so i guess i just get up and ready by 9am and wait for someone to come see me.
Matt is coming up to be with me for every day of the tests, i need some support.

there is a lot of things i have been thinking of doing when i get my new lungs, go to Italy for a lovely Holiday (not been since i was 16) i want to move house, i want to work, i want to buy my own car, i want to stay in a London hotel and walk around London all night and see all the diff things there are out in the world.
so much more, I'll have to do the header thing on here when i would it out lol

I'm back on steroids so have been eating so much! good news i guess but not for my sugars.
my mum has sent up lots of cans of soup for me to eat....i dint know what she was thinking, there is like 10 cans in a bad and that's it! lucky i got some bread while i was out today, looks like soup for tea tonight!!

i will prob next blog after my tests, fingers crossed for good news............not sure what i will do if its bad......

Sunday, 6 March 2011


Why has it gotten so hard to breathe over the last few days?
I don't know how people do this day in day out, its a very scary thing, something that i have taken for granted before.
i mean don't get me wrong, i have had bad days before when i cant breathe well at all and get very out of breath and tired but nothing like this.
I'm now worrying that this is what its going to be like from now on, walking in to another room kills me, walking up the stairs kills me, bending down kills me.
i haven't ever been scared about my breathing before, i am now.
i have even asked Matt not to do his one day a week at work to moz coz I'm scared i wont be able to even get myself a cup of tea let alone make lunch for myself.
this is a pretty down post today.

Matt is worried, i can see it in his face even if he wont admit it.
every time i cough or catch my breath there is a look in his eyes that tells all.
Connor on the other hand pats my back and asks if i need a glass of water :) love him. he is far to young to understand what is going on and i just hope i get my new lungs this year so he is still young and wont remember it much.

going to ring papworth to moz and get myself a bed to start some iv's. i want septrin to give me a good shot.
I'll prob still be in for when i have my TX tests next Monday too.

Monday, 28 February 2011

Transplant and Car's

This well has been one of the most scary, hard, upsetting, exciting, stressful weeks of my life.

Last Monday i went for my first TX clinic with Matt, it was good and i know a bit more about what I'm going to be letting myself in for but what i will be getting back far more out weights the bad.
The Dr, Jas was his name, was a very softly spoken middle aged man with white hair and prada shoe's!
He made me feel very at ease with the whole thing and gave me all the facts and info and asked if i wanted to go away and think about what i wanted to do next but i said no i already know, i had been thinking about this for around a year now or so and my mind had always been in the same place, pro TX.
I have never once quested if i should really have one or not, i only have to look at Connor to make me stronger, there is no way that i will ever stop trying to stay alive because if i did that i was giving up on him in a way. I wasn't ever going to do that.
After talking to Jas i had to have some bloods done (5 bottles!) and they didn't have the baby blue butterfly needles that they use on the CF ward so it took 2 trys and and big needle for him to get the blood that the nurse needed. (i still have the bruises to show for it)
When that was all done with Matt held the cotton wool on my hand to stop the blood and im not sure if it was him holding my hand or just the fact someone was but i just started to cry, i felt so silly coz i wasn't upset with anything that Jas had said and i wasn't in pain, i just started crying.
The nurse was lovely he rubbed my back and said that it had been a big step for anyone and that it was good to let it out and have a good cry once in a while, after that i was fine.
Like nothing had happened.
I have just today got my app for my 2 day stay for the TX test, 14th march till 16th march. scary.

We also ordered my new motabiliy car this week, were getting a new C-Max and it will have my number plate on that my mum and dad got me for my 26th birthday last year.
I cant wait, its in panther black and looks fab!
We should be picking it up on he 23rd of may so a few months yet and we added a extra pack on that comes with...
Active Park Assist (Ultrasonic sensors confirm whether a gap is large enough to park in, and then operate the steering while you control the pedals)
Front And Rear Parking Sensors,
And comes with Power Fold Door Mirrors.

Sunday, 20 February 2011

Cross Stitch

Forgot to say in the other post, I'm not in to cross stitching!
I'm doing pretty good so far, I'm doing a forever friends one for my friends little girl. it was for her 1st birthday but that was a week ago and I'm still only half way lol so she may be getting it for her 2nd birthday at this rate.
you would think i would have got it done with not working but i have to be in the mood for it and not too tired to do it.
i will put a photo up of it once its all done


I'm very unsure about to moz app with the TX dr's...i don't know what to except or if they will do any test, i think the thing that is getting to me the most is that they could turn around and say no or that I'm too well.
Half of me thinks I'm to well but that half of me is the half that sits on the sofa all day bored, the only hard thing I'm doing is breathing and most of the time i don't think about it unless i get up and walk, but then if i do get up and say go to the toilet or fill the dishwasher or even make Connor something to eat i feel it, i feel so tired or breathless and just not well.
New lungs is the light at the end of the tunnel because i would hate it if this is all my life is, not living just surviving from day to day.
I cant work, i cant play with Connor, i cant take the dog out for a walk, i haven't been shopping since before Xmas and even that was with me in a chair with some one pushing me.
day to day life is getting hard.

Friday, 21 January 2011

Lost In The Post....

My last six months plus of blog updates must have got lost in the post...

I don't know how i have left it so long without blogging, it wasn't like i didn't think about doing it i guess i just never had the time to and this today wont be a long one as i just need to get my swing back in it to i think, slow and steady.

Ok here is a few small things that have been going on in the H household, we have got a puppy (well she is 6 months old now) Matt has given up work to look after me and i got my letter today for the date of my transplant talks...that is but a few things and i will fill you in more in the next instalment of my blog.