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.