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.

No comments: