Wednesday, 25 May 2011

Bizy Bizy Bizy

OK so again I have been bizy bizy bizy, I am completely knackered to say the least I have been to Devon county show with Stu, Filming for the documentary I'm going to be in, cinema, longleat and finally today hospital.

Me and Stu have started our list of fun things to do on days off and generally just making the most of life, It has been great. To make it all a bit cheaper I have found out about a sneaky little thing that attractions and cinemas try to hide from you, Carers discount. If you are disabled and have someone with you who would be responsible for pushing you about, administering medication and general other carer like things out and about, it means that person can get a discount at most places and that discount is usually half price or free!!! These places don't advertise because they don't want you to really know about these things, but just ask, 'do you do a carers discount' they will be happy to give it to you then!!

Longleat was amazing and I really enjoyed it, we got home and by 6:30 pm I was in bed and then rapidly asleep, I didn't wake till 8:30am today when i had to get up for hospital. I was so tried it was unbelievable. Literally felt like i was unconscious rather than asleep.

Today me and mum ventured to the hospital, change of IVs same as ever Wednesday. I saw my doc and we discussed pegs again as I'm still stupidly skinny and under weight, 50.8KG you may think that sounds alot but I'm 5ft 8" so it really isn't for me. Some how I agreed to have a peg fitted in 5weeks time if I hadn't put on any weight. I guess I finally got to the point where I'm struggling so much with so much I can't be struggling to force myself to eat as well. I struggle to eat now because the shere breathlessness is just to much ot handle. Also as my weight gets lower I actually feel fatter, not fatter really but my tummy starts to stick out more, partly because I am really bloated at the moment as the bi-pap has a tendency to inflate my stomach leading to awesome burps and farts, but that's ok as my farts smell like roses. Partly because my arms and legs get so skinny my cf stomach becomes more sticky outy. So I have given in to the peg, if i can't get my weight up.

We then ventured off to have a little shop and I brought a few bits :-) but my 02 ran out as its been playing up and now I'm back home knackered again and ready for a sleep. Its nice getting out and doing things, but i have literally not had a days rest and now I'm well over due for one. I'm going out for lunch tomorrow and Im having the film crew over Friday to film with me and Stu but the weekend i am litrally going to rest with a few good DVD's!!

My friend Chantelle got her call the other day, I received a text at around 5am and the lung were a good match so it all went ahead at about lunch time. Everything seems to be going well, which I'm so happy about, fingers crossed it Carry's on a smooth ride for her. Me and Chantelle had our tx assessments all around about the same time and she went on the list a week after me, It was great to chat through and compare experiences and I hope I can soon chat through and compare transplant experiences with her soon, providing my call comes. I feels so happy for her, Chantelle has a little boy and therefore I feel it was so important for her to get her call as quickly as she did, so she can start to run around with her little boy!

On a nother transplanty note, here is the last article of the bombardment of articles the express and echo have done on organ donation, It has been a brilliant campaign, where they have included all points of view for organ donation and transplant. The last article is about me again as i am the face of there campaign Finale article also if you search the site for organ donation all the previous articles come up.

That's all I have to say for now, so I'm going to have some snack and a nap as I am exhausted.


  1. Hey Kirsty
    Just catching up with your blog and its great to see how much media work you are doing! Try not to tireee yourself out though, I know how hard it is and I dont need a transplant!
    Ive been thinking of you this week with Chantelles news, it must be hard for you as its great but also there is that 'why not me?!'. So sending you some love xx

  2. Hello,

    I've been reading your blog for a while now but don't think I've commmented before. I received a small bowel, liver and pancreas transplant four and a half years ago.

    I have a CEA cinema card which enables a carer to accompany me to the cinema for free. I find it really useful because I'm not visibly ill and you are entitled to it if you receive any rate of DLA :)

    Take care,
    Moll x x

  3. Hi, I've been reading your blog for a while and wondered when the documentary will be on tv, would like to watch it!! Hope you don't mind me asking

    Kind regards