Sunday, 28 July 2013

'Sometimes it's easy to feel like you're the only one in the world who's struggling, who's frustrated, or unsatisfied at barely getting by. But, that feeling is a lie and if you just hold on; just find the courage to face it all for another day, someone or something will find the way and make it all okay. Because we all need a little help sometimes, someone to help us hear the music in the world. To remind us that it wont always be this way. That someone is out there, and that someone will find you.'

I had such a busy, fun week :D Iv been home on IVs but iv still been going out and keeping busy. This week I got my hair done, nails done, went shopping with my sister, went Woburn safair park with my brother and sister, made a cake with my cousin, decorated the hall for my nans party, went for a drink with both my grandads, went to the drabbit with my mum, step dad and there friends and went to my nans birthday party!!  ALL WITHOUT OXYGEN!! woo! :D iv been so busy and today i think its all just hit me, iv been so tired today and been in bed most of it on my oxygen, but i still feel good :D I have clinic tomora and the plan last week was to come off ivs for a couple of weeks, hopefully il last that long like before :)

The safari park was amazing, AND i drove there all on my own! Very proud of myself as i had to go on the M25 & M1 and iv never done 3 or 4 lane traffic before, and then on  my way home i didn't use the sat nav, i went a different way and got home without getting lost! woo! proud!! lol

So after that busy week im having a good rest this week and im doing nothing! Apart from Friday as iv got my 10 month Transplant review :) 10 months!!

7,524 hours on the list.

Sunday, 14 July 2013

Ants in my pants!!

'Have you ever wondered what marks our time here? If one life can really make an impact on the world? Or if the choices we make matter? I believe they do. And I believe that one man can change many lives' 

I'm happy to report back that my weight gain has been going really well! Iv been hitting my over night feeds hard and eating as much as I truly can! Yesterday when i got dress i noticed my shorts i had been wearing were really tight round my waist so i asked to get weighed and to my surprise i have put on 3kg which in pounds is 6! woo!! So haaaappy! Going to keep going until im back in my 8's again  :)

Yesterday i woke up to find i wasn't the only one in my bed! I had ants in my pants, literally!!!! They were crawling all over me, so i had to move rooms so they could get the pest people in and do a good old clean up, I got put in this little shoebox of a room and it was so so so hot! i had two fans on full and had my door open, was like a sweat box! But i have my lovely big big room back, still so hot but its much better :)
My tiny room! 

Fingers crossed for still home Tuesday! :)

7,187 Hours on the Transplant list

Thursday, 11 July 2013

Today was a strange day. I had been invited to a day at Papworth to a Transplant Event, they had presentations, talks, drinks, food and music.  It was lovely as i got to meet my twitter friends Stacie and Kath  & Rob who iv met before :)

So today was strange for me because well, during the talks they were having it didn't feel like i should be there if that makes sense. It was like i was there for someone else. I had to keep telling myself this is for me i need to listen, I don't know if im trying to block myself from listening. I always think i know everything about transplant but do i really? I think im to afraid to let myself find out more, to hear all the statistics from the surgeons themselves. I know this is happening to me and i know the basics really about the Op and after care... But i don't know if i want to know any more. I spoke to a nurse when i got back about feeling this way and she just said this is happening to me so i need to know and hear everything i get told. Which is true but i think im just scared. I know what is going to happen when i get the call but iv never let myself actually think about me in ITC after and all the chest drains and needles ect. I keep thinking il just deal with it when it happens and always thought that was a good way of dealing with it, but maybe its not, maybe i should listen and take all the details of it in. 

Today they told us that this year they have only done 2 heart-lung transplants. Two!! I was sitting at a table with two other friends that also like me need a heart and lung transplant, thats 3 of us right there! Its scary...maybe after almost 10 months on the list its all starting to hit me now?? 

Im going to ask to speak to my psychiatrist next week, maybe that will help me at the moment. Iv just got to much going through my mind.

Kath, Me, Stacie & her twin sister Megan today.

Wednesday, 10 July 2013

Keep a weight diary...

So iv been thinking about keeping a weight diary for a week, to see my progress (if any) and you can too.
Il start today with my weight how it is, iv lost alot again :( Il keep track of what im eating and how many calories i have in each day. This will also let people see, hopefully, a little bit of what its like to be in my shoes for a little bit.

Right today my weight is a terrible 40.8kg - Im supposed to be having around 4000 calories a day.
I have some jeans on at the moment that are a size 6 and are far to baggy on me. And my skinny yukky arms. I really hate it, make me want to cry. Iv taken pics so they can hopefully be my before and after pics :)

Eugh they look rank! haha

My weight is a big part of my life so this is a big thing that im letting you in on :) Hopefully this time next week il be a little porker :P

7,085 hours on the transplant list.

Saturday, 6 July 2013

3 weeks and 1 day.

Well iv done it! Iv been out of hospital 3 weeks and 1 day AND iv been off IVs for 13 days :D woohoo!! I haven't been this long without IVs in over a year! :D im so happy :)

Iv been doing well while iv been at home, doing everything im supposed to be doing, walking, not much but as much as i can without a wheelchair. Walking up and down the stairs too, i see that as my exercise walking up and down them a few time a day. Although the other day without even thinkijng of my chest, i RAN up the stairs!! I got to the top and was like 'what did i do that for!!' My chest hasnt seemed to tell my legs i can run anymore lol opsie!

I was also on the ITV anglia news last week for CF week, help raising awareness and get more people to sign up to be an Organ donor :) i think i done quite well and had some people message me telling me that they have now signed up! So i see that as a job well done! Heres a link to the online interview if you missed it

Last night while i was sleeping my oxygen came off from the middle of the line, so i didnt notice until i woke up that i was asleep without it. So i woke with a banging head ache, and very breathless. I came down staires done all my meds then went back to bed for a little bit WITH my oxygen on this time, im now feeling a little better, so iv told myself to get up and get ready go and sit in the lovely weather and then watch the tennis! :) I have Clinic Monday and i will ask to go on IVs , hopefully i can do them at home!

Its also Transplant Week next week, so be sure to help me in getting people to sign up to be a Donor! You can order these tops

from here for free as long as you post a pic of yourself wearing it!! :D 

On Tuesday iv been invited to a little transplant event at papworth, i will be going and meeting up with some friends i have made via online, cant wait to see them :) Kath & Rob and also Stacie!! :D see you sooon!! 

6,989 Hours on the transplant list