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.

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.

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
http://www.itv.com/news/anglia/update/2013-06-27/cystic-fibrosis-sufferer-calls-for-more-donors/?action_object_map=%5B521188267930309%5D&action_ref_map=%5B%5D&action_type_map=%5B%22og.recommends%22%5D&fb_action_ids=10151431337261601&fb_action_types=og.recommends&fb_source=other_multiline


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 

http://www.iliveigive.org/

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 

Rude people!

Iv been out of hospital 9 days... and still feeling good! Chest has been very good this week and well behaved :) This new physio machine is the best bit of physio iv had in ages! its helped loads :)

This week iv had a comment about me walking, and someone has said they think i put on how far i cant walk and i lie about it. I was not very happy about this as you can imagine. I want to clear things up for those people out there that think that i do lie about the distance i can walk.... When im well i can walk, but i still get out of breath and need to take a break. After a few years of doing this i have taught myself how to get my breath back without looking like i am... so it may look like im fine but i am not trust me. I just think its so rude of this person to say this to me.

Any way i am fine and can walk small amounts...i do use a wheel chair cos i don't want to over work myself and me end up feeling rough for days after.

Been on the transplants list 6,673 hours.

Im hoooome :)

I came home Friday! Yaaaay!! My infection level was 12 so i was good to go, im home on IVs and will be on them now until my transplant comes. But im only on 2, 3 times a day and it doesn't take that long.. I also have a new toy! Its helps with my physio, shoots air in my lungs to help clear out all the yukky stuff. It works really well and is helping me quite alot .. Called a Breas or some people call it a bird.

iv been home 3 days and im still feeling really good, lots of energy, not having much breathless either! So so far im doing well than last time when i was home lol

I have clinic in a week hopefully i can keep going like this until then :)

Only a tiny update :)


6,533 hours, 8 months 30 days on the Transplant List.

I wanna come home!

Iv now been in hospital 2 weeks, its been sooooo boring !! Doctors have said there happy with me, i have good air entry all over which is good to hear! They said i can go home tomorrow if my bloods come back good today.... So fingers crossed for me!

Im looking forward to going home, missed my nan and gramps so much...and now my mum is living at home with us for a little while as she has broken her ankle badly and as we have the stair lift at home its easier for her to go up and now on that. So cant wait to spend some time with mum too :) 

Not much to report on Chest wise...Il be going home on IVs as they don't want me to come off them now, which i agree is a good idea, this way i can be home longer than 4 days without coming back in. Hopefully!

Il let you know how my bloods are and if im coming home tomorrow! 

6,433 Hours on the Transplant list

Back in again!

As you may know im back in Papworth, Boooo!! I went home on the 25th, and by the 29th i had to ring to ask to come back in :( I was feeling terrible, i couldnt even move without having a full blown coughing fit, i was actually quite scared. I had to keep distracting myself with the telly. I only had my younger brother with me, he was amazing and looked after me the whole time i was home, my mum was in hospital as she broke her ankle and my nan and gramps were away at their caravan, So it was just me and my brother almost all week. I had a panic attack in the week while i was at hoe, not sure what brought it on but it lasted almost a whole hour, it was very scary but again my Brother Ethan was there for me and helped me so much.

So i rang the hospital on Wednesday evening on the off chance that i would speak to a on call doctor as it was late i thought my drs would be at home but my main dr answered the phone to me, so i told how i was feeling and he asked me to come in the next day. Which i did, on the way i stopped off at my mums hospital so see her then my step dad and brother took me to pappy. My infection level was only 54... i say only cos i expected it to be way ver 100 from the way i was feeling! But after only 5 days im feeling so much better! Its either the IVs or (i think) the fact i have only been drinking orange juice (lots of vit C) hehe.

My infection level has gone down a little, and iv put on 4lb over the weekend :) I think il be in for the full 2 weeks. have a good rest and top up! Im aloud out for the day Saturday for my little brother Liam and my sister Rheannons joint birthday BBQ party :)

6,220 hours on the Transplant list