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