2weeks home!

Two weeks iv been home now, and iv had a cold most of the time. yukky!

The day after i came home i was feeling very short of breath and just put it down to me moving around more and walking, but i continued  to feel the same on the Monday and Tuesday. I spoke to one of my CF friends and she was feeling the same, so we thought we could both be feeling like this because of the cold weather. I have to remember my lungfuction has never been this low in this weather before so im going to feel a difference. So i rang Pappy to bring my clinic forward to this week, but i didnt go as i am a scaredy cat about driving in the dark lol so my dad is driving me next week :)

Iv had a cold all this week, coughing and sneezing. iv now lost my voice too :( But im not staying in bed im still up and about doing things :) i like to keep busy!

Iv now been on the Transplant list 10 weeks, gone so very fast! Im still jumping to my phone every time it rings lol don't think il every get used to it.. One of my friends friends had his lung transplant yesterday after waiting a very long time! so hope he has a fast recovery :)

Thats all for now :) xx


1,734 hours on the list

Need your Prays...

One of my friends is having a hard time at the moment.. Shes on the Transplant list and has been for nearly 6 months now. This is a post from her fiancé -

Hi guys it's Josh updating here on behalf of Kerry: 
We have had the GP come to visit Kerry today as she took a bit of a bad turn through the night and he has confirmed she has pneumonia which explains all her symptoms and he is helping her to get a bi-pap machine which should allow her to have a break from the exhausting task of breathing and it could have a good impact on her quality of life.
We

 also have the hospice consultant coming to visit tomorrow to see about making her more comfortable because right now she is struggling a lot.
I know for a fact she is overwhelmed by all your messages after seeing the smile on her face every time I read her the kind, supportive comments from you guys, it really does brighten her up and keeps her positive head on, so thank you for that.
One thing for sure, as you all know, Kerry is a fighter (she doesn't know I've added this to the comment) but I'm so proud to call her my fiancé and even with everything she puts up with, she never ceases to amaze me with her positive attitude. And I want her to know that the puppies and I are so proud of how far she's come and the progress she's made despite the obstacles she's faced particularly this year (multiple lung collapses etc) and as two years ago we were told she wouldn't even be here right now so the fact she is still with us and her weight certainly wouldn't be where it is today, just goes to show she really is determined to get her new lungs (or stubborn depending on how you look at it lol!)
With this positive spirit, the amazing support and the love from her family and friends, I know she WILL get through this.

Please keep her in your thoughts and prays. 

Christmas & Hospital!

Iv been getting alot of different feeling lately. I was doing a bit of Christmas shopping this week and it hit me that i could get my lungs before Christmas, then i thought what if the op didnt go to plan and that was it? So i want to make this Christmas very special! Iv nearly done all my Crimbo shopping!! Its so organised for me haha...

 Im going to take my little brothers to scottsdales soon, i cant wait!! Going to take one of my youngest brothers to see Father Christmas :)  Being there gets me so excited for Christmas, Im in charge of decorating the house this year!! YAY! hehe

So hospital news .. Im still in hospital day 7, my infection levels have gone from 45 to 19 so on the right track :) Iv been extremely bored this time round but feeling good! Chest feel clearer, hope my lungfuction is higher than 20% this time... well even if it stays the same il be happy :)

iv now been on the Transplant list 8 weeks!! Gone so fast!

1,370 Hours on the list

Nearly 3 weeks!

Oh my gosh! its been nearly 3 weeks since i finished my IVs!! Yaaay :) Haven't gone that long without going into hospital in ages.. since June time i think, wow! So iv been enjoying my time at home, relaxing and trying to keep busy. I had my Button changed to a bigger size last week, i had a nurse come out to do it for me and she blooming hurt!!

i had to lay flat and she took out my old button easy, it felt very strange though, then she got the new button but it wouldn't go in...she tried for a while to get it in. It was so sore and very painful. I nearly ended up biting my nans hand lol. So it wouldn't go in, so she got some olive oil to put around it to help. She finally got it in. 'we have to be cruel to be kind' she said. Wasn't her blooming belly going through all this though! lol.

I also went shopping in a wheel chair for the first time last week. I had been dreading this for ages, but i done it and it really wasn't bad, although it was in a place where i didnt know anyone. Think id feel different if it was in town. But i done it and im proud lol

So iv got clinic on Monday and iv got IVs planned on the 12th for two weeks. Il update after then!

Thank you for reading again :)

1,082 Hours on the Transplant list