Monday, 26 August 2013

I have energy!!

I strangely have alot of energy this afternoon! Woo! Finally, I like having energy but being stuck in hospital i cant use it! So im just wondering around my room lol like a loony person! So what has happened since my last blog on Saturday?!

Not much really, my room i was in was so so hot, i couldn't handle it, then my shower broke and then a nurse came in my room asking if i had been smoking!!! Couldn't believe it, i had a man in my room earlier fixing my shower, it could of been him that she smelt, or the fact that im on a second floor and people outside smoking, the small of it could come up from there. Grr so anyway after i polity told her it wasn't me, even though 'shes an ex-smoker and has a really good sense of smell' i think she felt guilty and had me moved into a better room. This room is so much cooler and quieter so im sleeping alot better now, the bags under my eyes are slowly going! lol.

I saw my doctor today and she says she wants me to stay in for the 2 weeks, to have a proper rest and she wants to see my weight increase. So if i get my call the transplant team are happy with it and wont worry that im to skinny for the op. But i did say if im in for the 2 weeks i would like to go home at weekends, which im aloud to do, so my dad is helping me sort out how to get my car up here :) Need to get home for my hair and nail appointment don't i !! lol

Other than an x-ray and a few blood test i have nothing hospital wise to report back on :) Iv been on Netflix alot this weekend, and iv just come across Breaking Bad, i love it! Haven't stopped watching it lol I need some Breaking Bad buddy's to discuss it with though!

8,217 hours
342 days
On the list

Saturday, 24 August 2013

Donnas Dream

This is just a quick post to say i want you all to check out a blog for me please!

Its called Donnas Dream, reading it has already made me cry this morning, but i don't send you this intending on making you cry. Its a very good blog, has lots of different peoples transplant story's and journeys. They have also asked for me to write for them, which im more than happy to do so and am in the middle of writing it now, i just want to get it right for going on such an important website.

Thank you for taking the time to read it! You are good people :)


Friday, 23 August 2013

My week..

Do i moan alot? It seems like all i do is moan and complain about things! Well no more...after this post haha

SO i had clinic Monday, and i had a new doc, it annoys me when i get new doctors cos they don't know me! She asked if i had any allergies...hmm only a few haha so i had to name them all, theres about 7-8. I know its a silly thing to moan about but my doctor knows that already. Anyway iv had a bad belly this last week and a half, i thought it could have been because iv been on IVs for 6 weeks now, so we agreed to come off the IVs, and for me to come back in a week. WELL.... they rang me on Tuesday at 4.30 telling me my potassium was low and i need to take some tablets for it, i went to see if i had any, which i didnt so rang them back telling them that. They then said. 'well its to late to get them now pharmacy is shut' ?!? So why did they wait until half 4 to tell me! They wanted me to start the tablets that night too, so she went off to ask around the hospital wards if anyone had any, she rang back and said she had found some and there ready to be picked up asap! So me my dad and my sister went up there, we got there at 6 and had to wait for the on call doctor to sign for these tablets....and hours and a half later!!! one of my doctors walked passed and I asked him to sign for them which he did. Very nice of him. They wanted me to come back Thursday for bloods to check the levels then. They also said my infection level was 46! So it had gone up from 21.

On Wednesday me my Dad, step mum Allie, sister Rheannon and brothers Ethan, Charlie and Liam we all went to London, was such a fun day, but London is definitely not made for wheelchairs!! So many stairs!! My dad had to carry me up them!! But we went to the sea-life centre and we all had a good day out :)

On Thursday me and Ethan went to get my bloods taken, had to be there at 12, so we got there, i had my bloods taken and i asked to speak to a doctor as i wasn't feeling great. All week iv just been feeling so exhausted, im so tired all the time, have no energy to do anything. I had to wait an hour or two for my bloods to come back, and to my surprise my infection levels had gone down to 15!! So In myself im just very tired, chest wise im okay (touch wood).They said they will get me in to have some IVs, they said it should only be a day to wait. I had to call my Dad and step mum to come and pick me and Ethan up from pappy as i just couldnt drive, i had been coughing to much and was worrying to much about the drive home, so big thank you to dad and allie for that :) Last night was probs the worst night iv ever had, i just didn't sleep! I was awake all night, it got to about 4 this morning and i finally gave up trying to sleep and went down stairs to watch telly, caught up on glee! Papworth rang me this morning and they said for me to get in at 4 today which i did! im here!!

Iv already done my Tesco shop, that will be with me tomorrow :) So the plan is, hard core physio! more IVs, and start up my feeds again hoping that my belly gets better!

8,146 hours
339 days
on the list

Friday, 16 August 2013

Fancy new blog!

Hello everyone!

As you may notice i have a shiny new design on my blog..if your on your ipad, computer you will be able to see it better :) A lovely lady designed it for me, i love it!

On Wednesday afternoon my phone starting ringing showing up as 'unknown' so of course my first thought is transplant, i answered the phone and they said 'Hi im from papworth' i got all butterflys in my stomach thinking they was going to say they had lungs for me, but they went on to tell me that ITN had been in contact with them and wanted to do a follow up interview on me as it had been 6 months since the last time i saw them... of course i said yes! I loved doing it last time and would love to do it again, they said id have to go to Papworth on Thursday for the interview. So Thursday came and me and my sister Rheannon drove up to pappy, they wanted to do the interview outside as it was a lovely sunny day. Got my wheelchair out and Rheannon pushed me to go meet them, they were all so nice it was lovely to see them again. We done the pre recorded bit for the 6:30 news, then Lawrence ( the nice man who was interviewing me) asked if i would do a short interview live at lunch time, which i was more than happy to do :) I wasn't even nervous, i loved every minute of it! I did cough will it was live, i tried to hold it in but i just couldn't..but in a way im glad i did cough, it got people to see the real side of CF.  Since it all being aired yesterday iv had ALOT of messages from people i don't even know, its so lovely that they have taken time out of their day to write to me, someone even from Austria! Crazy! so thank you all, and thank everyone else for your continued support! :)

Now this has happened a few times, people keep asking me when my transplant is happening and if iv heard anything from them. How it works is im on the list, i wont hear anything from them until its my actual call. I don't know nor does the hospital when il get my call, it could be any day, month, year..any time of day! So im afraid that's how it works, but as soon as i know you will know trust me :)

In myself im doing okay, still on IVs..iv not been feeling great today though had a bad belly so been in bed all day, but im making myself get up and about tomorrow :)

Also if you do have an iLIVEiGIVE top please take a picture of yourself wearing it so i can put you on my fancy new blog! :)

Been on the transplant list -
7,981 hours
332 days

Tuesday, 13 August 2013

6th week.

Hello all!

Iv been home on IVs a week now, had a nice few days away at my nans and gramps caravan, which was lovely. But now im home and back to the old routine, and my nan and gramps are still away so i have my sweet brother helping me out at home this week. I had clinic yesterday, i was hoping to come off my IVs for a little while as iv been on them 5 weeks now, but no as i had alot of crackles yesterday (all on my right side) they want to keep me on them. So im now on my 6th week! 2 IVs 3 times a day, which isn't so bad really, last week it was 4 times a day and they were all drips that took half hour to go through, so i cant really complain.

Last night i had quite alot of pain in the bottom of my back, it hurt to walk and it was making my limp! Even laying in bed it hurt, i couldn't turn over without shooting pain. I had to ask my mum and brother if it could be possible that i could of broke a bone there, i don't know how i could of but because i have weak bones its a possibility! But luckily today the pain isn't too bad. So phew!

If your on my Facebook you will of seen post about an online friend, you also may of heard of her as shes been on the telly alot- Kirstie Tancock, two years ago she had a lung transplant but a few months ago she got chronic rejection and was told she had weeks to live, she also got told she couldn't be re-listed for another transplant, BUT a miracle happened and within hours of being told this she got a set of lungs, she had her second transplant Saturday and has been up walking a little already, if you want to read her blog and updates from her husband click here.

Nothing else to report other than feeling a little down lately, my mood has changed and im just not feeling great in myself, not up for doing anything. Just feeling very sad. But im sure in a few days il be back to my normal self :)

7,905 hours on the list

Tuesday, 6 August 2013

I need a rant..

Im going home! :D Yaaaay!

Iv done a week in here, which feels more like 3. This hospital stay has been the most slowest, boring, annoying stay iv had in quite a while, as iv been on a different ward to what im normally on. The nurses on this ward just don't know me, and they don't seem to like to have a joke or laugh lol Im so glad today is my last day, heres  my little rant - The nurses here have done my head in this morning. They woke me up to take bloods (they took bloods yesterday but some how forgot these 3 bottles) So they put on the big light woke me up and took my blood, i had a head ache, and they took my blood pressure which was low (because i had just woke up) so they started panicking! 'your meant to be going home today but your ill' I kept telling them im not ill i just have a head ache. Then because i hadnt been for a wee in the time i woke up to have my blood pressure taken obviously something was wrong with my bladder! haha ridiculous! So then they got my dr to see me as im 'ill' but we just laughed, thankfully someone around here still knows how to do that. So yes im so so glad im going home! Got some lovely plans too! :)

7,731 Hours on the list

Friday, 2 August 2013

Blog from Pappy!

Hello from Pappy!

I had clinic Monday and the plan was to come off IVs but as my bloods last week said my infection level was 88 they wanted to do some more bloods just to see how it was. They took my port needle out and i went home, planned my whole week out, had lots of lovely little plans then planned to go away at the weekend with my nan and gramps and brother Ethan to the caravan. But Tuesday morning hospital rang and said my infection level was 104!! So they had a room ready for me and wanted me in asap. So i packed and my dad brought me in. My infection level now is 84 so its on its way down. They said my x-ray was fine and no change so thats good, and they want to keep me in over the weekend and see how i am Monday. 

Today was my Transplant review as iv now been on the list 10months and 15 days! They were happy with me, didnt say much other than they are surprised i haven't had any calls yet! They said my height and blood type are statistically the best to match. So whats the hold up hay? haha. I said could it be my anti-bodies as there 50%. But the consultant said that means out of 4 donors 2 would be a match for me, so thats still good. So i just gotta sit and wait and hope my call comes soon :) keeping everything crossed! Coming up to a year on the list its gone so quickly and so much has changed in that year, that will be a good blog lol

7,638 hours on the list