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

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

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 

'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.

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

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.