Tom Hardy eat your heart out

Well its now day 14 and no sign of going home yet. Waaaa!
a few months ago if you can remember a blog post i wrote about me getting headaches when i wake up? Well its being happening alot more often now, i had one almost everyday since being in Pap. Its the worst pain, it hurts all around my head, I cant move my neck and feel very sick so i cant move. It isn't nice waking up to this..I actually dread going got sleep now. So i told my doctors this and they want me to try something called the 'Nippy' .. now im still not 100% on how it works, but this is what they said to me today;

• It will get rid of my headaches
• Will improve my breathing in the day time
• Some people have gone on for 5+ years from the benefit of it
• It will keep me stable

So these are good points about it, i am happy to try it out now..When they mentioned it to me before i said no, only because it means another thing, another bit of equipment, another thing to add to my list. But its for the good, i just have to concentrate on Transplant and do anything to help me stay on the list and remember i have to keep fit and ready for when the call comes. As they want me to try out this Nippy iv got to stay here until im comfortable to go home with it, they cant try it out on me until tomorrow evening, and then a few days after that to get me used to it. So hopefully next week i will be home! I miss my bedroom, my brothers and sister...well all my family! lol Hoping the doctors will let me go home for the day Saturday :) 

So i wrote this yesterday but couldn't post it as i had no internet signal.. Today i have tried the Nippy! Its so easy, nothing like i imagined, although i do look a little like Tom Hardy in Batman haha, but of course i look better! They want me to have a nap now and try it out...getting me to nap, well if i have to i suppose i will :P hehe xx

9,719 hours

404 days 

on the transplant list 

Silly me

Okay so now im thinking maybe i panicked alot Tuesday night when i called an ambulance. I did need to call them out as i was starting to have a panic attack and i didn't have any oxygen, but that was my fault. I should of worked out how much i needed and brought more with me, that was silly of me so iv learned from my mistake. I now can not go without oxygen, im having it 24/7.. yesterday I had an xray and just walking from my bed to the wheelchair made me breathless and that was only a few steps away.

The X-Ray came back saying that there was no change! woo! I am so pleased!! Also my infection levels came back and there 13!! wowzers, AND i managed to do a 15 minute walk this afternoon, and a work out on my legs..feeling pretty pleased with myself as my oxygen levels only dropped to 84% while walking, when on Tuesday they were at that while sitting, my oxygen while sitting now is at 94%! yay! Im on 3lts of oxygen while sitting but they said hopefully if i improve we can see about changing it down.

So iv had my IVs changed, i think il be in here for a week or so, in the mean time im going to do swalking a couple of times a day and my leg workout and next week they are getting me some little weights for my arm workouts :)


9,434 hours
393 days
on the transplant list

Ambulance call & Back in Papworth.

So as some of you may have already read on my Facebook, i had to call an ambulance on Tuesday night.I was round my dads with my brother, my dad was at work and was coming home around 9oclock. About 7 i ran out of oxygen so for 2and a bit hours i was out of oxygen..i had a very bad headache in that time, and pain down the back of my neck. My dad came home, we had a cuddle then i stood to get up to go home and then i couldn't breathe and my heart felt like it was going to explode out of my chest. I started to panic that i was going to have a panic attack and i had no oxygen to help me... so i told my dad to ring for an ambulance, the first response man came out and he got to me in seconds! Was so fast and a really nice man (even if he did tell my dad to turn the football off hehe) He checked my oxygen levels and they were 77% he put me on my normal 2lts of oxygen and checked all the normal things like blood pressure, my sugar levels and temp..they were all good. after about 15 mins my o2 levels started to come back up, the highest they got to was 85%. The ambulance man took me home, and i was just worrying all night. I put my oxygen to 3lts and went to bed, but i was up all night worrying, crying, i was just to scared to go to sleep. after about 2 hours my o2 levels got up to 90%..this worried me still because normally i am at 90% on 2lts so it was taking a whole other litre of oxygen to get them steady. I have been very breathless since coming home Friday, i keep blaming ti on the weather but maybe i have a (sorry for the grossness) mucus plug on my chest, so hopefully my xray later will just show that..praying its nothing more! I had some physio last night and it did hepl so hopefully just more of that will help and get me back to normal. I hate being breathless, its hard for me to even walk to my bathroom from my bedroom, and it isn't far.

So im back in Papworth.. got here last night, im going to see if they have anything to help with my anxiety, i feel like thats getting worse.

Hope my call comes asap now!!

9,402 hours
391 days
On the transplant list

Transplant seems to be in the air!

Its been a crazy week on the Transplant front- first Kath get hers (shes doing well, now out of ICU) then i get told that I almost had lungs and then yesterday my friend Stacie had a false alarm!! Heres her blog ... Its so strange that all 3 of us are waiting for both heart and lungs & all three of had a call last week. Crazy! Stacie has been waiting 17 months and Kath waited two years, im now in my 13th month of waiting...So we have done our time i reckon lol

Good news is my weight is still going up! i was 39kgs when i came in last week and now im 44.5kgs (the point 5 matters lol) that's 13lb in one week! .... i have been eating like crazy, doing my feeds through my PEG none stop every night.. i feel so much better for it, and my jeans fit properly again! about 2 weeks ago they were so baggy on me, i didn't even want to get dressed so i just lived in pjs for a while, but now i feel great :)

I saw my doctor yesterday and she said my weight gain is 'spectacular' and all my blood work looks really good! YAY! I'm allowed to be set free on Friday, cant wait as i have plans to see my besties on Saturday night :)  She did say that she wants me to use my oxygen more in the day, as when im off it my oxygen levels drop to around 83%, and she wants it to be over 90%. She explained that if just lungs became available but my heart was to weak because of the strain i am putting on it while being off o2 they would say i couldnt have them, so to be the best for all (lungs and heart and lungs) it would be best to just wear it more. (i hope all that made sence lol)

So plan is home Friday, ON ivs but i don't mind..and clinic in 9 days which gives me a lovely break to be at home :)


9,232 hours
384 days
on the transplant list

So close!!

So i just had a chat with one of my transplant co-ordinators, and its made me feel SO much better! On Friday i wanted to see someone to ask why im waiting for heart and lung when alot of people i know who have had there transplant were just double lung & if waiting for lung would mean i get them quicker. So i spoke to him this morning and he said im waiting for heart and lung because im so tiny, as soon as he said that i remembered the convo we had about this just over a year ago, so as im so tiny the op would be better for my recovery if i have both but then he said as my heart if healthy and nothing wrong with it, if just lungs came available and were good to go i would have them :) so this made me feel better.

THEN he went on to tell me that last Wednesday around 3am a set of heart and lungs became available for me, but as i was already in hospital they didn't want to get me up and rush about until they knew if i was going to have them, unfortunately during there tests they said they weren't good enough. But this has made me feel loads better knowing this!! Iv now been on the list 13 months and just hearing that i almost had a match is good enough for me as i was starting to feel like maybe they had forgot about me! lol They said they were talking about me last week in the early hours when they found out about those lungs so its nice to know im not forgotten :)

Im still in pappy and iv put on a lovely 6lb in a week :) my jeans fit me again! Woo! i think il be in for one more week if all goes well :) im off home for the afternoon today as its my dads birthday, so cant wait to see everyone!

9,161 hours
381 days
on the transplant list

Good Morning!

Good morning everyone!

First thing is about my fiend Kath ( on the left) Had her heart and Lung transplant on Monday!! After just over two years of waiting!! yay!! She has an incredible blog if you wanted to read something different from mine! Shes so lovely and writes so so well. Click here for here blog :) She is still sedated at the moment but i think he husband Rob said they are waking her today! Cant wait to hear from here & hopefully see her as im staying here at papworth at the mo!

So me, im still waiting for mine! haven't had any calls still, but after hearing about Kath I am hopeful. It will come soon!

As i said i am in hospital, but im not feeling to bad! My infection level was only 71! that's really not to bad for me, considering id been off IVs for 2 weeks. BUT i have lost a heck of a lot of weight, in the last 6 months iv lost a stone :( I look and feel awful! But while im in here im going to sort that out! I'm not leaving here without some chub on me!!

My oxygen levels have dropped a little again, they now sit around 80-83%.. (good sats are between 95-100%) so they are quite low and i need to be having some oxygen while just sitting here now, which i hate as I don't feel breathless at all.

Its now coming into winter time!! I love the Christmas time so im so excited already, the only part i hate is how everyone is ill! This time of year gets harder for me to see people as they all have colds ect which i cant be around, i have the flu jab booked for when i get home ( i will get a little cold from that) but im hoping that's the only cold i get this winter! Iv just brought a new lovely coat ready, got a new beanie hat and now just need scarf and gloves and il be set! :D

thank you for reading this small update, will update you all on Kath as much as i can :)

9,065 hours
377 days
on the transplant list