I got my transplant!!!

This is my second attempt to write this blog, i deleted the last one by mistake!! lol Sooooooo.......

                                                I HAD MY TRANSPLANT!!!


Yay!! :D I had it 23 days ago now, so here is what happened -

I was already in papworth on day 10 on IVs as i normally do every 2 weeks, then on the 4th December at 3.30am a transplant nurse came in to wake me up, i was having such a good sleep lol then i heard ' Bernice, im from transplant, we may have lungs for you' straight away i was wide awake, i was shaking so bad, i couldnt even talk properly lol i rang everyone, text everyone then told facebook ect lol about an hour later all my family were with me, my mum dad step dad step mum gramps aunty brother and sister! lol the room was packed! I had ITV come in to interview me, and when they said the op was a go. I said my goodbyes to everyone, then me and my mum went down to theatre.. i was very nervous seeing all the surgeons getting ready.. i had to lay down on a table while they connected me to everything then they put a needle in me and started to give me the drug that puts me to sleep, i dont remember this but my mum said when i started to go to sleep i started to dance and said i want to party haha.

Next thing i know is im waking up with a tube in my throat, i couldn't talk.. and was very scared about having that tube in me, i had always got told i wouldn't remember it! It was horrible having it taken out, i needed to cough, i was gagging..just the worst! but as soon as it was out i could talk :) Then i was in ICU for 2-3 days, i didnt sleep at all those nights, i was really in agony... and there was so much noise! So over the next few days i got moved over to the normal ward - Mallard Ward. Before i went over i had to have two of my chest drains taken out.. i had gas and air.. it was awesome! haha it made me dance! i thought i was dancing to 'cazy in love' haha!! So i had 2 chest drains taken out and two more left in, i had my wrist needles taken out to, so i just had my neck line left in.

Here is a few pictures from the last 3 weeks, sorry there is only a few!

                                                me and Kath who had her transplant in september

                                                       me and my sister christmas day

                                                    me ethan and rheannon on christmas day!

                                                      my little blue book full of new meds

                                                    my new lungfuction kit, i have do everyday

                                                first time walking with my little brother

                                                        today with my own rosie cheeks

                                                                  All my tablets!!

I was aloud home christmas day! But they hospital didnt pack me any anti sickness so i was feeling sick and being sick most of the 3 days..so on boxing day i had to go back to the hospital quite early :( but once i started having the anti sickness i felt so much better! and still feel better now. I do have an infection at the moment, so thats why im still in here, im on IVs still too. But they said all my bloods are looking good and my bronc from last week looks better from the weeks before..so hopefully its going in the right direction :)

I will write more soon, there is just so much and seeing as its been 25 days and i hadnt updated you i thought id do a mini one :)

I would also like to say a massive thank you to everyone who has taken time out of there day to write to me, either if its via facebook, twitter or a card or letter though post, and the gifts too..it really has been so overwhelming to see how many people actually care about me getting my transplant! :) So thank you all so so much!!

I got my transplant on day 446 of waiting :)

Catch up..

Sorry i haven't posted in a while because i didn't want to post for no reason and you all get bored of me haha So thankfully, not much has happened since my last blog. If i remember my last post was about me starting the Nippy, it is going great! I haven't woke up with a head ache since! :D woo! In the week i went out for a bit and i didn't walk much but it was up a little hill and i got quite a bad head ache after that, so when i got in i put the nippy on and after about 20 mins the head ache went away! its great! :)

Iv now been home 15 days, on IVs but im pleased with that..around this time of year i would rather be on IVs, to many people are ill..i have to avoid everyone who has germs!! This time of year can get very lonely :( My nans not very well at the moment either so as i live with her its hard to not be in contact. We have lots of germ gel though lol

I got a fine today for parking in town, i had my blue badge out and i walked up to the policeman writing the ticket out, he could see me struggling walking to him and i was wearing my oxygen. I explained that there wasn't any parking spots in town and i couldn't walk far so that's why i parked where i did. He just said 'this isn't my favourite part of my job.' Very rude of him i thought. I'm going to appeal though.

I have clinic tomorrow! Hopefully they will still be happy with me being home :) IV still got some tablets to fall back on if i start to feel crappy :)


10,154 hours
423 days
on the transplant list

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

Im sad.

So lately iv been feeling very low and im finding it hard to snap out of. I see friends or people i went to school with moving on with there lives, getting houses, getting engaged, having baby's and getting really good jobs. Don't get me wrong im so happy for them all. But its making me feel really sad that all im doing with my life is watching repeats of the Big Bang Theory all day lol. This week iv been feeling crap, feeling so sick. Not eating much and this has brought family to tell me i look like a skeleton and im 'killing myself'. This has upset me deeply, i know they care about me and they say stuff like that to make me eat, but they really don't understand that when i feel this sick i really cant eat. Its not like im doing it on purpose. Of course i want to eat, when im hungry i love my food. Its so hard for me to always be hungry. All these antibiotics im on make me feel terrible (while trying to make me feel better) lol. Grrr. I was meant to go out today but now my confidence has been shot down, i really don't want to leave my house. I have been crying all morning. Think i should just go back to bed until tomorrow lol

This was just a 'get it of my chest blog' nothing really to report on my chest. Im still off IVs (day 10) but do feel like i need them now. I would ring my hospital Monday but i was told they are to busy to see me if i feel ill in the week so i have to wait until next Monday.

8,902 hours
370 days
On the transplant list

One Year later.

Well today is officially a whole year since being put on the Transplant list. When i think back to how i was last year compared to now im not sure how much has changed. Within my life outside of CF it has changed alot, im no longer with Ben any more. I have a now have a beautiful godson, and iv lost a close friend to Cf.

There has obviously been alot more things that have happened in the year but them 3 are the 3 main things that stand out to me. It was a sad time for me when me and Ben broke up. But we still talk and it was for the best. My cousin has made me Godmother to his beautiful little boy, i am so so touched that they asked me, it means the world to me :) And then my friend Clare passed away, that was really tough for me. We used to talk almost everyday, we were always in hospital together but because of different bugs we had we could never meet up. So we planned to meet up once we both had our transplants, we said we would shop and shop  and eat loads of sushi! I brought a lovely rose bush for my garden in memory of her, its beautiful just as she was.

In my CF self, i have changed as i need oxygen alot more, and i use my wheelchair alot more now too. I don't do my lungfuction any more as im scared of what it will be. But last time i done it it was 22% and that was on last December. But now they just go by what my infection level is to see how i am. I am on more IVs, i have only just come off IVs and i was on them 10 weeks. So i am getting more infections.

But really if i had to look at picture of me from last year to now i dont look any different! mabe i was a little chubbier, but i will always struggle with my weight. Its like a yo-yo! Does my head in, why cant there be a fat transplant! haha.

So as i said earlier i am now off ivs, woo! Its nice to have a break, although i am pretty breathless atm, and because im so stubbon i dont like using oxygen 24/7. But i checked my oxygen level today and it was 79% (above 95% is where it should be) So iv given in and put my oxygen on.

Iv got clinic on Monday and think il be back on IVs but im okay with that, iv had a nice week off. With alot of back pain though! Couldn't walk or sit up straight it hurt that bad, but my wonderful mumma came and rubbed my back and also my Nan (even in her bad condition) rubs my back as well.

I have a fancy dress party tomorrow and im living out my dream of becoming a real Princess!! Im going as Belle from beauty and the beast :D So im looking forward to that, as im off IVs i may have a sneaky drink as well :P hehe.

Thank you for all your lovely messages, you all cheer me up. Oh also the iLiveiGive tops are going to start charging now, which i think is a great idea as it will raise alot of money!

thanks for reading everyone!

8,761 hours
365 days
on the Transplant list

Headaches & no sleep..

For the past five days now iv had a constant headache. It feels like a balloon is inside my head, full of tension, hurts to move, hurts to watch telly, and even eating it hurts. So im well and truly fed up lol its no fun, when i cant watch tell or read to pass the time, im very bored, i try to sleep but the nurse dont like me sleeping! They always wake me up and tell me the time, they are obsessed with letting me know what the time is! 'Bernice its 4 o clock, should you be sleeping' Yes!!! Im in hospital! what do they want me to do go for a run?!?! haha me moaning again!

So anyway if my bloods come back lower than 53 tomorrow i can go home Friday! YAY! Cant wait to finally sleep in my own bed! iv not been sleeping well here at all, i get to 3am before im finally drifting off then they wake me at 6 for IVs, then at 7 for blood pressure and sats then at 8 to see if i want a drink or to make my bed! They actually woke me up the other morning to make my bed! lol Safe to say i do not like it here on Princess ward.

My weights gone up a little, 4lbs in two weeks isnt to bad :)

Hopefully next blog will be from home!! woo!

8,432 hours
351 days
on the transplant list

Rough few days

SO as you may have seen on Thursday i was a bit unwell, i had woke up that morning feeling quite chesty. I was coughing alot but nothing was moving on my chest which made me feel worse, i just felt so clogged up, like i was drowning. Even phsyio didn't help. Around 3ish i had a little snooze and when i woke up about an hour later i had a big cough, finally it moved and came up (gross sorry lol) But it wasn't my normally yucky stuff, it was blood. Panic mood set off and i was ringing my buzzer for a nurse, she came and i explained what happened,& she got a dr to see me. I was surprised as my doc took a look and said 'oh well that's not much' she put me on a drip to help thicken the blood the stop me from coughing it up. She said this could of happened because my lungs were inflamed due to infection, and where my lungs were pressing against my ribs it burst a blood vessel. So as they were inflamed she wanted to change my IVs around, my infection level only came back as 39 which to be honest wasn't bad, i was expecting, and so was she, it to be well over 100! So that was good, my dad, step mum, brother and sister came to see me that night as i was a little worried. On the Friday i felt so so rough, i normally do after a bleed. My temp was 38.9 but i was so cold! i had 3 blankets on and a hoodie. My oxygen levels were 89% on 2 litres of o2, they are normally 89% without oxygen! so they put me up to 4 litres and i had to be on it all day.

I slept most of the day. Then in the evening i had a bad belly, was horrible pain and feeling so so sick. I saw the doctor again and she said it sounds like a sickness bug, i thought great just what i need. But she stopped my Ivs while i was feeling this way and straight away i felt much better! So they decided it was a certain IV making my belly bad. On the Saturday morning i still felt rough, i was still in bed at half 12 not wanting to move. But i knew if i had a shower i would feel better, i just didn't have to energy to get up. But i knew if  my mum was nagging at me to do it i would, so i text her and actually asked her to nag at me until i was showered and dressed! haha, it worked, i had a shower, washed my skank of a hair, and got dressed. My dad and step mum was coming up to visit and bringing me new clothes, so when they arrived i got dressed and we went over to the pond and green area for a bit, it was nice to get fresh air, i hadn't been out my room in over a week! We played bat and ball, which i actually played and yes i did manage to hit the ball! lol. We then fed the ducks, well my little brothers did, im scared of ducks lol then we went over the canteen for a drink, was really nice to get out and i felt 100x better for it! And today im off my oxygen, feeling good, back having physio and no signs off blood :) (touch wood!)

Still not sure how long they will want to keep me in, it will be 2 weeks on Thursday so we shall see!

8,358 Hours
348 Days
On the transplant list

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

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 :)

xxx

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

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

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.

3 weeks and 1 day.

Well iv done it! Iv been out of hospital 3 weeks and 1 day AND iv been off IVs for 13 days :D woohoo!! I haven't been this long without IVs in over a year! :D im so happy :)

Iv been doing well while iv been at home, doing everything im supposed to be doing, walking, not much but as much as i can without a wheelchair. Walking up and down the stairs too, i see that as my exercise walking up and down them a few time a day. Although the other day without even thinkijng of my chest, i RAN up the stairs!! I got to the top and was like 'what did i do that for!!' My chest hasnt seemed to tell my legs i can run anymore lol opsie!

I was also on the ITV anglia news last week for CF week, help raising awareness and get more people to sign up to be an Organ donor :) i think i done quite well and had some people message me telling me that they have now signed up! So i see that as a job well done! Heres a link to the online interview if you missed it
http://www.itv.com/news/anglia/update/2013-06-27/cystic-fibrosis-sufferer-calls-for-more-donors/?action_object_map=%5B521188267930309%5D&action_ref_map=%5B%5D&action_type_map=%5B%22og.recommends%22%5D&fb_action_ids=10151431337261601&fb_action_types=og.recommends&fb_source=other_multiline


Last night while i was sleeping my oxygen came off from the middle of the line, so i didnt notice until i woke up that i was asleep without it. So i woke with a banging head ache, and very breathless. I came down staires done all my meds then went back to bed for a little bit WITH my oxygen on this time, im now feeling a little better, so iv told myself to get up and get ready go and sit in the lovely weather and then watch the tennis! :) I have Clinic Monday and i will ask to go on IVs , hopefully i can do them at home!

Its also Transplant Week next week, so be sure to help me in getting people to sign up to be a Donor! You can order these tops

from here for free as long as you post a pic of yourself wearing it!! :D 

http://www.iliveigive.org/

On Tuesday iv been invited to a little transplant event at papworth, i will be going and meeting up with some friends i have made via online, cant wait to see them :) Kath & Rob and also Stacie!! :D see you sooon!! 

6,989 Hours on the transplant list 

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

Nice weekend

Iv had a nice-ish weekend lol I had a lot of my family come see me and my good twitter friends Kath and Rob, iv mentioned before Kath is also waiting for a Lung Transplant...so that was really nice, but then my chest was being silly all weekend. The Saturday I felt quite bad, was coughing a lot and couldn't move without coughing, and was also on my oxygen for most of the day...then on the Sunday my chest was fine! I wasn't coughing much at all. And then last night I was up all night coughing, so its a bit up and down at the moment. I have now been put on IVs and there all ones that can be pushed in so im not on a drip at all, which is nice to be able to move around without a drip stand running over my toes! lol Not much else to write about yet..which is a good thing I think lol

I have now been on the Tranplant list 8 months! Its gone very fast, but seems to be very long as well.. Hopefully not much longer.

5,864 hours on the list.

No Sleep!!

So last time i blogged i had just had my Transplant review, since then i have been on IVs so about 3 weeks now.... Iv been waiting for a bed to come in for ages too. But Papworth have been so busy with so many Cf'ers not being well. Well last night i finally got a call to say they have a bed for me, my potassium has been very low and there quite worried about it and have been monitoring my heart to keep an eye on it. So last night i got hooked up to my drip, had wires all over my body and the machine beeping every other second. So i knew i wasn't going to get much sleep. THEN, 3am i had nurses come in and a dr to tell me my potassium is dropping even more, so they want to put me on an intense drip for an hour and more wires added to my chest, i also had a cannula put in, yes it did hurt alot lol then they kept having to check my bloods so was having blood test every half hour. So no last night i didnt sleep at all....and with all  that i so desperately needed a wee!!! But with all the wires i couldn't move so had to hold it until 9 this morning, was horrible haha. So i just saw my Dr and he wants to give my kidneys a break of IVs so i wont be on any this weekend, have a nice break and try and sleep as much as i can! If anyone wants to send me some Ben and Jerrys ice cream im okay with that :) hehe Oh that reminds me, i mentioned before that i have lost alot of weight, but i have managed to put on 2lb this week by just eating no feeds as they want me to have a break from them too! So yay for 2lb!!

I had a lovely birthday thank you for all your messages :) i will let you know how this weekends goes next week :) thank you for the continued support love you all!!


5,787 hours on the Transplant List

Transplant Clinic

I had my transplant clinic Friday morning, was a little nervous as my weight is down ALOT and thought they might take me off the list until it improves. So my Dad came with me, my appointment was at 11:30 we got there in time, but as i had to walk up hill to the waiting room, i got very very breathless! had to use my oxygen and have a sit down on a bench outside (in the pouring rain!!!) once i was okay i walked to the clinic, and checked in, met my online friends, Kath & Rob, who i started talking too as we were both on ITV news being interviewed. Kath is waiting for her transplant too, but has been waiting much much longer than me (over 500 days). Such a lovely couple, and i hope her call comes soon!!

Me and my dad saw a new consultant, so was nice to meet her she was lovely, but i cant remember her name! lol She seemed happy with me and said that i seem to be handling things well, ie my ivs and not having alot of time off them. This is the first time my dad had been to the transplant clinic so she went through everything with him and answered all of his questions, which i had forgotten some things so i was a little shocked again. The main thing that i didnt like was she told us that the lungs they would be coming from because of my size would be a child. I didnt like the sound of that. I felt so bad. That a child has to die for me to live. I know i shouldnt think of it that way, but i cant help it. She looked at my X-ray and i have some scaring on my top right lung, which she said could be hard to get out. That also scared me a little, but i have faith in all the surgeons there!

Later that day i had my step- sisters wedding to go to, which i was a bit nervous for as i had to drive there in the pouring rain. It was in Braintee, and id never driven there before either. So i would of had to follow a sat nav, which again iv never done before. So as i was really an nervous wreck my dad offered to take me! And also drive home from the hospital for me too, so i rang up my insurance company and got him insured on my Audi, was easy peasy!

I had such a lovely night at the wedding, cried a lot too, and my stepbrother proposed to his girlfriend too! Was an emotional day lol here are some pics

                                                                   Me and my step sister jas

                                                              me & my brother and sister

                                                                        me and rheannon

                                                             ethan in our premier inn room

                                                    i was vey excited to stay in a premier inn! haha

                                                           jasmin and my step dad

                                                          my step dad, jas & my mumma

me and ethan

my wedding outfit! 

Had such a lovely day! 

Iv been feeling a little rough since coming home, coughing alot more and feeling very breathless too! So i have clinic tomorrow and il start ivs, hopefully i wont stay in as its my birthday Thursday! YAY!! 

Will let you know how clinic goes! 

5,335 hours on the transplant list !

Last time i wrote about my friend Clare, saying she was very poorly and needed her call for transplant soon as possible. Im sad to say that she passed away last Monday. She was a very strong brave lady, her call didnt come in time and this makes me so upset. We talked about what we do when we both have our new lungs.. we was going to go shopping for hours with out coughing and eat loads and loads of sushi. Her funeral is on the 3rd of May but i wont be going as other people with CF will be going and i don't want to infect others with my stupid bugs, so iv decided im going to plant a flower in my garden for her. Im going to get some 'forget me nots' lovely and blue for her.

Me and my family went away this weekend to my Nan & Gramps caravan in Great Yarmouth, was so nice to get away and just forget things for a while.

Today i had clinic and im now off IVs, Yay! Im having a week break then going back on them next Monday...Nice to have a break as im very busy this week too! I cant remember if i wrote in my last blog that i spoke to someone about how im feeling, and we have both said that i have been very low recently, im now on some tablets to help and i think they have made such a difference. I do feel MUCH better in myself now. Making lots of plans for weeks ahead, which i wouldn't normally do. This Friday i have my step sisters wedding so im looking forward to that, then me and my brother have an exciting day planned for Saturday! Cant wait! Then next week is my birthday and my godchild is being born!! Sooooo excited!!!

I have my Transplant Clinic this Friday, as iv now been on the list 7 months, so il post how that goes after, thank you for reading again!

5,192 Hours on the Transplant list

Well iv been in hospital a week and a day now, its gone so slow too!

The nurses have been quite worried about me, they keep asking if iv given up cos of my mood. But i most defiantly haven't ! Iv just had a few rough weeks but im starting to feel alot better... They sent me to see a some one to talk to about my feeling ect (cant remember what there called lol) Speaking to her has helped and she has advised me to go on some tablets to help me. I dont want to be on the full time but maybe just to get me out of this rut. So iv been on them about 5 days now.


Earlier this week i had a reaction to a new anti sickness med. I was feeling so sick from all the IVs iv been having, and due to this i wasnt eating or doing my feed. so my normal anti sickness wasn't working so they gave me a new one and it effected me so quickly before the nurse had even finish pushing it all in me i went all light headed and couldn't talk, my mouth felt like it was so stiff and i just couldn't open my jaw, then my arms went heavy and dead and i couldn't move them... Luckily the dr was doing his ward rounds at this time and came in when all this happened so they stopped it straight away and changed all my IVs. So now i feel loads better, not feeling sick and now i can eat again!! I celebrated with a domino's last night! Hehe

One of my very good friends Clare is in Papworth at the moment and Shes not very well at all. Shes now been in here 12 weeks, she had the Flu and its knocked her back quite abit, could you all keep her in your thoughts and pray that her new lungs come up asap!! Shes only 3 doors down from me and i cant even go see her.. makes me sad i want to give her a big hug!




4,995 Hours on the transplant list

Iv been feeling a little bit low recently, with the brake up to me being back in hospital and having this horrible cold, i just feel fed up.

Iv never felt pain like this before, the heart brake of someone not feeling the same as you and wanting different things after all this time together is so hard to handle. I feel angry as well cos he left when i needed him most. I needed him to be here for me and tell me everything is going to be okay. I thought we were in this together. He has truly hurt me.

On top of that i have this horrible cold, iv lost my voice completely! Some see it as a blessing though lol. I cant stop coughing either, im having a hugh coughing fit every 5-10 mins, hurts my back and giving me really bad head aches! Iv also been waking up with head aches and think my oxygen overnight needs to be turned up to 3 litres..Iv got to have blood gases in the morning to check before they do change anything.

No calls from transplant yet either! :(

4,834 hours on the transplant list

Hope you all had a lovely Easter Weekend!

I was dreading the Easter weekend to be honest, as it was my first long weekend while not being with Ben. But i ended up having one of the best weekends id had in a long time!

On the Thursday just before the weekend i got paid early, and thought id go to town by myself to have a look around, but town is just useless! I wanted to get a nice outfit to wear as i was going out with friends..but no such luck. So i thought the only way im going to be able to get a new outfit is if i order online and get next day delivery...but i knew it wouldn't get here cos it was a bank holiday. So i sat in my car dreaming of being in Topshop and getting more depressed that i couldn't just go. But then i thought no, im not just going to sit here and let it win, i checked i had my oxygen in the car with me, i did, then i drove to Cambridge, i had my music on loud and was singing along feeling good!

When i got to Cambridge i parked in the disabled bay so it was only a short walk to Topshop & i had my oxygen in my bag ( i didnt have it on, just brought it with me in case i needed it). I was only there an hour but it felt so good to be doing it on my own! Walking around, felt a little breathless but not so much that i needed to put my oxygen on. I brought lots of pretty clothes, shoes and a bag! I got home had a bit of a cough but i still felt good! the only thing that was wrong was my back from carrying my oxygen. its so heavy!

On the Friday i went to my mums as her friends were coming down, there the nicest couple you can meet. We all went out for lunch then back to my mum and step dads for the rest of the night... On the Saturday i went shopping again with mum, my sister Rheannon and my mums friend. I went in my wheelchair this time as i knew it was going to be a long day, and we still had a good time! Me and Rheannon went off on our own and had a nice lunch and brought more pretty clothes! :) Then i was out that night with Stacey! We had a good laugh and a good catch up :)

The next day i went round my dads as he had family round for dinner, was lovely! Then i went out again that Sunday night with my cousin Emma and a few of her friends....While i was out i walked to the bar 3 times and walked up the dreaded stairs to the toilet twice! Very proud of myself for this weekend, as i am i on IVs too and still managed to have a good time :) But now i feel a little poorly, i have a cold :( I have Clinic tomorrow so il see what they say although i think they might want me to come in to go on my 24/7 drip for a while...but we shall see!!

Thank you for reading again :)

4,733 Hours on the transplant list

Well these past two weeks have really been tough on me, mentally, emotionally & physically...me & my boyfriend are no longer together, people may want to ask why or wonder what happened but im afraid that is just between us,  but we had a great 3 and a half years together and have a gotten a great friendship out of it.

Im still waiting for the call to come, and waiting for an appointment from the transplant team to see them as iv been on the list 6 months now! wowzers thats gone fast! Health wise im okay at the mo, iv been off IVs for 6 days (which has been lovely) and have clinic tomorrow. I will be asking to go back on IVs though as i am really breathless, just walking around my room is making me quite short of breath. But im asking to do the IVs at home as i have my two besties home this week and want to see them as much as i can!

Iv been thinking about how im living at the mo, and i don't do much at all ... nothing!! I need to be making the most of my days i have out of hospital, i need to make a 'do more' plan and keep to it!

Plan one; Apply for a course, which i have done!! I got it through on Friday! So now i can have days i put aside for studying, to keep me busy and keep my mind active! lol

Plan two; Cook more... I never cook, ever! i cant im so bad, but i want to and iv been online looking at recipes to do... im liking the look of a Cherry Pie..this will be my first test lol

Plan three; Go out more, i do like to get out in my lovely car and drive to visit people, but im always in someones house, i need to get out and about! My bestie Stacey and i are planning to go Cambridge shopping next week and she is going to push me in my sexy wheel chair! lol

Plan Four; Pictures & scrapbooking! Iv got a brand new camera and a lovely scrap book i want to fill up! I want to take lots of photos of everyone and everything!

So with my course, cooking and getting out more i should keep myself busy!

Thank you for reading as always!


4,497 hours on the Transplant List

Well as some of you may know, iv come off Facebook for a while. Iv had something personal happen and I really can't deal with people asking questions and so on.... So I hope people have saved this link, you may share this on your Facebook I don't mind that!

I had clinic today, my infection level had been doing well, It's now 28, which isn't to bad for me. Iv lost 4lbs, but I knew I would as iv had a rough week. I'm now off ivs for a week too. So going to have a nice week getting out as much as I can :)

Iv just started a make up course too! Will keep me busy :)

Iv also been on the transplant list 6 months now!! No calls as of yet.


4,359 hours on the list.

Part 2 - February

Heres part two as promised!

So i came home on feb the 1st and was so so so glad to be in my own bed! I'd forgotten how comfy and cosy it was!! But as i had IVs to do i had to stay up late to do them... after they were done i hurried upstairs to my bedroom and fell straight to sleep. Up early the next morning though for more ivs, but i did have the best sleep id had in ages!

Im not sure if it was the fact id been sitting around in hospital for a whole month or not but i was very breathless, just walking around the house was hard. I couldn't face going outside walking cos id know i couldn't do. So i went to hospital for my clinic 5 days after being out of there and they wanted me to come back in the following day for some more treatment and physio using the 'Bird' which im not sure if i explained what the Bird does, while im having physio i use this as it pushes air into my lungs forcing my airways to open up and my mucous to shift and become loose, so its easier to bring up .. Yuk! not a pretty description! lol

So I was back in and put in a small corridor room, which didnt have a bathroom or toilet so i had to share one with the other patients. Which i wasn't happy about because of cross infection but hopefully i was only staying there a few days, which i did, i was moved to my normal room a few days later. So as many of you may off seen i was on telly last week for Organ Donation awareness  From The Heart!!! On ITV news! My Dr told the team id be up for an interview with them which i was, i was more than happy!I meet the ITV news team, they were all so lovely and nice, They filmed me and told me they would edit it ect and id be on the following week... But once we had filmed the piece they were so happy they asked if id do a LIVE interview with them! Ahhhhh! I was so excited! they came back the next week to do the live interview. I was so nervous! i couldn't sleep the night before because i had no idea what i was going to be asked... and of course my hair wouldn't go right that day! lol  They came and set up about an hour before and Lawrence McGinty asked if i wanted to do some practice questions...YES! lol that made me feel so much better and i relaxed a little bit...The interview was over so quickly, i ha such a good time doing it...and the amount of lovely messages i received after was overwhelming. My phone was going off up until about 11 that night... texts, calls, facebook & tweets! So many!! lol  It was so lovely to be a part off! in that one week They had 147,000 people sign up to become an Organ Donor!! So well done to those who did, and those who didnt do it now!!! lol Il put a link at the bottom off this blog for you ;)

here are some pics ...

 Behind the scene look 

 From the Heart pose

 In the daily Mirror!! 

A Valentines card from the ITV news crew! so nice :) 

Sign up here - 

https://www.organdonation.nhs.uk/how_to_become_a_donor/registration/consent.asp 

So after that bust few days.... I was there for about a week and they said my infection had gone from 70 to 18 so i could go home on IVs again! So im home again! the IV times were better so i was sleeping alot easier.... after being on IVs for 5 days i had clinic again but this time they said i could stop my IVs!!!! Yaaaaay! i was so happy! After my Dr telling me i wont be coming off IVs ever this was great news!

Its now been 6 days off IVs, and strangely im doing well! Iv put on weight, i feel good and im not coughing alot. Its been such a good week :) Iv have been going out and when i know il have to walk far iv used a wheel chair! Iv used it a few times this week....Once with my sister, she pushed me around like a loonly person! She was going about 100mph! haha


Iv got clinic tomorrow to see what to do next but hopefully they will see im well and let me stay off them for an extra week :) il update after!


3,828 hours on the transplant list

Part 1 - January

Iv been so bad this year about updating my blog, i am sorry if you have been waiting for a new update. This year has been so ... hectic! So much has happened and its only February! Il do my blog in 2 parts, January and February. So part one -

Well I had a wonderful Christmas, had such a lovely time spending it with my whole family, Ben and his family. I did push myself to much though, i have to remember i cant do things normally any more, but i was running around nearly everyday, not sleeping long and not eating much so of course it caught up with me, On the 29th December I had plans to see my friends Stacey & Sara, we planned to have a Harry Potter day and  to pig out on sweets. So we went to Tescos BUT i was so tired i had to wait in the car while they got to food. Then once we got to Saras we put the film on. Sara gave me a pillow to lay on and oh my goodness it was the most softest, comfortable pillow i have ever felt! I couldn't help myself, i tried to stop myself but... i fell asleep!! When i woke up i couldn't believe it, i have never fallen asleep like that before, i really was tired and really need to rest. The next day i spent all of it in bed. Sleeping, sleeping and sleeping. Then on New Years Eve i woke up still feeling awful, i had a family party that night too so i wanted to be well enough for that. But then i got a horrible shooting pain in my left shoulder, the pain wouldn't go, when ever i took a breath in it was the most harshest pain iv ever had. I had to ring my CF nurse and let them know. I thought to myself that its a collapsed lung, iv heard how painful these could be and i just knew that this would be that. My nurse told me to come in to have an X-ray and start IVs  So obviously i was panicking and was in a right state, i couldn't even pack my suitcase, Ben came up and got me ready and packed for me. We then left to go Pappy, my mum had cancelled the family party she said they didnt feel up to it now i was in hospital, i felt so guilty that i messed up everyone's new year plans. So got to hospital ( i had been on oxygen since i woke up, felt to scared to go without it ) slowly walked up to the ward and then all the tests started. Bloods, X-ray, drs checking me over.. all that jazz. My dad then took a sort day at work and came up to wait with me and Ben to see what the x-ray shows. I had my fingers crossed the whole time. I always crossed them whenever i get scared lol. So Dr came round and said there's no collapse!! Yay! such a relief! The pain i was having was a pulled muscle from coughing so much! Couldn't believe it, but was so happy lol  They wanted to keep me in hospital for IVs as i had a temp of 39.

So spent my new years eve in hospital, in bed and asleep before 12! haha. I know how to party!

Right next, i was packing my suitcase all ready to come home after being in hospital 10 days... but i woke up the next day with an awful cough and a temp of 39 again. So the drs didnt want me to leave. My infection level should be under 10, and the day before i was going home it was 12. BUT that morning i woke up it was 170!! The nurse that had been looking after me had a cough/cold. She wasn't wearing a mask, gloves or apron. So i think i caught something off her, i did complain to my Dr and the head nurse, but they didnt really say anything about it.

After a few times of changing my IVs they said i could go home, but again on the morning of going home i woke up, coughed, but this cough gave a horrible sharp pain in the top right of my chest, after i finished coughing the pain had gone. So i felt fine to go home. But the drs wanted me to have a X-ray first. So i went for my X-ray, came back to my room and waited to hear what it showed. My Dr came in almost straight away and told me i have a mucus plug in the top right of my chest. He said i need lots more physio and would need to stay in for a while more. He said that this plug could go but sometimes they just don't. So i unpacked again! I had been in 3 weeks now. Was so very fed up, and getting very down. I had lost weight, not eating alot and having horrible thoughts. So a week later they said i could go home! finally!! I went home on the 1st of Feb so i had a whole month in pappy! I went home on IVs though. They said that they want me to stay on IVs permanently now, so now me my nan and gramps do them at home :) we have a little system weve made up so it doesnt take up to much of my day which is lovely! i can go out for a little bit and feel normal! My IVs are 3 times a day. 10-4-10. so there not to bad!

Right thats the first part of this year, il do part two soon and as you may know.. Its very exciting! Hehe


3,652 hours on the transplant list.