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