Monday, 21 September 2015

Home post transplant!!

Thursday 

Woke up stronger and full of life, saw my beautiful consultant and my life saving surgeon and the rest of the crew for ward round. 
All was good and getting me ready for home, I was taken off tac but they still wanted to keep neckline in,, ahhhh was driving me mad! I wanted a proper shower and sounds rank but I'd not proper washed in a few days cause I knew neckline was coming out. They said home tomorrow as in Friday 18th I was buzzing!!

I managed to do so much more walking today, flight of stairs a lot quicker and steadier and walked the ward upstairs and back and down stairs and back to my ward and room again, with a little help from my gomey/pimp stick haha 

It prob doesn't sound a lot to people but I'm weak I really struggling to walk at the moment, it's so annoying because my lungs aren't stopping me, I just have lost all muscle. So seriously advice to people waiting, it's so so important to keep your legs moving and strong even if you can't wait do leg exercises to keep them string cause post tx you don't know what hits you, everyone different you can sail through, if I hadn't had tummy problems I would may have been up on my feet so much quicker. Keep in mind!! 

So Spent rest of the day wiped out but excited and nervous about the next day HOME!! Firstly I was worried something would happen to change there mind or some bloods come back weird etc 
But then I was nervous about leaving the hospital bubble! No constant Monitoring, what happened if something went wrong, these aren't my lungs, what happens if they turn on me and no1 knows not even me! Sounds dramatic but this is so new! 

Anyways I wanted to be fresh for leaving so I gave up with neckline and had planned a shower! Then at 6pm nurse comes in with big magnesium drip, she said my levels were really low so needed 2 hour infusion. Panic hit thinking this was going to stop me from going home. Nurse said should be ok. Obvs then shower was out the window cause I didn't want mum staying later cause she was going to be up earlier with lee to get me home. But typical mum didn't mind waiting. We watched you been framed and omg the animals had us in stitches which had me in pain/ laughing my head off. Laughing is a painful experience at the mo but worth it haha 

The magnesium drip gave me hot flushes, I wasn't hot outside or swearing but it was like inside so weird, nurse said to slow down but I just wanted shower so I was nah it's ok, whacked the fan on to help which it did! 

I was counting down the seconds till the infusion finished. Finally it did lucky just before hand over! She flushed me off and I raced to the shower! 
Then we couldn't find my tangle teezer! So mum bless her to help my hair went off to tesco to get a brush for me. No where near sold one but a comb, actually wasn't that bad, got to be so careful with hair now, as thinning and not growing. 
I had the best shower standing on my own, washing myself! It felt like heaven!!  
Had lovely nurse Emma but I didn't need much care so didn't see her thru the night. Lovely Chris who does my obs we spent ages chatting that night and before mum went home he showed us the picture we had with the mayor of Hillingdon haha 

Friday!! 

Early start, has another magnesium infusion at 6am so that was me awake and excited at he thought of going home, mum and lee were coming together at 10! And couldn't wait. Had bloods done at 8.30 for my tac levels (anti rejection) and other bloods and was told they would be back in an hour. I was so nervous something was going to crop up! I was prepared to stay but mentally not really I wanted home ASAP! 
So mum and lee arrived in perfect timing, I was due for an echo, which looks at your heart, my socks were under my chair and I couldn't get them, once I get on floor I literally can't get back up! Hahaha so they got my socks and porter turned up so lee came along with me, he asked what it was and I said well boobs are out so no questions asked he was coming with me hahaha 

Had to wait a bit was quite busy as it was clinic time, finally got in and saw the lovely lady who has done my echo last few times in my room, I couldn't stop shaking, the drugs make me shake but that day I was like some crack head. Had to lay on my side and my leg was shaking so much ha
She showed me where my heart valve doesn't completely close now since stent was removed, it's kinda lodged open now, bit crap but hey ho I'm here so could be worse!! Then I got a little copy of my heart beat which was quite cool, I'd have copies of everything if I could! Haha 

So that was done, didn't wait for porter lee brought me back in their wheelchairs, he was a terrible pusher, but il give him credit the wheelchairs are like awful and big! 

So I was hoping they would have blood results when I got back to ward and to get that bloody neckline out of my neck, still no results but I was aloud my line out! Best feeling ever, although a stitch got stuck but weirdly felt good to have it come out! I use to panic about the idea of stitches coming out, but I love the feeling, I'm such a freak I know! 

we waited and waited and I was getting nervous it was gone 1 and still no results, we asked a few times, then lee asked my nurse again and he was like OMG my tac levels were so high! 
That's it I thought not going home, fuck sake I was gutted. 

Dr came in and said basically levels have to be between 6-13 and mine were 39!! So way to high 
First thing I said was, so I'm not going home she said no it's fine you can go home, just don't tac this weekend and when I go to clinic on Monday have bloods and take 0.5 after. 
I'd spent most of the recovery being told my tac levels were too low and I wasn't absorbing it and now to the extreme there too high, Typical! I was a little panicked when she said no tac for weekend. I thought noooo what happens if my lungs reject over night, can't help but think theses things. Anyways I calmed down and was so happy I could go. Just had to wait for discharge letter. 

Lee and I before leaving 


Once I escaped I walked to carpark by the pavilion, was weird and I was so shaky but I did it! Then getting into car felt so weird and the thing actually moving omg felt like a rollercoaster, we were going about 30 and I was OMG slow down hahahahaha and every time the car in front braked I panicked. So unlike me, I need to stop being such a wimp, need to man up! 

On the way home we went straight to get our nails done, I had to mine were awful, the staff were so lovely and gentle, I told them where we had been and why is not been in, and my hands were shaking so much I dunno how he's managed to do such a good job! Lol bless love that shop. Then a lady over heard and before she left she wished me well with my recovery! 


Getting home (to my parents)  and sitting on a sofa was one of the most amazing feelings, not a hard chair, not a bed a nice cosy sofa! I was also greeted by my family's dog beau who was running around in circles and beyond excited to see me! He loves me, and didn't stop following me, even joined me in the loo! 

Had the best dinner mum prepped and I cooked it! Fajitas one of my fav!! And I are so much, soooo good! I felt exhausted that evening and lee stayed which was so lovely it's been months since we shared a bed! 


Saturday I woke up ok but as the morning went on I felt so awful, my tummy was rubbish and I was so tired I could barely stay awake, was getting my hair done at 2-3ish by my hols so needed to rest but couldn't sleep. Dad and I had a good catch up and watched crap to together before hand then I went for a lay down and before I knew it everyone was home and ready for part two of girly pamper sesh! 

Love love my hair feels so good had a mini cut because no hair on my body is growing so didn't want a big chop! 

It was my one month since having my transplant so when lee turned up we all celebrates with a glass of bubbles then lee holly and I had a nice curry! 


Sunday I woke up at like 6, seems to be what I do now, early riser! And decided I wanted to pimp up my gomey stick and wanted to go to hobby craft! I bought if I go mega early no one will be there! 

So mum took me and Hannah joined well bit busier than I thought but so big I avoided every person I didn't touch stuff haha paranoid and went straight back to car! 
Couldn't help but do a selfie 

Pretty exhausted after and then I went home to rest before I went to my in laws for a lovely roast and to see my little baby mason (our dog) 

We turned up and mason was so excited but couldn't have him jump up, would have knocked me down, everyone was quite protective over me with him, to be fair I smelt like mums dog so he just wanted to sniff me! But we did have a nice cuddle when he calmed down! I can't wait to have him home when I get home and back to normal! And can't wait to take him for a walk not in a wheelchair!! 

Me and mason, he's such an awkward dog, and prob hates me now I've not had him for so long! 

Evening didn't go as well as I hoped, I don't seem to be able to digest food in the afternoon, God knows what's going on with my tummy but it's not right, get to 4ish and I get the worst stomach cramps, and I feel sick! It's so frustrating cause it ruins the evening, it seems to happen every few days, belly still bloated but my weight is only 34.8kg so it's so hard!  

Anyways so clinic today so will blog after that's done if there's much to report! X

Wednesday, 16 September 2015

Getting closer to home

Monday- 
So today started off well, I've officially stopped using the commode now and walked to the toilets, I still walk like I have a stick up my bum ha and legs are like jelly, since not walking. Since frimley, I have beyond imaginable muscle waste. Every time I stand my calfs feel like there not there and my legs are going to give way! But I'm pushing it cause if I don't il get know where! 

So today I done stairs! Wow hard work. Did about 6 steps up and down twice I think it was or maybe. 3 times. My left leg isn't as strong as my right so I have to go up on my right and down on my left. I've been given a walking stick to help now for when I go home. My have to get lee to pimp it up, the wood effect makes me feel like an 80 year old woman! Hahha

So I was impressed I done that, felt quite faint after, but I still done it! And Dr and another surgeon walked pass so always feel good doing stuff Infront of them! Feel proud! Didn't cry this time! Getting back to less cry baby George! Ha 

So something I wanted to mention, although I'm very positive and head strong, I want people to know that it's normal to feel over whelmed by all this, today I started some tablets to help with anxiety. 
Now I would never in my life agree to anything like this, I'm a true believer in self healing but I've never experienced quite an ordeal like all of this in my life! And I'm not ashamed to admit I do need help! I think it will make me stronger and heal me mentally quicker. I think and I'm first one to admit that taking stuff was always a sign of weakness and not being strong but far from it! These people know what there doing and I trust them so i know won't be forever but until I go thru this rehab process I'm going to go with the support! 
I'm still crazy little Sprog who will prob say all the wrong things and  inappropriate things at times sorry mofos that's me! Haha   

Anyways so today in the afternoon I felt quite faint and tummy had the worse cramps and felt awful I was in a lot of pain, I ended up being sick and then slept for 2 hours. Tummy still not 100% and it seems to be happening every other day so just need to take it easy with food and keep moving lots. Get this tummy back to normal hopefully soon, come along way with it, worse part of this bloody process! 

I felt great after a sleep and then I had a little chat with nurse about things I can and can't do 1St get home meeting. I also got new Nebuliser and lung function machine and medicine record book! All crazy! Tomorrow is last of my tac on iv I hope as levels getting better! Off all ivs apart from that one. It's a good feeling, feels like home is close! 

I'm still very very week and I think if I do go home it's cause I don't live far but il be back twice a week all day so although home il be in isolation and basically swapping hospital for my mums house! Got along way to go yet! 

I think people think wow new lungs home she's better back to normal! Far far from it. It's gna be at least 3-4 months or could be longer! Just being in hospital your more open to infections. So cause I live closer I can get home quicker! But anything could happen and I could be back just got to take it day by day! 

Now onto brighter note I can whistle, makes up for not being able to talk yet as vocal cords are paralysed! And I can proper kiss lee without it being a pathetic peck on the lips! Laughing hurts learning to use tummy muscles from the op! I sneeze weird and learning to cough again is so weird.. I yawn weird, like I take about 5 deep breaths whilst trying to yawn, it's quite funny at times! 

Trying to think of the things that are different, I can't wait to try blow up a balloon without using my nebuliser the cheating way or a bike pump! And in summer both up inflatables. It's the small things people don't even realise! 

Iv had a few visitors now pass few days other than my usual mum and lee bless them they need a break from this place! But now getting more steady shall I say I don't need them at my beck and call! Just want them haha

So Tuesday has been so amazing in different ways. 
I woke up and went through my tablets with nurse so I'm self medicating and no what I'm on and not on now, still on iv tac but should be last one, again changes daily! 

My Physio showed my lung function machine for home and explained about it all and drops and where to write it down in my little medicine book along with tablets etc. 

Then we done 6 minute walk test! Now I can't tell you how frustrating it is now being able to breathe but my legs not letting me move! My body is so weak but my lungs want to run and run miles ahead of myself but I just physically can't. I've lost all muscle literally my legs have never been so thin and I have twigs anyway, you can see the bone so clearly it's horrible. My weight is only 36kg and it's true what they say about weight pre tx cause you loose so much muscle and weight after. 

Anyways I sat down once on walk test and had my walking stick haha but was so slow and didn't walk back I was so weak! Still those baby steps but I'm still going well! 

I have to be so careful eating at the moment, tummy still not 100% and sometimes I have no choice I'm just sick so have to eat little and often which when your a fatty on steroids all you wanna do is eat everything in sight! Haha 

Now the best part of my day, they had an open day for the theatres where people have there transplants going on at Harefield today, mum and I wanted to go but then thought nah can't be bothered. Until one of the hca (healthcare assistant) came in and said we must go see it, so she was so excited we made the little trip and so glad we need, Everyone was lovely and it was nice to see people who were Involved in my journey awake. 
Had a few people say hi and obvs being so new having it all everyone was happy to introduce me to the mayor who was there at same time as me, lovely guy and he had had heart surgery so was nice to talk to him about his experience with Harefield too. They wanted a pic for paper, I looked so rough great!! Really gonna have to make some effort once home so people know I can scrub up ok! Haha

So I felt and saw a pair of lungs which was fascinating! 


And mum did a blood gas on a fake arm! I was too shaky couldn't do it! So annoying! 



So I came back buzzing from that! And then chilled for evening! New fav problem the hotel inspector! Haha I want to own a b&b now hahaha 

Wednesday 

So normally big ward round but everyone's away at a conference so no consultants. I was hoping today would be the day where I would be off iv tac, but no :( 
Review tomorrow they said but everything. 
They forgot to request bloods so didn't take tac as on oral too till late cause have to have bloods before I take it at 10am it's like my kalydeco days 10am and 10pm. Btw that's something I haven't mentioned I am now off kalydeco since transplant as the drugs clash but I always new this, possible contribution to tummy problems, kalydeco helped all aspects of cf and creon amount was a lot less and in icu they just gave me creon and stuff cause on drug chart. That's my theory! 

Anyway back to today so bloods finally done about 11.30 then I had to wait an hour to eat as you can't eat hour before and hour after you take tac. 

Around 1.30 Dr came in and said Dr Carby wants to stop iv tac and had to take another 2.5mg of tac. So happy iv stopped now so hopefully neckline should be out tomorrow!! Happy happy on no ivs now! 

So today done stairs again and did one level so happy and down again!! Lee videoed it but don't think I can add videos to blog! 
So Physio said that's it now passed all home bits so getting closer just need a day/date! 

I had a little episode with tummy again around 4ish but I'm not sure it's tummy probs or me trying to get use to the amount of creon I need to take now! I forget cause my lungs work that cf effects other parts hahah it's always been my lungs my main focus! 

That's my little update I am going to go they pics when home and add once home so I can do the full journey in pics! Writing gets boring I'm sure everyone's bored of me rambling on haha 


Love love to all xxx

Monday, 14 September 2015

The reason I started this, my transplant surgery!

Where do I start.... 

The reason I started this blog all those years back was leading up to these last few weeks and wow nothing can quite prepare you in my eyes for what's happened! 
I will always be true to my word and be honest in this blog as I have always done! 
I've read many blogs but I think they are written in the land of fairytales sometimes or its people's way of coping, no1 wants to hear the struggles, but my god there are struggles, and I'm quite a tough person I like to think. But this has knocked me side ways! 

I think it's best to work backwards, and yes will be a long blog so prepare! 

I'm now 3 weeks post tx and have to say very emotional, I have been hard on myself at times and other times I have wanted to give up. Can't be superhuman all the time, but then I have days were I'm like fuck yeah I'm back bitches! 
No1 tells you all the horrible bits that come along with the aftercare and recovery, and I've constantly compared myself to other people and that's what's made me feel like a failure, despite been constantly told I'm doing so well and my lungs are so good! 

I've been waking up in panic attacks, heart pounding after having weird dreams or hallucinations. Panicking that I need oxygen and that my lungs aren't working when everyone reassured me they are fine. It's so weird you live your whole cf life worrying or knowing how your lungs are and what you need, transplant plays with your head! 

I'm really gutted I've left it this long to blog but I physically couldn't look at my phone let alone try and write about stuff. Days I've spent just numb from everything emotionally, laying here crying or just spaced out. I've had blocked bowels for over 3 weeks and due to them removing my port when I had my tx I had no access points when my groin central line went so had cannulas even though I begged for a pic line. I ended up with cannula after cannula. My body was full of fluid, I was so swollen, day after day I was having things put down me to help bowel movements even up my bum! The amount of times I've just given up caring, it's not what a 25 year old should feel like. It's not what I had in mind for my transplant at all! 

My brutally honest blogging is back and this time With new lungs... yes you heard correct WITH SHINEY NEW LUNGS!  Sorry it's been so long! Mum and I both used to follow the odd blogs and when they got their  call and you wouldn't hear for months it's so hard, so I do apologise and to be fair my poor mum has been thru all of the bits and conversations with lee and sometimes the last thing you want to do is go over it in your head! I've only just got back to planet earth ha!  I kinda forced this blogging on her so doesn't come as natural, ha and she's been thru hell with me.

This blog is a bit all over the place as I've been trying to write and keep note for weeks so might not always makes sense but if you follow my blog you know that much about me anyways ha.. 

So MY last blog was about my 2nd failed call. I was gutted but after the 3rd ESP when the 3rd was a heart beating donor-I thought this is it and it could happen so quickly, but most of the times I am so surprised at my reaction, I was so bothered about being hungry and wanting food, maybe this was my coping mechanism! The donor wasn't right for me but the lungs we're still used for someone else so again happy George for the donor and the person getting the lungs! 

I'd gone from having my first call, to nothing for a week to then nearly having them every other day! It was tough and I was getting weaker. I knew deep down I wouldn't give up but my god was I starting to believe the fight was over! 

So literally day after my 3rd call I said to mum in the early hours, right I want breakfast mega early just in case we get another day call! I can't afford to lose weight! So she agreed and came over while I was still asleep, the nurse came in and mum said what our plan was to get breakfast in early and they asked her to go out of the room. 

So I woke up a few minutes later to Tom the coordinator telling me we have a donor! Heart beating! Mum knew a few moments before because of mentioning food. I was so convinced it wasn't going to happen so me being me was annoyed I couldn't eat! Lol I know sounds so Selfish, but once you get into what we had, it was my way of dealing with it. Apparently they had been going thru it all in the night and got back-up in etc but didn't think I needed to be woken up. That was quite nice to be fair. 

Anyways a few hours went on I started washing as it took me hours and I wanted to take my time. Called lee obvs he came ASAP. 
But it did feel a bit more real, something felt different. I tried not to read too much into it. Anyways it was a go ahead. They had to get me down early to remove the stent etc. they gave me a bag of blood before, O which I thought was weird as I am A. Then I took my first anti rejection tablets! Was so real then and a bit scary! 
They brought a trolley down which felt like Mount Everest trying to get onto with everything still attached to me. 

Then off I went down to this room with bipap on and was put in front of this pond thing on the wall where I would say bye to mum and lee and then went off into the anaesthetic room! Felt so weird but still not how I ever imagined, my body was giving up so I was too tired to take much in! 

They put some weird things on my head, wish I had my phone to take a pic, and they were rushing to get me in I think! 

So that was the part 1 to my op day! 

Then when I woke up, 6 days later I think they said!? Now this is a bit muffled. Second time waking up on a vent, but this time I had this woman shouting at me to stop and holding my arms down, I kept trying to tell her I'm not going to pull it out and she was stressing me more for holding me down, felt like a criminal! 

Anyway she eventually chilled her pants and realised i was more awake and just wanted her to stop restraining me! 
Sorry that's the only negative bit about staff I have come across here so far but the other team who were with her were lovely and once she bugered off and got the vent out they put and epidural in my back! And there we go I was awake, well awake as in eyes open said a few words, actually understanding what everyone said to me was a different matter! I'd lost a lot of hearing and was still pretty out of it! 

I have to admit I was so disappointed when I first woke up, I was so chesty and ratterly, I didn't feel like these were nice clean non cf lungs. Although I could breathe easier than before, I was so chesty! I always heard stories of how you wake up feeling like your body has been in a car crash but you can breathe and it's amazing! Yeah lies all lies ha, well for me anyway! It didn't happen straight away! I almost felt like I wanted my old lungs back, it was a bit of a head messer to be fair. 
But my body didn't hurt too much, in fact they gave me this button thing I could click whenever for pain and I barely used it! 

So ICU was a bit of a blur, I was hallucinating mega! Everytime I had mini sleeps I would dream that I was stuck on an island and we found this cave underground it was full of black people at a top secret transplant unit in the world but only I could see it! So bizzar 
Then another time I thought there was a siding door in my room and the door lead to a swimming pool that some hospitals have for Physio and i full on imagined mum and her friends came back from the pub one night and the anaesthetic team were in my room having a cheeky gin to get them  thru their  shift and then they all hid and went for a swim! It felt so real! Obvs not. There's no pool or sliding door in my ICU room! 
Then the day I left ICU to go back to Rowan ward I imagined whilst waiting in the bed to be moved that they were swinging the bed around in circles but every time my eyes opened I was In the  Same place! Hahaha drugs do weird stuff too you! 

ICU itself I didn't really like, in a room on my own with someone, which was fine if you liked them but shit if you weren't keen. 
The two days after I woke up in ICU I had to have bronchs which Dr Carby done while awake. 
I didn't like the visiting hours, I just wanted my mum and lee there all the time! 

Since being back on Rowan ward things haven't been great tummy wise! I'm having major blockage problems and it wasn't shifting! 
Been over 3 weeks now and all I wanna do is get these lungs working and get my strength up but I look about 8-9 months pregnant. I can't sleep, I can't eat, relax, I've had so many X-rays on it, not absorbing my anti rejection stuff properly it's all gone a bit crap that's why I've not been on my phone at all, I'm either asleep or trying to relax and I've never let so many people have to clean me up. This seriously is my worse part of the whole process and it sounds so minor! I still had two chest drains in up until a few days ago so all in all was hard work.

Was told a few days ago lungs showed on X-ray that they were not great but we have had problems with lines had all sorts of cannulas in different areas, they removed my port during the transplant due to the position.  The bank holiday hasnt helped and with all this tummy stuff all I want is a bath! But they just do showers here :( I knew it would all be sorted but for the last 2 weeks all I've had is stuff stuffed in my tummy and up my bum and people saying any day now it will clear and it never did! 
I Wanted everyone to just shut up saying it to be honest. I had another bronch gone Friday and they got a central neck line in, I was put under so less stressful! All came back ok I think, things change daily, until tummy clears up everything had been put on Iv as I wasnt absorbing anything even iv tac.(anti rejection) and they put me on something called tpn for two days and it really did boost me! It's like a food supplement that goes straight into the veins. 

Last few days have really improved I still have no voice n struggling to swallow, it's weird I still can't feel my boobs they're so numb lol and mega lost my hearing but Dr Carby said its a small price to pay to be alive! He also said they were very close to not going ahead because I was too unwell, so thank who ever you are that they believed in me! I've been very emotional over hearing that! I'm trying to do as much exercise as I can now my belly has calmed down and I'm determined to get out of here asap. I'm getting  stronger on my legs and lung function was 45% at first attempt I cried I was so happy! Sugars were sky high at 29.6 so not sure what they done as I've slept but back down to 5.9 now! Like I said things change daily/hourly here!! That's why I'm bound to have missed loads! 
They changed my room last week as I begged! in the end being in the hdu corner is so stressfull! So in room 4 now and love it plus it's bigger and quieter! 

Sorry wrote all this on different days, I'm now making massive improvements, I can walk more, legs still very weak, I'm not using a commode now I can actually walk to toilet or shuffle at times, belly still big but getting there and eating again now and cause I'm moving things are becoming more normal
I've managed to walk from my ward to entrance and into canteen twice now and done step up on stairs, I also had a massive laughing fit at my auntie walking into a door whilst filming me! 

I cry every time I do something big and although I can't hear and talk I can whistle  really loud! 
My oxygen sats are 98-100 and I'm starting to panic less now! I'm learning that everything is ok and I need to have more confidence, whenever would I be like this! George is coming back mofos and I can't thank the team here enough, the whole hospital, you build bonds, special bonds with staff! 
I'm on a mission to get home now, too much time wasted on my tummy! I want life to start now with these beautiful lungs and need to train myself to breathe properly again! 
I promise I will blog more cause I know there's lots I've missed but it comes in drips and drabs! 


 So here's to a brighter future! Gna add pics to a separate blog as too much has happened and as I may have missed loads!  Once home and not living this daily I will prob recap! 
But this chick is back and fighting harder than you'll every believe! 

And a perfect way to end transplant week one pic I do have to share, my amazing surgeon Aron gave me a copy, I'm a very lucky girly! 




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https://www.justgiving.com/Sproglet8/