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!
Please keep donating to my page I want to smash records!