29.6.15

Coming Home...

I'm sorry guys these blogs were meant to be really close together but I just don't seem to have enough hours in the day at the moment which is a good thing it just doesn't leave a massive amount of time for blog writing.

The entire 20 days that I was in the hospital I cried once and that was when I was being put under before having my transplant. I had expected to be crying here there and everywhere due to all the new medications and all the emotions that having a transplant obviously throws at you but for some reason not me. I cried that once and that was through sheer fear and anxiety. The entire time I was there I was just happy and I had my off days when I wasn't feeling totally right but I was still happy and I definitely think that helped me. That is until the day I was due to go home. 

The day I came home I was told that transport would be there to pick me and my mum up at 11am and that is when I would be leaving. So I had been up since 4am and I was ready to leave and go I was bouncing around like some sort of rabbit on drugs. 11am came and went, then noon came and went, 1pm came and went and it got to 2pm and at this point I was beyond fed up and just about ready to strangle some-one. If I had been told it'll be any time during the day I would have been totally fine I would have been able to relax, chill out a bit but because in my mind I should have been on my way home at 11am I was a irritable cow and the longer time went on the more my mind just kept thinking "They're going to keep you here, you're never going to get home, you aren't going to see Jaydon and Spencer before they go on holiday" I was just getting really annoyed and angry and when I'm angry I cry. 

Then to top off a already rubbish day they moved a woman into the bed next to me who is "one of those people" and by that I mean one of those people who quite clearly revels in being ill. I hate those people. She was also one of those people who likes to tell you every minute detail of their story and how much iller and how much more horrific their "journey" has been than yours. I hate those people. Firstly everyones stories are different, secondly I'm not going to compete with you and try and say I'm iller or was iller. I'm not sorry that my recovery has been really smooth and this woman just seemed to make me want to feel guilty about it. She then decided to just go on and on about all of Papworth's failings in her eyes. By this point I had just had enough and so I closed the curtain (which she still preceded to talk to me through) laid down and cried for about half an hour. Of all the things and all the days for me to cry on this was not the day I thought it would be.

At 3:30 the transport eventually arrived and I got to escape I cannot tell you how pleased and elated I was to finally be leaving! I literally jumped from my bed and ran out of there after saying goodbye to everyone. I could have been sat on a plank of nails on the way home and it wouldn't have mattered because I was on my way home! 

It took about 2 and half hours which isn't that bad in the grand scheme of things and when I arrived my little nephews had put a little welcome home banner and heart balloons all around the front of the house and I had two very excited little boys waiting to see me. Jaydon had been asking since I went into to hospital whether he could go see Stacie and BB yet and the answer was always no and I couldn't really FaceTime or Skype or any of that because the wifi and signal at Papworth is just so horrific so we were just sending videos and pictures to each other a lot so I was beyond excited to see them. Jaydon just rambled away at me like no time had passed at all and Spencer was his usual self. Skyler had grown so much how does a baby grow that much in the space of 20 days I felt like I'd missed out on so much. 

It definitely felt weird being home because you have left the security of the hospital and being so far away from Papworth it's not like if there was a emergency I could just drive up the road to them. Great Western is a great hospital don't get me wrong but they could barely deal with me as a PH patient I'm not sure how they're going to deal with me as a transplant patient. Hopefully that's some way off in the distance though lol.


As always, thank-you for reading guys and chat soon
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23.6.15

Good Morning Britain...

So something I failed to mention when I was writing my previous blog was what I woke up to on my phone. I actually managed to get hold of my phone not even 2 days after my transplant and there were thousands upon thousands of notifications, I still have yet to sift through them all. I gained who knows how many twitter followers, I have hundreds of friend requests waiting to be accepted or declined on my Facebook and my "others" email folder is jammed. I have never ever experienced anything like it and to be honest I'm still extremely overwhelmed by that alone. Anyway moving off my tangent the Monday after my transplant and when I was a little less doped up and a bit more alert I posted my very first "Post transplant" photo, things went a bit mental again. People couldn't quite believe I was posting on Facebook less than 48 hours after having a Heart and Double Lung transplant. That day I started getting emails and messages and phone calls from various different press and media outlets I ignored pretty much all of them because I was 2 DAYS post transplant! I was like "Woah!!! This is too much to be dealing with!" I did however answer one phone call I don't even know why, we'll blame automatic responses for it, but it was Good Morning Britain who fair play to them were really lovely but were asking if they could come film me in a few days and I was like "woah I've only just had my transplant that's probably a little bit premature" Luckily Daniel Papworth's press guy took over and dealt with it all and I didn't get any hassle from anyone for a while afterwards as they all seemed to get the message to deal with him and not me. This however didn't seem to stop newspapers writing about me which was weird normally I know about these things and actually do a interview not just see my face appear on a newspaper without knowing about it. 

Anyway after things calmed down a bit and we kind of all knew I'd be home in the next few days Daniel arranged for Good Morning Britain to come down to Papworth and do a interview with me and my consultant Debs via a satellite call which I can honestly say was a very odd experience. They stick this thing in your ear and you can hear the studio and all the people behind the scenes and it was very hard to concentrate. I'm never going to be natural on Tv I was Miss fidget the entire time and it was quite funny they were asked not to ask ONE question and that was the exact date of my transplant and what was the first question they asked? "When exactly was it Stacie?"I was like "Oh God what do I say?" because Papworth had told me in no uncertain terms I wasn't allowed to say, it's down to confidentiality and all that stuff and also I wasn't sure I wanted the country knowing exactly when either. I mean it certainly wouldn't be hard to find out when it happened but I wasn't about to announce it on national tv. So I was like "Urmmm I'm not actually allowed to tell you....." Awkward! LOL 

I had actually been prepped with the questions the day before the interview and they had said to me "we hear you like tennis Stacie?" and I was like "yeah I love it" because I do and have always wanted to go to Wimbledon, it's on my bucket list and is something I plan on learning how to play even if badly but they kind of left it there so when they asked me about Wimbledon in the interview and like focused on it I was like okay, strange people but I was happy to go with it because I do really love tennis but I thought if anything comes out of this it probably won't be till next year because we are literally only 2 weeks away from Wimbledon and I'm sure my doctors aren't even going to let me go. So when the interview was over me and Debs burst into laughter because it was just beyond hilarious! I asked Deb though and was like "Would I actually be allowed to go to Wimbledon if I got tickets?!" and she was just like "Yeah of course!" I didn't get my hopes up and just went about my day which involved another interview with ITV news for Anglia and West Country  which was nice and was totally my physio for the day because I did a lot of walking for their shots LOL. 

 

I really enjoyed being on the show though it's always nice for them to have a follow up because I see transplant people going on news and programmes and sometimes you never see them again and you do wonder, Did thy ever get it? and it's a bit demoralising so hopefully people will have been happy to see that transplant does happen, it does work and even if you have to wait a very long time miracles do happen and sometimes just a bit of magic. 

After this interview I did actually get a few offers for Wimbledon Tickets which was beyond kind and a pair I did actually accept this was before we knew what Good Morning Britain had planned for me yesterday. So yesterday I got the surprise of my life when Good Morning Britain turned up at my house with tickets to Wimbledon and lunch with the Lawn Tennis Association, if you know me you know its hard to make me speechless or incoherent generally in any way but i was and I cannot believe how oblivious I was I honestly believed GMB had cancelled our Skype call and I was silently cursing the fact I could have had like an hour extra sleep LOL. The next thing I know there's a knock on my door and my dad's like "You HAVE to answer that Stacie!" and I just know exactly what it is, mortified is not the word! LOL. I would have dressed 1 million times better if I had known. 

Anyway the end of the story is I'm going to Wimbledon on the 7th of July and get to have a super posh lunch. I'm sending the other tickets I got back as well because I don't want them to miss out on their Wimbledon experience but the generosity of people is so overwhelming that people would do that for me. I know a lot of people that think it's a stupid thing to want to do but it's just something I love watching and have done since I was 12 and it just looks like such a amazing experience to go and be a part of and even though I've never been able to play any sports it's one that I've always appreciated and enjoyed watching even when I'm in hospital when it's on I have to find a TV to watch it on that's how bad I am LOL. 


Right another blog very soon guys I'm getting there LOL  
As always, thank-you for reading guys and chat soon
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20.6.15

The next Chapter: Post Transplant...

How do you start off a blog you've been waiting, hoping but never quite thinking you'd be able to write?

I want to shout it from the rooftops "I GOT MY TRANSPLANT!!!" but that seems obvious, but I DID, I actually went and got my transplant! 

So lets set the scene for you: It's 4:30 am on a lovely Saturday morning I have just finished a evening of revising, probably the only decent bit of revising I had done for a week if I'm being completely honest with you all, I decide it's probably time for bed I shut my eyes and the next thing I know it's exactly 5:00am and a weird mobile number is ringing me. I'm going to let you process that a mobile number. I miss it because I think "Oh it's just a mobile number" next thing I know is I hear the ping that tells me I have a voicemail and then in my brain I just know what it is. I listen to the voicemail and it says "Hi it's Helen from Papworth, we have a match Stacie, you need to ring me back as soon as possible please" Well we can all imagine my thought process at this point it involved a lot of swearing. I ring her back and she tells me I have 30 minutes probably less to get ready for the ambulance and I Have to be there by 8am. 

Okay so in all my previous false alarms I have never been told I have to be there by a certain time they just say they're sending a car and I get there when I get there. I shout to my mum that I have just had my transplant call and she gets mad at me because she's just about to start washing or ironing or something and then what does she decide to do? Jump in the shower :D It was really funny. I do my usual make sure I've got all my stuff meds in case it doesn't happen phone, kindle that kind of stuff that I know I'm going to want when we're waiting. I call Bernice who doesn't answer, Kath who does, gina who doesn't and text various other people message people and prepare my Facebook status. 

Whilst on the way I think I called Bernice about a million times and eventually I got hold of her I also posted my Facebook status which read: 

"TRANSPLANT ANNOUNCEMENT
Okay... so... I'm kind of on my way to Papworth. In the sort of way that I potentially may be getting my transplant. We are going to be calm and rational people though, okay? We're going to deal with this like it's a false alarm. So no getting our hopes up okay? Just keep those fingers, toes and everything crossed and more importantly just hope that I don't have to go 24hours without eating like last time that was a form of torture I'm sure "

Now me and mum could feel this one was different, we were being blue lighted there which hadn't really happened before and I could just feel it but I refused to get peoples hopes up especially my own. So I was just saying to myself it's another false alarm and mum was going "Well at least this is you false alarm for the year" LOL, only mother haha. I was texting people because I had forgotten the nausea inducing anxiety riddled person I become when these things happen and was basically saying how fucking petrified I was. 

When we got to the hospital it was the usual, bloods, ECG, lots of paperwork and the waiting didn't even seem that long, they told us we wouldn't hear anything till about noon and in hospital speak that means about 1 or 1:30 next thing I know it's about 1:35 and David my transplant co-ordinator comes in with a wheelchair and says 

"we're going" 
"EXCUSE ME?! WHAT?! To theatre?!" 
"Yep time to go..."
"Do I have time to ring anyone?" 
"Nope." 

Luckily at this point David had lost a piece of paperwork and it literally gave me one minute to ring Bernice and Kath both calls lasted exactly 26 seconds each and I basically just yelled down the phone 

"It's happening, it's happening, it's happening" and "I love you."

I knew mum would ring everyone else that needed to know and Candice would let everybody else know but Me, Bernice and Kath have been on a very long journey together and I felt like I had to be the one to tell them. Next thing I know I'm in a wheelchair saying goodbye to my mum at the doors to theatre where she can't go. I don't cry here but I'm petrified, the most scared I have ever been in my entire life and I'm doing it by myself with just a man by my side that I don't know that well. I lay on the table I grip onto David's hand for dear life (I'm later told that I nearly broke his hand lol) I cry my eyes out and tell him "You need to talk to my mum because she's by herself" and that's the last thing I remember. 

So the Surgery.... I obviously haven't got much of a clue as to what happened whilst I was under so can only relay the information I was told. My surgery only lasted around 6 to 6 and half hours which is very, very good. I'm told my lungs were in much worse condition than originally anticipated and that therefore meant they couldn't bring the heart and lungs out in a block like they normally like to and basically pulled my lungs out in bits, this freaks me out a bit because how much longer would they have lasted?! My heart however was a bit better than expected but still obviously in need of a transplant. The surgery went smoothly and I went to ITU/Critical care. I was kind of a star patient I managed to come off of everything really smoothly, I don't remember a thing the first thing I remember is eating jelly and ice-cream and drinking coke which apparently I was lucid enough to request diet coke as we all know full fat coke is gross! I'm led to believe this was Sunday morning. I remember my mum and sister saying "Stacie" a lot because they were trying to keep me awake but honestly guys I think I must have the most boring transplant story in history. I had no hallucinations no horror stories to tell everything just went really smoothly. 

less than 48 hours after my transplant.
I remember being moved to the less critical part of critical care where things became a little less hazy, I got to eat strawberries which were amazing! I got to stand and walk which was much easier than I had anticipated and I suspect that's because it had been less than 24 hours since I went down. 

Something I kind of forgot to mention to people was that I have always recovered well from surgeries, always, and I suppose I never mentioned it because transplant is such a massive operation I thought I'd be down for weeks but I suppose my body was like "Nope, you aren't staying down for long Stacie!" I was on a normal ward within 40 hours of having my transplant. 

I would go through every milestone with you guys but it was all so quick. I had 3 of my drains removed pretty much immediately 1 left in just to make sure no more gunk wanted to come out of me. I had my Catheter removed within 24 hours of that due to my stubbornness and refusing to use a commode and I was up and walking unaided within that time too because I just didn't really have the patience to wait for nurses. One thing I must say is Pilates totally worked and working on my core meant I could sit up without having to use my hands and arms which I really think helped me. 

My time has kind of become blurred but I know whilst I was on that ward I saw Carla who was kind enough to come visit me, I felt really bad because I missed her Birthday party as it landed on the day my call happened. My doctors told me that Bernice wasn't allowed to see me for at least 2 months due to a certain bug that can be passed between our lungs. I cannot tell you how furious that has made us both! But we're being good and abiding by the rules. Later on the Tuesday I think it was I got moved to a side room because I was potentially "infectious" and this is where I remained for 2 and a bit weeks. 

I honestly feel like I'm telling you the most boring story because I have had the smoothest recovery and I'm still just waiting for something to happen because I can't quite believe it. I was running around the ward within days being told off for not wearing slippers even though we all know I'm more unstable in slippers than actually on my own feet. I was eating really well and I've literally had no side affects to any of the drugs except this weird heat thing in my hands which is really hard to describe LOL.

Lots and lots of people messaged me asking me if I felt different and the answer was yes and no because I did in the sense that I just wasn't in pain any more not the crippling pain I was in before transplant. On a day to day basis I ran at a pain scale of 8/9 everyday and that's the thing with chronic pain, you learn to live with it because if you don't it'll take you down and I refused for it ever to do that but when I woke up it just wasn't there anymore so when people found out I was off morphine within hours of having my transplant and just on paracetamol they didn't quite believe it but it's because the pain I was in was absolutely nothing compared to the pain I had been in for years. If anything it was a relief to wake up and not be in that pain anymore. Breathing was hard and I could just tell the bottom parts of them were gunky but I was more than willing to work on it. 

I just kept going from strength to strength and I have enjoyed every moment of this experience. I think I was made for transplant either that or I was just so prepared and ready for it to happen that whatever happened I was ready. Being so ill before transplant it's like my body just welcomed the relief of new organs and it's like it's breathing a massive sigh of relief that it doesn't have to carry that burden anymore. 

I had so many visitors whilst I was there and I'm so grateful to them all for coming to see me they kept me quite sane where I could possibly have got lonely and bored. My mother was an absolute saint she stayed with me every single day I was there and kept me company, brought me all the Ribena I could ask for and kept me entertained with stories about other patients that she had found out from the people she was staying with. Mum was like a fellow inmate just without the bonus of having a new lease on life that I had currently received I don't know how she managed the 20 days. That's why I love her though she'd do anything just to keep a smile on my face :). 

I made friends with literally everyone, the nurses, the matrons, the cook people, the physios, the HCA's especially one particular HCA called Shannon who was just the loveliest person ever and did my hair when it was really gross and I still wasn't allowed a bath, she made me feel a little bit more human. Seeing my transplant doctors every morning was a absolute joy it was just like chatting with friends I think it took them a few days to get used to my chipper self in the mornings but they got there in the end. 

I would have been allowed out a week earlier than I did but because I live so far away we thought whats a few extra days in the grand scheme of things and driving back for a biopsy after 2 days just didn't seem like it would be worth it. I had my biopsy though and it showed no rejection and that meant I could officially go home so after 20 days I was officially allowed home. 

I have to say thank-you to my older sister Candice for keeping everyone informed over the past few weeks because I know she got a overwhelming amount of messages that I'm only just starting to sift through. My mum as well for literally staying by my side the ENTIRE time I can only imagine how stressed she was the whole time. 

I think the biggest thank-you I have to say though is to my donor, they'll never know what they've done for me and the only thing I can ever say is thank-you to them and their family for agreeing to donate their organs. I wish I could say more and for it to really express how thankful and grateful I am but how do you do that?! I think the only way is to try and not disappoint them and live my life to it's now full and unending potential. I just really hope I don't let anyone down.  

There is going to be a few more blogposts within the next few days guys but at the moment my concentration skills suck. It's the meds. But there will be more to fill in the gaps like coming home and me going on Good Morning Britain and other exciting things that are happening! So stay tuned! 

As always, thank-you for reading guys and chat soon
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