Thursday, 2 July 2015

Adjusting...


Hello my beautiful people. 

So today is the first day since I had my transplant that I've had an extended period of time by myself and I'm loving it. I feel like for the past 4 and bit weeks I've just been surrounded by people and I'm a people person I am and I enjoy being with people but I do like time to myself just to chill out and do things I enjoy doing without having to worry about anybody else. Also it's nice not to have to answer the question "How are you doing?" "Are you okay?" and all it's other various different forms of the same questions about 20 times a day. I know it's people just caring and worrying but sometimes I just want to be like Shush!

I've been home a while now and I've had 2 clinic appointments since I've been home which is crazy because everything just seems to be going so fast. There's been lots of adjustments since being home. I've got my head around my medications now I think. I'm currently taking them at 6am, 8am, 10am, noon, 2pm, 6pm and 10pm which isn't bad in the grand scheme of things and that will start to become less when I come off of the Nebulisers that I am doing and a few others go away after a certain amount of months so that's all good. The Nebulisers are a particular pet peeve of mine though. They tie me to the house because I have to do them at 6am, 2pm and 10pm and because it's a machine I can't take it with me so I think once they're finished I'll be able to get out and about a lot more. The pills side of it hasn't really been too much of a adjustment though because there really isn't that many more than what I was taking pre-transplant which has been a happy surprise.

I think the exercise is more of an adjustment for me because while I wait for the cardiac rehab people to get a hold of me I'm having to force myself to get up and do things which isn't that hard anymore but I have days like today for instance where I would quite happily just sit and watch Wimbledon all day. Food has now become the devil! Not that it wasn't before but now I no longer have a barrier that stops me being able to eat. Before transplant when I ate I would get out of breath and I physically couldn't eat anymore because my lungs just wouldn't let me so I had that barrier to be able to stop, the problem? Well with these brand spanking new lungs that barrier is gone so I can eat way more than before. It's annoying I actually have to have will power to stop now :-/

CHOCOLATE! Now the reason this is in capitals is because I no longer seem to like it.... Yes you read that correctly. I've been trying it every single bloody day since about the first week I had my transplant and it tastes rank! Everyday I get the same disappointment and let down of tasting chocolate that previously tasted amazing and at the moment just doesn't. The only way to describe the taste is that it tastes like it's gone off or something and it's very annoying. I love chocolate and I cannot believe it's the one food I seem to have gone off since my transplant. I mean it's probably good in the whole grand scheme of things and my weight will appreciate it but I mean why chocolate?! Of all the foods in all the world to go off of why chocolate?! I'm hoping it's just one of the drugs or the Nystan that I have to put on my tongue after ever meal which will stop eventually. I'm persevering though and will continue to try it everyday till it tastes right lol.

I thought I was going to be really on edge while I was home and I definitely was the first few days but a friend actually said to me the worst that would probably happen is I'd get rejection and that would feel like flu so that kind of made me relax a bit and I've just been really enjoying being home and it's also kind of a security blanket knowing that you're never that far away from a clinic appointment in these early stages so I know if something doesn't feel quite right there's always someone on the end of the phone or I have a clinic appointment in the next few days. Not that I've needed that so far but it's nice to know :D.  

As always, thank-you for reading guys and chat soon
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Monday, 29 June 2015

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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Tuesday, 23 June 2015

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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