26.2.15

Unicorn...

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Did you know that back in the day and by "the day" I mean the 90's, Heart and Lung transplants were in fact the norm? No probably not unless of course you have gone through the process of being assessed for a heart and double lung transplant, it is something they feel the need to tell you and continue to tell you every pre-transplant clinic you see them at like it's new information they're giving you and not something they've told you every 3 months for the past 3 years. I politely nod though although my responses to the information have definitely gotten shorter in that time. The reason though? Well back in the 90's double lung transplants weren't as easy as they are nowadays, easy is probably the wrong word, the success rate for double lungs transplants was not great is what I'm trying to say. So if someone needed a double lung transplant they would more than likely do a heart and lung transplant because essentially it is an easier transplant to perform and sometimes they even did domino transplants where the person waiting for lungs would still have a a good heart and there was no point in it going to waste so they would be able to transplant their perfectly good heart to someone waiting for a heart transplant. Amazing right?! However fewer deaths actually are occurring nowadays and that has a lot to do with things like seat belts, increased health awareness and just generally double lung transplants becoming common practise. They would much rather save 2 people than 1 which I understand to an extent.  

Nowadays we are very few and far between. If they can avoid you needing a heart and lung transplant they definitely will because they know how hard it is to get them nowadays. That is why they tried to find a way around the various heart issues I have. No luck though. 

Why am I rambling on about all this though? I'm just feeling a bit alone at the moment that's all. Very few people that I know of can really get it. I made a lot of friends when I was initially put on the list, quite a few whom I would call some of my closest friends the thing though is several have tragically died or gone on to get their transplants. I remember having conversations with people when I was about 6 months into the list I remember saying that I thought I was either going to not have to wait very long at all or have to wait a very long time, at the time I considered 2 years to be a ridiculously long time which it is but that's how long I naively thought I was going to have to wait if I had to wait "a long time." I look back on 21 year old me and feel sorry for her because she was so full of hope that it would happen quickly I mean why would it take 11 months to get on the list an not happen quickly right?! Unfortunately something I have always known is that I am not a lucky person, I may have just about used up all my luck in that I haven't done this waiting thing in complete agony 24/7 there's probably only so much luck somebody can get right?!

I don't seek out or actively speak to people who have been put on the list anymore, some do find me and I do talk to them and love talking to them and I definitely wouldn't be rude and ignore them but I have to prepare myself for the emotional blow I will inevitably receive when they get their transplant before I do whether they've been waiting a week, a month or a year it's what happens that's why most of my transplant friends are either post transplant or have been waiting quite sometime themselves. 

Probably not a good thing for me to do but I asked on one of my transplant groups this evening whether people knew of anyone waiting for both heart and lungs or whether they knew of any happening lately because I like to torture myself that way and morbid curiosity always wins out. Apparently so far between April 2014/2015 there has been ONE Heart and Lung transplant, that is just ridiculous especially when you think in 13/14 there were eight! Maybe they are over compensating by actively not doing them? I don't know because eight is a lot, or not a lot but a lot when you think previous years there was 3 then 5 then 3, eight is definitely way above the norm. If you have a morbid curiosity about these things like I do here's the link to the NHSBT statistic Pdf that tells you all you want to know about transplants since 2010. 

If you ever wanted to see a Unicorn find someone who's had a heart and Lung transplant in the past 15 years, that's probably as close as you're going to get! 

As always, thank-you for reading guys and chat soon
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22.2.15

The normal bits...

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I feel like lately all I've been doing is informing you of the exciting goings on and while that is you know... exciting I haven't been telling you the boring stuff. Well not boring just normal stuff, a meal with the family doesn't seem to quite compare to being on TV and being a part of a campaign does it? 

The past few days I feel like I've been non-stop. IT was my sisters Birthday on Friday, she turned 26 which is mental she's on the wrong side of her 20's now but that scares me because Me and Meg turn 26 next year and we aren't even 25 yet. Does that scare anyone else? Any way I brought Candy a glass vase which I put some Bath bombs from Lush in because she wanted a vase for her Bathroom and bath bombs not for her bath but to make it smell nice, if you could see me I'm rolling my eyes LOL. The boys opened all her presents for her, bless them, because they obviously think all presents are theirs too, we then went to Lunch in a local pub which was nice. 

Later that evening I went to dinner with Gina and Pegster. I managed to go 1 hour and 30 minutes without my oxygen which I'm so proud of myself for. My chest hurt but it was worth it. I think I timed it just right, so I didn't wear it during Dinner and then when we left to go to the Cinema I put it on and I seemed to get the balance just right I think. We went to see "50 shades of Grey," I have never read the books, shock horror, and nor will I be after seeing the movie. I just don't think that type of movie is aimed at someone like me. It was awkward interaction throughout the movie between both the leads, I couldn't stop staring at the fact the guy, Christian? had one eye bigger than the other, it really annoyed me LOL and the woman and her friend were clearly way to old for the parts they were playing. Every-time the guy and the girl interacted it was just awkward, really awkward! I just found it creepy as well, it felt like a parent and child. Then there was one line where they are "sorting out the contract" and the entire cinema just bust into laughter. I'm not sure that's what they were going for. Then when it finished I could just hear the sighs of relief when it was over. Yeah, I definitely wouldn't recommend that movie to anyone. It was a good laugh though for me, meg and gina lol. 

Friday was also the day that I have been waiting 34months on the list. I'm not going to go into massive detail because when I think about it it just annoys me and I start to get mad about it so best just to say "Yes I've been deserted on the list for 34months now, unlikely to change in the near future so why bother getting upset about it?" So I'm just going to silently brood about it and complain to Papworth on the 13th lol.  

Saturday I basically slept. That up there ^^^ may not seem like a lot but when I got up at 8am and didn't get in till 11:30pm it took it's toll so sleeping was my friend. I got my oxygen masks through as well which I'm so excited about. Currently my nose is suffering because of my oxygen. I usually wear nasal cannulars, which I really do prefer but sometimes my nose just needs a bit of a break. I'm having about a minimum of 4 nosebleeds a day at the moment and it's definitely from the battering my nose is getting from my oxygen. The masks should just take the pressure off and give my nose time to heal a little. I got up at 4pm though and went to dinner with my Mum. Candice, Warren and the nephews which was Chinese! Yummy! I do enjoy a good Chinese!

I also have given up Chocolate for lent, which I think is crazy! It's not for any religious reasons just to see if I can do it :). Today is Day 5 it's not too hard I just forget sometimes. Yesterday I may have accidentally had 2 mouthfuls of a Ripple McFlurry (I know classy!) before I realised what I was doing, it really doesn't count though because it was 95% ice-cream so I'm not counting it! I would join the people doing the Dechox for the British heart foundation which is basically people giving up chocolate through March but I won't do it because people would need to sponsor you and 1. I'm pretty sure no-one would sponsor me and 2. Even if people did I wouldn't want to disappoint them because I'm not sure I'm going to last till Easter but at least with lent I'm only disappointing myself LOL. 

Today is my sisters Baby Shower as she is due to pop in the very near future and her friend Sam suggested we do it because this baby will be Candy's last. I'll be doing an entirely separate blogpost on that though so you have that to look forward to :) Have a good day my lovelies!

As always, thank-you for reading guys and chat soon
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19.2.15

Pretty presents....

You know that present I got? Well I want to share a few of the bits that were in with you guys. I'm not going to share all of the stuff because otherwise that would make for a very long post. Also be aware that this is more of a haul and I have yet to actually use these products but I have chosen some of the ones that I am most excited to use. I am very excited! 









OPI Nail Laquer || Brazil collection || Where Did Suzi's Man-go? || AmazON...AmazOFF || Kiss Me I'm Brazilian || Next Stop... The Bikini Zone 
I am very excited for these they are all colours I would use because I use any and all colour when it comes to Nail varnish, I'm not fussy. I am especially looking forward to the AmazON...AmazOFF because that is just the most beautiful deep green and I just love it! 

Ciaté Corrupted Nail Manicure 
This I actually just thought were just normal nail varnishes even though their box was super cool. What they do is you paint the colour on as you would normally and then you prickle the neon glitter on it while it is wet and if you're in a neon room or you know a dark room type thing they become neon and light up. I'm really excited to try these out! 

URBAN DECAY || b6 Vitamin infused complexion prep spray || all nighter Make-up setting spray|| Supercurl Curling Mascara 
I have heard amazing things about urban decay prep and setting sprays and am really looking forward to trying them to see if they actually do what they are meant to. I'm not a massive fan of powder so I'm really looking forward to seeing if the setting spray actually works. The mascara is also a really cute mini which will definitely be going in my handbag make-up bag :) 

URBAN DECAY || 24/7 Glide on pencil || Deep end || Scorch 
These I already know I'm absolutely going to love!! I drew them on my hand and the colours are beautiful and they felt really lovely as well. The colours though are really bright and vibrant and I cannot wait to use them!! especially the blue how amazing will that look?!

URBAN DECAY EYESHADOWS || Glitter Rock || Cosmic || Diamond Dog || Zodiac
So the shadow in the top left hand side is just referred to as a "neutral" so I have no idea what that is called but all these shades are really lovely shimmery shades. I actually really only own a tonne of matte colours because I like to stick to safe colours but I'm really looking forward to using these and seeing how they turn out because they are so, so beautiful. 

NARS || Deep Throat
I cannot tell you how excited I am for this one because I have wanted this blusher for so long! But you know when you just can't justify buying something but now I finally have it!!! It's such a beautiful colour it has a slight shimmer to it which is just gorgeous! 

NAKED || Streak
This is beautiful coral peach colour which I think is perfect for spring coming up and I'm likely to wearing this a lot through March to September I didn't even know Naked did lip glosses!

ESTEE LAUDER || Mod Poppy Shimmer
I would say this is more of a Stacie colour and is pretty berry tonne which has a really gorgeous shimmer to it and will most likely get a lot of wear on the days when I feel like my face needs a bit of brightening up :) 
 
                        
As always, thank-you for reading guys and chat soon
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15.2.15

An Amazing Week...

This week has been crazy! So, so crazy! Where to start really? I don't even know.
 
So I suppose Monday would be the place to start. The "Give your heart this Valentines" video went live along with the website giveyourheart.co.uk which was amazing and I loved that I got to take part in it even if I was mentally cringing at the fact all my PH friends, Transplant friends, Family and Friends were seeing it. I kept hearing it and had to keep my eyes and ears shut off for a while. It's not that the video was bad, it's not! It was just I see so many flaws in myself that I can't watch myself on screen but everyone seemed to like it and I was satisfied that everyone within my circle of people seemed to enjoy it. I honestly didn't expect many more people outside of our like "community" if you will to see it but they did LOL. 
 
Later that day it was shared on several Facebook pages one in particular got a lot of views at the moment it's at about 515,000 which is insane. There was a few negative comments and like anything the negative ones tend to stand out way more than the positives but I just ignored them. They were mainly about my appearance and they weren't anything I hadn't already said to myself about a million times before although I probably haven't ever called myself a troll LOL. Mainly the feedback was really positive though. 
 
On the Tuesday I got a phone call asking me if I was free to go on Good Morning Britain on Thursday morning because they were interested in running the story and I just had to make sure someone could come with me because I can't really go places by myself so much anymore just in case something happens to me. Megan managed to get Wednesday afternoon off and Thursday off too and that meant we could go. Unlucky for Megan that meant they wanted her on the show when they found out she was going and she refused for the majority of the trip but then we got there and she was fine about it LOL. We stayed in a really lovely hotel and the bed was actually super comfortable which I was surprised with because I never find hotel beds comfortable unfortunately I didn't sleep at all I drifted off between midnight and 1am but then Megan started sleep talking and I was awake! 
 
Thursday morning we arrived at ITV studios at about 7:15am and we got to talk to the producer and some of the other lovely ladies who work at itv. I got to meet Vicky who was there on behalf of Dare and to look after me and Meg and she was so lovely! I had my make-up done and once again it was "TV" make-up something you can only understand if you ever had it but I already had foundation on because I was worried they may not have time to do my make-up but oh no that didn't matter they were perfectly happy to plaster a tonne more on top you honestly feel like if you smile you face will crack that much foundation was on my face LOL. 
 
Me and Meg got to meet Ben Shephard and Susanna Reid and they were Super lovely and Ben requested a photo as I hadn't brought my phone in with me as it was going a bit crazy with notifications and I was afraid it would go off. We did though and I love the photo! I think the interview went well though I decided after that I should have flattened the right side of my hair down and I really shouldn't have worn a baggy cardigan as it made me look chunky but I can't go back in time haha.
 
Friday I did a interview with BBC Radio Wiltshire which was really cool I got to go to their radio station and do it live which I haven't done since I was 16 you can clearly hear how out of breath I am on it but I actually really enjoyed that interview. I also did a interview with the Swindon advertiser when I got home and it was supposed to go out yesterday but didn't for some reason so I'm guessing it's happening Monday or something because the lady did mention doing a feature so that would make sense even if it is after Valentines day lol! 
 
Finally yesterday Dare the people who made the video sent me the most wonderful gift. A massive box turned up at my house addressed to me and full of just so much stuff I didn't quite understand. It was full of perfume, creams, make-up, nail varnishes, Naked, Urban Decay, Benefit, Estee Lauder, Nars there was a lot of stuff I couldn't quite believe my eyes There was even two toys for my cats, how cute is that?! And they even sent Megan a present for looking after them on filming day and she was delighted also. I keep saying thank-you but I don't think that quite covers how happy and thankful I am with this present because it was just so unexpected. I don't feel like I even did anything that deserved a present, I just felt like I was doing what I should do. I'm a great believer in me earning my transplant by doing anything I can to raise awareness for PH and Organ Donation so it was just something I had to do. 
 
Here are some photos and at the end I will stick the links to my GMB appearance and radio interview and other links that the video appeared on :) 
 
  
 
Links from this week:- 
-  Brand Republic
Little Black Book Online
Campaign Live
Upworthy
More about advertising
- The Debrief 
Good Morning Britain Live interview
BBC Radio Wiltshire Live interview

As always, thank-you for reading guys and chat soon
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10.2.15

Filming experience...

Hey Guys, 

So now you've seen my little film thing "Give your heart this Valentines" I can now tell you about my filming experience. Now we all know I've done news pieces and live interviews and that type of thing, well this experience was different because it involved a producer, a director, a agency, camera man, camera mans assistant guys, sound man, light men ect. So although what you saw probably doesn't seem very long or like it would need that many people in actual fact a team of about 15 people helped make it happen on the day and that's not including the people who edit it and all of that stuff afterwards.  

When asked if I would do it although I have all my superficial insecurities about myself I said "of course, yes!" because I always want to help promote organ donation in anyway I can. I can't do too much at the moment I can't raise money or do walks, or runs, or climb mountains to help but this was something I could do. It required a bit of acting on my part but it was still something I could do so I was more than willing to take part and it meant I wasn't just having another monotonous day, it was something different.

I got to meet the Director, Producer and Art Director first who were all lovely! I didn't see the producer much because he was downstairs for most of the day but The Art Director Antonia was lovely she "dressed my room" basically made it how they wanted it to look, so like changing my duvet cover because white doesn't come up well on camera, arranging pillows, adding lights and little nic-nacs to go with the theme etc. The Director was a guy called James Strong who has directed a bunch of stuff, Downtown Abbey, Doctor Who, Broadchurch etc. He was lovely and thank heaven didn't expect me to be a actress LOL 

A lot of the day was mainly spent with them setting up my room while I was getting my hair and make-up done, luckily they thought my hair was fine natural so win for my hair. Then while I was having that done I had a man kindly ask me if they could 'remove my bedroom door' I was just like "Oookay... so long as you put it back LOL," they did. Their cameras were really large and had to go in my doorway so the door was just getting in their way. They also had to put lighting outside of my house shining through my window because they couldn't have the lighting change whilst we were shooting and re shooting. I am pretty sure anybody who walked past my house that day would have thought someone had been murdered inside with the amount of lights and vans and cars outside of it. 

A lot of stuff got moved from my room that day and I don't think there was one room that didn't have at least 2 people in at a time. So we filmed the first bit and I was very nervous and I definitely think you can tell but we had to make it look like I was using a webcam when in actual fact there was a really posh camera in front of my face and we just had to keep shooting a re-shooting because thats what they do and because they weren't loosing money on having to be in my house they could shoot it as many times as they wanted. We then moved on to the bit where they zoom out and I turn and that took a lot of re-setting up because they were using a much bigger camera and were using different angles so had to reposition everything so that it's continuity wasn't interrupted. so that probably took about another hour to do. I got to chat to the camera guys who were lovely and my make-up artist who was so lovely too. Megan was downstairs with the agency ladies, Chloe, Jessica and another one whose name escapes me [they were watching it all on monitors down there] and I kept forgetting I had a mic on (or my electrical garter as I kept calling it, it was around my thigh) and she kept coming upstairs saying "we can hear everything you're saying you know?" apparently people didn't need to know about my make-up regimes, or the fact that I have enough DVD's to fill a rental store, or Matt and James ruining the movies I wanted to see for me LOL. Apparently it's hilarious to listen in on peoples conversations or at least Megan enjoyed it. 

After everything was set up to do the turn scene where you can see my line and oxygen and the heart monitor we filmed it about a million times and it developed as we went along and they brought James and Alana into it to which I think made me more comfortable with it. Then Matt and his boys changed cameras and we did 'a interview' bit which I don't know what they're doing with but they asked you know the normal questions, How long have you been waiting? What do you want to do after? Do you have a boyfriend? etc. etc. and then finally zoom in shots of things which I also don't know what they're doing with. 

It was such a fun day though and they were so lovely to me and I'm pleased I did it, even if I can't watch it again because I just cringe at how big I think I look and my wonky teeth and my high pitched voice. I still enjoyed it immensely

Here are some photos that people were kind of enough to let me take through the day :-) 

Me and Alana, doing my make-up 
I had to get a shot with the clapperboard :-)
The lovely camera-men 
James
Megsey pretending to be a camera lady lol 
The people who were in my room the majority of the day lol 

The lovely ladies from Dare, Chloe and Jessica. They were SO nice!!!
As always, thank-you for reading guys and chat soon
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9.2.15

Give your heart this Valentines...



Hey guys, So here it is the thing I filmed!! I honestly have only watched it twice because I just cannot watch myself on film or hear my voice because all I see and hear is wonky teeth, fat face, horrible high pitched weird voice. Saying that though I have watched it and really like the way it turned out even if I did cringe the entire way through it. 

So the Campaign itself is called, as you already probably guessed, "Give your heart this Valentines". In the video you see me describing what you think would be the type of man I would want for Valentines day when in actual fact what I'm describing is a heart, because I need a heart, get it? 

If you have been reading Life is Worth the Fight for any length of time you will know what getting my transplant means to me, if at all possible it seems like it means more the longer that time goes on. In the past 6 months I have found myself getting weaker and weaker finding it very hard to do the simplest of tasks that once upon a time were easy. I have now become reliant on oxygen and can barely go an hour without it. I find that even going out for short amounts of time even with oxygen exhausts me to the point where I have to spend the remainder of the day in bed, although that being said I refuse to do the wheelchair thing unless it's for a really long day out. I just want to have that bit of normalcy back in my life to be able to walk up the road without having to stop or get out of breath would mean more than you know. To be able to bend over and pick something up without then having to spend 5 minutes trying to get my breath back would be amazing and to simply be able to talk without getting out of breath would be awesome!

I'm not here to say to you all "you must be donors" because it is a personal decision and one that I respect. I just ask people to ask themselves would they take an organ in my situation? Or if a loved one was in my situation? If the answer to that question is yes I personally believe that anyone willing to take an organ should also be willing to give an organ. I know that if I die any organs that can be of use will be used because I want to help at least one person if I die and hopefully that will be possible even with all the medications I am on. It is a gift and it would be the most amazing gift you could ever give, if I get my transplant they will be giving me a life I have never known and I will certainly try to live it for the both of us.  

Alongside the campaign a website has been set up www.giveyourheart.co.uk  which you can get signed up through and you can get really cool Valentines Day e-cards that you can send via Facebook, Twitter, Google + and even download and actually print off and send if you felt so inclined. I don't have a significant other so instead I am sending my Valentines Day card to all of you guys, those of you who have supported me throughout this entire journey be that for the past week or the past 3 years. You can send it to whom ever you like friends or family just to let them know you love them this Valentines even though you obviously should be doing that all year round it's just a great time to remind them.

I really hope lots of you decide you would like to sign up and metaphorically give your heart this Valentines and if you've already signed up you can at least get some very cool and unique Valentines cards. No matter what your decision whether you would like your organs to be used or whether you wouldn't please at the very least let your nearest and dearest know what it is you want, it would make a very tough time a tiny bit easier for them in the unlikely event something happened. 


As always, thank-you for reading guys and chat soon
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5.2.15

Magique CC cream...


Hey guys!!! If you are a frequent reader of mine and read all my posts including my make-up posts you will know I like to stick to what I know when it comes to foundation, I'm usually a strictly Clinique super balanced foundation kind of girl and that is it. However last week when I did my filming I had the loveliest make-up artist do my hair and makeup and we were having a good old chin-wag as you do and I was having a moan about how red my face can be. The meds I am on unfortunately enlarge blood vessels and make my face very red, it's something I am extremely self conscience about and if I know I am going to be seen by people like doctors, friends etc. I will go out of my way to make sure I apply at the very least my foundation just to take the redness down. 

The lovely Alana recommended this product to me Loreal Paris Nude Magique CC cream. I fell in love upon first application. The first thing you must know is it is green... yes green. It is a very thin consistency much like a BB cream and is really easy to apply, I apply it with my fingers it is that easy. Once it is on it will stay green for maybe a minute and it adjusts to your natural skin tone and just takes down the redness. 

The thing is with me I don't actually have bad skin so there's really no need for the heavy foundation that I use, I am just so self conscience of how red my face is that I feel like it's necessary to do. I mean it's not a complete miracle there is still some redness but not nearly as much as there was. It's good for those days where all I'm doing is going for a blood test or a gp appointment, it tones down the redness dramatically for me, which is awesome. 

So if you only have slight redness on your face and it gets on your nerves but you don't want to be applying heavy duty foundation to cover it I definitely recommend this I have found it really useful in the week that I have been using it and can already tell that I love it which is saying something for me.    

As always, thank-you for reading guys and chat soon 
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1.2.15

Instagram Diary...

instagram --> @staciep90
1. A positive little quote to start off the year 2. I was having a cosy evening with hot chocolate  
3. 5 years flashback to actual snow 4. A good old pizza hut  5. Being wired up to the ying yang 
6. Waiting 1000 days on the transplant list 7. My beautiful Alfred 
8. My cats getting cosy on the new furniture  9. Becoming a little more wire free 
10. A soft blanket of snow 11. Having a cosy blanket sofa day 12. Up and ready for Hammersmith 
13. After completing my exercise test and various others 14. A ghost ward 
15. My beautiful Alfred again 16. Me in actual proper clothing and not just pj's 
17. Wedding Dress shopping with peggy 18. New fresh hair 19. Late Christmas present 
20. Me and Alana while she was doing my makeup and hair before filming
21. Me and a Clapperboard 22. My "I want to do something" blog 
23. Me actually owning a colouring book
 
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