30.11.15

6 months...


SIX months ago today my life restarted. Six months ago today I was woken up at 5am to the news that I was about to be given a life that I had never had. Six months ago today I was wheeled to theatre on my own where I cried as they put me to sleep wondering if I would ever open my eyes again. I was given a new set of heart and lungs to replace my old failing and decaying ones. I was given a whole new life. 

I can't believe it's been 6 months, there's a part of me that feels like I had my transplant so long ago that 6 months feels like no time at all to the way I feel but then May and June just feel like they were last week sometimes, it's strange for me. It's weird because one day I was dying and the next I wasn't, I went to sleep in pain and ill and I woke up and all of that had been erased. My entire life up until that point was for that very moment, everything that I went through all the pain, all the anxiety, all the waiting, all the medication, everything was so that I could get to that point and get the life that I never had. The thing is, it was worth it. If I went through all of that to only get 6 months or a year or however long, it was worth it because the past 6 months I haven't had any pain, my life may not be miraculously different yet but the simple fact that I am no longer in pain makes all of it worth it. The pain was the worst part of it all. The waiting was terrible and torturous but more of a mental torture but the pain was awful it never stopped, there was no rest from it and my only wish was to die painlessly and it looked at times like I was never going to get that wish. 

Then it happened. I didn't believe until I was on that table being put to sleep, I refused to believe it until that point like so many others do because my 3 false alarms had taught me that it's not guaranteed until the organs are physically in your chest but it happened. 

I've adapted very well since my transplant, I've had very few problems *touch wood.* Sometimes it feel like my body was prepared for it and knew that, that was what needed to happen for us to feel any kind okay again. I like to think my body welcomed the organs with open arms. I get asked a lot whenever I get interviewed or by people in general "What does it feel like to have someone else's organs inside of you?" and I personally think this has a lot more intrigue when it comes to heart and lungs because they are really I suppose the only organs that you can feel or think about, if you know what I mean? Lungs, you are physically breathing all the time it's something that you're kind of aware of and your heart is beating all the time and something I especially feel a lot because I'm very aware of it. Whereas I wouldn't say you'd particularly notice the jobs you're other organs are doing. Or you know you're a normal person who just doesn't think about their organs at all like you're supposed to. But I suppose the answer is it doesn't feel like anything. I'm still very aware of both my heart and lungs but they don't feel like somebody else's they feel like mine just different to what they were. Personally as well I don't think people who get transplants should have to view them as somebody else's because that would be very mentally draining I think, to go about your life with a constant feeling that a part of your body is not your own sounds awful to me. 

I find it very hard to be one of those people who verbalises their thanks for their donor every day. I see people do it everyday and wish I could be one of those people but I just can't. I don't go a day where I don't think about her at some point but saying thank-you just seems so stupid in comparison to what she did. Thank-you just seems so small and so insignificant compared to this amazing thing that she did and it makes me so incredibly sad that she will never know what she did, she will never know what she did for me and my family and my friends, for all of the people that I love. I was for lack of a better term a living corpse for the 6 months before I got my call and and this woman that I don't know and never will know gave me my life back, well not even back she gave me A life, and I will never be able to say thank-you and that makes me very sad. 

The past six months have been amazing though, I've done so many things that I never thought I'd be able to do again I've walked up a road without stopping, same with stairs. I've walked on a beach, in fact several beaches. I've had a bath up to my neck unencumbered by a piece of plastic coming out of my chest attached to a machine. I went to Freaking Wimbledon! I've been able to go and visit my friends who live further afield and there are just so many other things that I'm doing and will get to do that were just unimaginable to me a little over 6 months ago and I get to do it all with the people I care about the most and that is just amazing to me! 
  
As always, thank-you for reading and chat soon. 
Facebook
Twitter
Youtube
Instagram
Pinterest

25.11.15

Donation Day...

A few months ago I got a call off of the NHSBT during transplant week and was asked if I would mind taking part in something that my local hospital was thinking of doing. They told me that it  would require making a speech about me and my story and how organ donation has affected and changed my life. Now speaking in front of people is not something I'm used to or comfortable with but I thought "Hey, why not?" They also told me that Maxine would be there talking about her story as well which made me very happy because I hadn't seen Maxine since she had her transplant last year and she hadn't seen me since I had mine, so that in itself made it worth it :). 

We both turned up at 9:00 and went down to the place that they were holding the donation day only to be told we weren't talking till 12:00 but we were more than welcome to sit in and listen to the talks that were happening. I found it really interesting! They were talking about a lot of stuff that as the person who has waited for a transplant and received one you don't get to see, like how the donor families are dealt with on the the other side of it, how the retrieval of organs happens, how it's all co-ordinated, that type of stuff and it was really interesting. It kind of kept me distracted as well because I was honestly feeling so sick just waiting there to speak. I'm not a natural person in front of people I get very nervous and anxious at my PH conference I think I must have annoyed the hell out the people I was around because I was pacing in my room none stop trying to control my breathing I slept awfully, I'm just a big ball of nerves in those situations. This was no different. 

Luckily me and Maxine were both on the stage together so at least we didn't have to stand at a podium by ourselves so that was comforting. I had like a massive speech planned out and in the end I thought "screw it I'm just going to talk" because just chatting is what I'm good at, so that's what I did. It was quite nice to just tell my story. Then Maxine read out her speech and her's was far more emotional than mine ever could have been and was just a lovely thing to be able to hear. 

I'm not sure how much of a difference we could make in a room full of hospital staff but one woman did come up to Maxine and I after we had finished talking and answering questions who worked in ICU and told us that her daughter carried a donor car and even though she carried a donor card if her daughter happened to die and was eligible to donate she was adamant that she wouldn't and would override her wishes but after hearing Maxine and I talk she had changed her mind. Even if that is the only impact that we had that day, that made it so worth it because that to me is amazing that by simply just sharing a story you can change someones mind for, what I consider, the better. 

I'm not sure if I'll ever have to make a speech in front of people again but I am hoping after this experience and my PH conference experience it will at least make it easier if I do. Although I fear I will always be a nervous and anxious person before anything that involves talking to a room full of people lol. 



As always, thank-you for reading and chat soon. 
Facebook
Twitter
Youtube
Instagram
Pinterest

22.11.15

A Post Transplant Instagram....

Instagram || @staciep90
I haven't done a Instagram post for SO, SO long and my Instagram has been filling up since I had my transplant soI thought I should do one before December comes along as I'm more than likely to do a December Instagram Diary so this is just to have you all up to date via the medium of photos :).

1. "Someone's really happy I'm home" 2. Dad Home from hospital 
3. A beautiful gift from a beautiful friend 4. Nephew back off holiday 5. Welly Club 
6. My little people 7. 12 years made a difference 8. First week of post transplant pills 
9. First Wagamamas  10. Sunday afternoons 11. Jay dudes first sports day 12. Transplant family
13. Shameless selfie 14. A good high waisted skirt 15. Little boys love tents 16. 7.5km on my bike 
17. First post tx haircut 18. New hair! 19. Biopsy Stacie 20. Best friend time
21. More best friend time 22. 15 km on my bike 23. cinema ice-cream is the best ice-cream
24. A&E Selfie 25. A lovely few days away in Norwich 26. Slush puppy after a walk :)
27. Mole person photo 28. Getting organised 29. Gorgeous baby niece 30. Cosy Harry Potter time
31. "Adult" food 32. A "Nice" aunty nephew photo 33. Happy Friday 34. Lucky aunty time
35. A best friend visit 36. Cutest tea shop ever! 37. Sunday afternoons with my nephews
38. Tea and Biscuits 39. Sunday Selfie 40. Nephew turns five 41. Beautiful baby 42. bored selfie
43. First football match 44. iPhone 6S 45. Mine and jay dudes little friend 46. Me after you
47. A make-up day 48. Blogging day 49. New pj's 50. The cat burglar look
51. Child dessert 52. Disney day! 53. Pretty morning walks 54. Happy baby niece 
55. Proud Stacie moment 56. Pretty Bath 57. Lazy tired Stacie 58. My niece is a gymnast 
59. Awesome people 60. Rainy day 61. Today's accessory 62. New blog design 
63. Little trip to Bristol 64. Bestie pizza time 65. FIZZ WIZZ 66. New watch 67. Sparkler time 
68. Perfect Sunday Breakfast 69. Nutcracker tickets 70. Stressed colouring 
71. My friends beautiful kitten 72. Christmas is coming 73. Rudolph  

As always, thank-you for reading and chat soon. 
Facebook
Twitter
Youtube
Instagram
Pinterest

18.11.15

Because it's better...

source
Hello my lovely, lovely bunch. So I have a lung infection which surprisingly isn't that bad, gone are the days where a lung infection would have bed ridden me for 2 or 3 weeks and that feels amazing to me. It's a strange sense of accomplishment that my body can take a hit like a lung infection now because before any kind of lung or chest infection could have been my last and I lived in fear of that for a good year to 18months. Now I'm not saying I'm Miss Invincible because I am far from that but it's just nice, you know, to not have a bit of a coughing fit and then be totally exhausted after it and need a nap because that coughing literally took it out of you, it's kind of amazing that even with this infection I can walk somewhere and not feel like every step is some kind of Herculean effort. It's why I had my transplant, not to get a infection of course not, but to be able to take that kind of hit and still be able to do things and carry on living, not to be dragged down by something as simple as a infection. Not having to halt my life because I'm a little bit ill is something really quite amazing that I can't explain fully to you guys unless you've been through it because unless you've experienced just having to halt your life and sleep for the majority of your day and be attached to various things just to keep you going to get you through that bad bit you can't understand what being able to still do stuff even with a infection feels like. 

Now I am having to take it slower because I'm still a newbie, my heart and lungs are still new and a infection will probably hit them harder than the average persons, so I'm feeling a bit lazy at the moment. The gym has had to take a side seat for the time being because unfortunately the infection and the antibiotics are affecting me in that they are making me very dizzy and there have been a few episodes where I have nearly fainted and I would really rather that didn't happen whilst I was at the gym so I'm trying to be relaxing Stacie at the moment. I'm still trying to go for little walks though even with this horrendous weather and trying to do a little bit of bike in my room and some pilates as well so it's not completely all stop which really is something of a achievement I think.

Even though I'm very, very happy with how amazing this being "okay" with a infection lark is it is also flaring up my anxiety a bit. Not massively, like it's not affecting my sleep or anything just sometimes it's that kind of nagging reminder that, you know, I do still have to be careful and things could go badly if I'm not careful. Even though yes this infection feels like nothing compared to the past ignoring it (which I was going to do because it didn't feel bad enough to pay attention to) could potentially be very bad for me. It's a slight reminder that I'm not a totally normal nearly 25 year old and that brings up some anxiety issues for me, it reminds me of how fragile things are and could be and that's kind of scary I guess. You go through something huge and massive and hope that, that will fix everything because why would you do something like that for it not to be totally fixed? Quite simply the answer is... because it's better... Life is still not perfect but it is SO SO much better than it was and if I have to be a bit careful and still go to the hospital and doctors more than the average person that's a price worth paying for the people that I Love and a life that I love. 

As always, thank-you for reading and chat soon. 
Facebook
Twitter
Youtube
Instagram
Pinterest

16.11.15

I did it... kind of...

I DROVE. I actually drove!!!

So on Friday I had my second first drving lesson. I was panicking all morning leading up to it but luckily it was at 9:15am so I didn't have to panic for too long but seriously I was so worried about it. Then there waas the realsiation that it was Friday the 13th and although I'm not really that suspicious that really didn't help the nerves. The guy arrived, I got in the car and it just started to utterly piss it down. Just my luck  lol! I am so happy that I have picked a automatic to learn to drive in because it just takes a lot of the pressure off. When I was learning how to drive in a manual I just found it so hard to concerntrate with the whole changing gears aspect of it. With a automatic at least it gives me the time to concerntrate on others things like watching out for other cars and people and that kind of seems to put my mind at ease I guess. I feel less dangerous because I feel like I'm focusing on the right things rather than panicking about stupid things. I don't think I'm a natural driver really, it just doesn't feel natural to be behind the wheel of the car for me.

I do sort of feel like I'm doing one of the major things that I wanted to do post transplant though and that feels good because it does feel like sometimes a lot of what I want to do post transplant has to wait because we have to make sure I'm okay and all that jazz which I'm more than happy with but I suppose I'm just impatient so now that I'm actually doing one of my "big" things and  it makes me feel like I'm moving forward :-).

I do have my first infection since my transplant which is a bit worrying, I went to the GP today and have been put on some antibiotics which is all good but the GP was asking what's normal for me and that was a bit disconcerting because I don't really know anymore. I mean I know what my normal lung function should be and my temperature and my weight and my blood pressure but when it comes to infections that's all new for me so I'm trrying to figure out what's okay and what's not okay. So the  reason I went was because I've gained a persistent cough over the past two weeks and coughing up green phlegm (sorry!) and that was a sure fire sign that I obviously had something because phelgm hasn't really been a problem for 4 months. My GP asked me though if my lungs normally sound sticky? and I was just like "I don't know they're kind of new to me..." But hopefully these drugs will do the trick and if they don't I'm back at Papworth in a few weeks so I'm sure they'll be on it if there is something wrong.

As always, thank-you for reading and chat soon. 
Facebook
Twitter
Youtube
Instagram
Pinterest

13.11.15

Zoella Beauty 2.0...


Now the past few weeks I have done ALOT of shopping. A lot, a lot, a lot. Admittedly this is mainly christmas shopping but I have also brought myself some stuff too and as you can tell I decided to buy some stuff from the new Zoella beauty stuff purely for curiosity sake really, I liked her old stuff and figured I may as well try out the new stuff. 

First off I brought "The Zoella Beauty Rose Gold Vanity" [£16.00] because I probably own about 15 different wash bags/makeup bags and I really just want to reduce the amount I have so I currently have 2 skin care wash bags that I can just put it all in and hopefully gain some much needed space :). Or you know I should probably just reduce the amount of stuff I have really lol but until that happens this will do the job lol. Then there was the "Zoella Beauty Lace collar Purse"[£6.00] which I brought because I currently have a little bag of similar size that holds my tweezers, nail files, nail clippers, hair bands you know all those little bits and bobs that don't really have a place so I just stick them all together, well my current bag is maybe about 7 years old ish so I just wanted to get a new one that looks all fresh and nice, and I thought this particular one was just very cute :) 

Next up we have a few bits from her Tutti Fruity range I went for "Zoella Beauty Tutti Fruity Fresh Fizz Fragranced Bath Fizzer" [£5.00], "Zoella Beauty Tutti Fruity Scrubbing Me softly smoothing body scrub"[£7.00] and "The Zoella Beauty Tutti Fruity Foam Sweet Foam Shower Gel" [£3.50]. Now initially I was a bit dubious about what those would smell like as I was worried with a name like "Tutti Fruity" they would be over powering but it really is quite a subtle smell and still remains quite fresh smelling even with the fruitiness of it. The Bath fizzer is exactly like her old one with a slightly new design and obviously the new smell. I really loved her old one and love this one too. I would say the shower gel is a shower gel it does what it supposed to do and does smell lovely but at the end of the day it's a shower gel. The body scrub though I am absolutely loving. I usually use Soap and glory body scrubs and if you use them you know that they are very grainy which is obviously good for scrubbing and I will continue to use them because I really do like them but this body scrub doesn't have massive grains in it, it kind of seems like a balm as well as a scrub which leaves you feeling very smooth after you've used it and I really like that. 

Finally we have some of the new additions to her old range which have the old scent so we have the "Zoella Beauty Mini Fizz Bar Fragranced bath fizzers trio" [£8.00], "The Zoella Beauty Soap Pop Fragranced soap on a stick" [£5.00], the "Zoella Beauty Bath Bombini's Fragranced bath fizzers x 8" [£10.00] and "The Zoella Beauty Wonder Hand Moisturising hand cream" [£5.50]. I personally think a lot of these would make really good little stocking fillers especially the Bombini's and the bath fizz trio. Ever since my transplant I've had very dry skin so the hand cream will just be sitting in my handbag for when I need it especially now that winter is on the way and it will be getting much colder, I am not looking forward to how awful my hands are potentially going to become. The soap Pop is probably going to be the only thing out of all this I won't use personally because I am not a massive fan of soap but I had to buy it because it was so cute so this will probably go in our bathroom for someone else to use but it does smell lovely. 

Right that's everything. I personally love how cute everything always looks in Zoe's ranges and if it wasn't so pretty I probably would never buy any of it and all of her stuff continues to look lovely so it still draws me in. I think the only thing I would say is over priced would be the Bath Bombini's at £10.00 but I'm assuming the only reason for the price is because the pot they are in is glass and therefore makes it slightly more expensive I will also reuse it after a thorough washing I'll probably put sweets in it and put it on my desk so I can have sweets to munch on while I'm doing stuff :). 

Anyway guys let me know what you think and what your favourites are if you have any or if you're looking forward to trying any. 
           
As always, thank-you for reading and chat soon. 
Facebook
Twitter
Youtube
Instagram
Pinterest

10.11.15

Failing?

source
I feel like I'm failing. Everyone says how well I did getting my transplant and how easy it all seemed for me. It did and you know some of it was easy for me. The operation part wasn't nearly as hard as I had anticipated it being and there wasn't nearly as much pain as I thought there'd be but it's just this after bit that I'm finding a bit hard. 

I'm focusing very, very hard on Christmas and My Birthday because I just don't have a clue what I'm doing with my life. I know I've said it before but I just don't know what I want to do. People ask me what I'm doing or going to do and I just shrug or say "I have no idea." I don't have a plan. At least when I was doing my degree that was a focus point something to work towards. I don't have anything. That was kind of my hobby if you like, I don't have any other hobbies unless you count being able to Internet shop really amazingly? Which I don't. I wouldn't mind getting a job but that's a hard one because they would still have to be flexible in the event that I had a unexpected stay in hospital or for some reason something happened which at this stage is still a very likely occurrence. I'm not allowed around excessive amounts of people and all that type of thing.

I know it's only been five and half months since my transplant but I just feel like I should be doing something by now. I'm making sure I go to the gym at least 3 times a week which has been a good focus for me but I just feel like I need some kind of purpose if that makes sense. When I was waiting for my transplant that was my focus, I was solely focused on staying alive and well enough to get my transplant and then I did. Now what though? Where do I go from here now that I have it. Ideally I'd love to travel but to do that you need money and the only way to get money is to have a job and for me to get a job I really would prefer to know what I want to do with my life rather than getting a job just for the sake of getting a job. There's part of me that wishes I had known before my transplant exactly what I was doing with my life, I wish had had already been in the career path that I wanted to be in and then I could have just got right back to it after I had, had my transplant. 

I want to help people, ideally I would like to do that but that would probably for me mean something transplant related which I wouldn't mind doing, not at all, but I'd maybe like to help people in another capacity that didn't involve my "story" where I could just be me without being the girl that got a heart and double lung transplant. I don't want to be stuck doing a 9-5 desk job, I don't want to have finally got my life back to have it held hostage by a job I hate. It would be different if it was a 9-5 desk job I loved but I really can't imagine me loving that.

What kind of opportunities are there for a girl who hasn't worked for 18 months, has a random history degree that really doesn't mean anything and has no experience doing anything really? 

I just feel like I'm failing a bit at this post transplant life or playing catch-up I guess. I don't know what I'm supposed to be doing or what I want to do. How do people figure this out? How do they know exactly what it is they want to do? Or how to make a difference in the world? Or am I just over thinking it and putting too much pressure on myself to find something? I don't know, I'm just finding it really hard to know what it is that I want to do or can do. 

I want to do something fulfilling, something worth doing. I don't want to end up hating it and feeling that I'm just going out to earn money coming home and sleeping and doing it all over again. That's just not the kind of life I want. I want to enjoy what ever it is that I end up doing, I just can't get a good grasp on what it is that I want to do. I feel like the more I can't find it the more I'm failing.  

There's a lot of pressure from everyone in my mind. I feel like people are expecting amazing and wonderful things from me and I'm just a normal girl who happened to need and have a transplant. I'm not special enough to do amazing and wonderful things and I feel like if I don't find something soon I'm just going to be letting all these people down who have these high expectations of me. It's hard for me to shake off this feeling of expectation that I feel like I have on my shoulders. The thing is the expectation is probably from me alone and there's only me that can get rid of it but I think the only way that I can do that is by finding something that I want to do, something fulfilling and something that I love doing.

As always, thank-you for reading and chat soon. 
Facebook
Twitter
Youtube
Instagram
Pinterest

7.11.15

Driving take two...

source
I'm not sure whether I've told you guys before that once upon a time I did attempt to learn how to drive. It was 2008 I was a blissfully ignorant 17 year old who really had no idea how hard she would find driving. I honestly do not recall my driving experience with fondness, I simply remember being frightened half to death every-time I got behind the wheel of the car, feeling really uncomfortable with the driving instructor that I had because he was a rather large man and I was therefore rather aware of the fact that every-time I changed gears I was trying not to touch his leg at the same time *Super awkward*. 
 
I did five two hour lessons in total. I think I was getting the hang of driving but I just never seemed to get the whole co-ordination of changing gears whilst having a foot on the clutch and moving my feet in some kind of higgle-de-piggly-de manner and just praying for the best really. I always feared I'd crash into to something or run something over and I just could never get it out of my head that I was the person in control of this massive giant killing machine and not only was I responsible for my life whist in it but also potential people who could be passengers in it and even unsuspecting pedestrians. Responsibility for myself is enough thank-you. I'm actually a very nervous passenger and on long journey's whether that's in a car or a train or a bus I just sleep it's a tactic I have implemented for a long time but as a passenger I'm always very wary of how fast we are going, how close we are to things and I'm always very full of anxiety whist travelling not that it stops me from travelling I'm just on edge a lot. I'm sure this tactic will be used when Planes become a factor or the euro tunnel lol. 
 
There are bits about all my driving lessons that I remember with some clarity like my first one I drove into a bush and couldn't get out, my fourth one I was going around corner and the instructor decided to scream at me to change gears which at the time I had no clue how to do whilst also going around a corner but my last driving lesson will forever be burned into my memory. My last ever driving lesson was what I consider traumatising. At the time I lived in a little village called Lyneham so we were surrounded by country roads and was good for driving lessons I suppose because they were always generally pretty quiet. Now whist quiet they can also be quite hilly. Towards the end of my lesson we were coming down a hill and I really cannot recall why but I felt quite in control but I don't know why the instructor decided coming down this steep hill with a corner at the bottom he decided this was a appropriate time to start shouting at me. Now at the bottom of this hill there was a elderly woman walking with a zimmer frame quite far out in the road and whilst the stupid instructor was shouting at me this lady was obviously getting closer and the guy was honestly just confusing me so I decided out of pure confusion and not having any idea what I was supposed to be doing to take all feet off of all pedals and took my hands of the wheel and shut my eyes. Yep... this actually happened... I am actually this stupid. The guy basically screams at me, admittedly this time it's for a legitimate reason but I'm assuming that while I had basically shut down he put the brake on and must have grabbed the wheel because rather than us hitting the old woman, which was the course we were on before I shut my eyes, when I finally opened my eyes we were a good 10 feet away from her with her staring at us in disbelief. It probably doesn't need to be said but we swapped seats and he drove me home and I never drove again... 
 
Admittedly I have wanted to learn how to drive again over the years but because of how ill I got it just wasn't possible I was so tired all of the time I just wouldn't have had the energy or the strength to drive at all. So learning how to drive again has always been a post transplant goal because I knew at that point or I should say this point I should have that energy back and it means I can have the independence that I kind of lost before my transplant back. Now to make things easier for me I have opted to go for a automatic car. I do not consider this me being a lazy driver or me being stupid "because everyone can drive a manual" I just know that my co-ordination skills SUCK and I just want to eliminate anything that will possibly make driving harder for me. I'm going to be a anxious driver there's no question about it at all and I want to make it as easy as possible for me so I don't have more to worry about than I need to worry about. So many people say to me that once you know it's easy and yes that may be true but I don't want learning how to drive to be a stressful experience like it was, I want it to be something that I want to do and something I may enjoy rather than just doing it so that I can drive at the end of it. I don't want to be a anxiety riddled stress head by the end of it. So hopefully at some point within the next 6 months (I guess?) I will be Stacie Pridden with a pink driving license rather than the green one I've been holding since 2008 LOL. First lesson is on Friday so wish me luck :-/ 
 
As always, thank-you for reading and chat soon. 
Facebook
Twitter
Youtube
Instagram
Pinterest