25.8.15

Sheep Hunting...

So the other day, and by other day I mean yesterday, I went to the good old land of Bristol which is only 30 minutes down the road from me with my sister and her little clan of people. We went Sheep hunting or more specifically Shaun the sheep hunting. I never went when it was Gromit who was the main attraction last year but honestly even if I could have gone last year I wouldn't have made it round because I was so ill but this year I decided to power through the fact that I had a cold because surely even post transplant Stacie with a cold is 10,000 times better than Stacie last year. Which fyi I totally am! Excuse my beyond gross appearance by the way I blaming my cold and the fact that the weather was crap :D LOL 



If we are all honest we could not have chosen a worse day to go. It was absolutely pissing it down the entire day, literally it did not stop raining at all, ever whilst we were there. This however does not upset me in the slightest because it meant I got to tick off something on my bucket list which was drum roll please drrrrrruuuuuuuuuuuu.......... I got to walk in really heavy rain! It does not bother me AT ALL that the cold and wet has made my cold worse because I adore the rain and it meant I got to use my heart umbrella which I love also. 

The weather unfortunately did mean we had to cut the day a bit short because we had a very wet couple of little boys and it really was just getting worse the longer we were there but we found a few sheep and next year, if they decide to do something similar, we'll go on a much better day and hopefully by then my walking legs will have caught up with my heart and lungs because guys there was this hill and OMG I wanted to die! I mean my cold was obviously not helping that scenario but even if I had 100% lung function and no cold I don't think I would have coped with it lol! I had Jaydon cheering me on up the hill going "Come on Stacie it's only a little bit further... See it's just this little bit to go... It's just here!" I don't think I've ever been cheered on up a hill by a 4 year old before, I just had Candice laughing at me whilst walking next to me whilst I was swearing and saying "I hate you, I hate you, I hate you!". My legs really did not appreciate that part of the day LOL. It's amazing that I did it and actually made it up this hill and then even further up another hill. It's massively frustrating though I'm just willing my legs to be where I feel they should be, but they are still very much a work in progress it would seem. 

As I said I'm still currently fighting off my ear infection which I think is definitely on it's way out as my hearing has almost returned but yesterdays antics has made my cold somewhat worse and I certainly have spent the majority of today, minus a few mile walk that I forced myself to do, wrapped up in big old jumper with fluffy socks and a blanket and reading Harry Potter because I'm really cool like that. It makes me feel better when I'm ill though so it does the job, who doesn't love retreating to their favourite non-fictional world when they are poorly? Something that would have made me feel much better was if I could have eaten chocolate but chocolate still tastes like crap and right now I'm not sure it's ever going to taste the same ever again *sobs into her imaginary pillow.* LOL Chocolate is a extremely small price to pay for my health but one I certainly never anticipated happening so I've switched to sweets and unfortunately crisps which is a really bad thing and for some reason since the reduction of my steroids I seem to have gained the munchies which I never had even when I was on 70mg of the stuff. So at the moment I could probably eat about 20 bags of crisps and it wouldn't even touch the sides. I'm restraining myself though guys or I'm going to have Papworth "having a word with me" LOL. 

Anyway that turned into more of a babble than I intended I'm sure my next blog will be next week as I have my 12 week biopsy on the 1st September which is actually more like my 13 week biopsy but hopefully if all is good I won't have another one for a while.   

As always, thank-you for reading guys and chat soon
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24.8.15

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It's going to be ramble blog I'm afraid, I don't really know where I'm going with it I just want/need to write I suppose. 

It's been a shockingly awful day for the transplant world today (23rd August). Sometimes it seems that we as a community can go a fair while where no-one seems to be dying and people are getting the transplants that they need, people are still suffering but things are ticking along nicely. It sometimes lulls you into a false sense of security and for me at least I kind of forget that we're all  time bombs waiting for our turn to go off. Those on the list and those of us who have had our transplants too, those of us who have had our transplants have hopefully just delayed or extended the time on our own personal bomb. Then days like today where a baby who wasn't even 4 months old died whilst waiting for a heart and a young girl who only turned 17 days ago died after fighting so hard against rejection, it just reminds me that transplant isn't the magic cure that some people think it is and we still remain in a unstable and uncertain life.

I can't say I've thought about death that much since my transplant besides my occasional jokey references to it, I think I've just been in my little bubble of "I got my transplant, my donor brought me way more time than I had, I'm so happy and thankful" I mean I've probably thought about death a little more when I've been having biopsies because that's natural but then people die and bring you back from your little bubble and for me it's not that I'm worrying about ME dying it's more for my friends. I'm only very close to a very select few people that I talk to everyday or very regularly from the transplant community. I protect myself, so it's not that other people dying within the transplant community isn't sad and awful, it really is, I just have my kind of shield up where rational Stacie kind of comes in to play and thinks people die everyday you know it's life it's what happens and especially with transplant. The problem today is that it was a baby and a young girl and it's a bit harder to rationalise that in my mind. 

I feel like today has taken me somewhat out of my happy bubble, I don't feel so safe, death feels a bit closer than it did yesterday. It's really my own fault I choose to expose myself to all the transplant stuff  and it's hard to deal with sometimes but they are amazing people and there is massive support in that community and it is invaluable.

I do wonder though when or if we'll ever not be have to worry about dying for at least a decent amount of time or think "you know what Yes I'll be here in 10 years" and KNOW for sure that we will. I want there to be day where we aren't plagued by the monster in the dark that is rejection. 

As always, thank-you for reading guys and chat soon
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22.8.15

Twelve weeks on...

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Twelve weeks ago today a selfless person and family did something extraordinary for me and my family. They don't know me and probably never will know me or my family, I don't know them and will unlikely ever get to know who they were as a person but that person and their family changed my life forever, they gave me a life!

Twelve weeks doesn't really sound like a lot, it's three-ish months, but to me it feels like such a long time. Once upon a time I tried to explain to you the two kind of time zones that we live in whilst we are on the list there's the normal one where life goes at a normal speed and the 3 years when looked at from that perspective was actually not that long. You look at some things you did and you can't help but be like "was that really 3 years ago? It feels like it happened yesterday!" and then there's the List life where time is excruciatingly long, 3 years felt like 10 and you were just waiting to die. I suppose what I'm saying is I'm in a new time zone where my being ill is some kind of distant memory to me when in actual fact it was literally 12 weeks ago, how is that possible?

I'm still restricted in someways but even with those restrictions I feel like I've been living more than I ever did 12 weeks ago. It's so amazing that I can now make plans and do things and even though they may still get cancelled due to illness I don't get upset about it now because I can just reorganise it because the likelihood of me dying before I get the chance to do it now is slim. I used to get quite upset when I had to cancel things because of being ill because it seemed like my body was just one massive burden that didn't want me to do anything. The thing was you couldn't not plan things because that would be equally as depressing and you would have nothing to look forward to and if you did die then you would have spent the the end of your life just waiting for something that didn't happen. It's a hard balance to get right and one I think everyone on the list struggles with. 

It's so exciting though that I get to plan things now and not be restricted or have to worry about hills or how much walking I'll have to do. I'm planning so many things with my friends a lot I can't do for a while but it excites me that I can look 3/6/12 months into the future and know that I'll still be here to do them. I really want to fit in as much as I can because although yes I have this new life it's not always guaranteed and I've always been told 5 years is the average of what you can expect after having a transplant and although I know a fair few people who have lasted much longer I also know a lot of people who didn't make it to 5 years so I'm not going to be taking my time for granted. All I know is what ever time I have I'll be taking full advantage of it. This first year is just a bit of a limbo year because you can do some stuff but you just have to be much more careful so once public transport is a thing I can do again I will be whizzing around all over the place.  

You know it's weird looking back 12 weeks ago because I was SO ill and you can't help but wonder "Would I still be here right now?" The doctors were shocked at the state of my lungs and how bad they really were and I am 100% positive if that call hadn't have been the "right" call I would not have made Christmas it was just a case of how long my will power would have lasted because I can assure you guys it was really waring thin at the end there.  

As amazing as it is that I can do all these wonderful things and go away and all that jazz it will always be the small things that I'm most appreciative for. Simply being able to breathe without being in pain is far more than I ever expected, being able to get changed without having to stop to catch my breathe, to walk up the street, to walk up my house stairs, to be able walk holding hands with my nephews and be able to keep up with them, these are the things I will always be most thankful for and will never take for granted. I have a niece who will never know that side of me. She will never know the kind of person I was when I was ill, she may see photos when she is older of Aunty Stacie with a tube on her face but she will never experience Stacie with PH and I think there is something quite extraordinary about that.   

As always, thank-you for reading guys and chat soon
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21.8.15

The first...

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It is 6am, I'm dressed in really overly sized fluffy pyjamas with a massive dressing gown on, I'm sporting the greasy hair look so am therefore wearing a wooly hat to disguise said atrocity, whilst also  still wearing yesterdays make-up which means I look like some endangered species of Panda. Further to all these current aspects of my look I'm also pulling off the runny nose look, the watering eyes look, groggy throat noise and disgusting cough that makes people think you either have some sort of disease or you've smoked a million fags and all of this is whilst having the most painful ear infection of my life. 
Yes you guessed it folks I am ill.  

Not in a serious way, it's just the first time since my transplant that I've had a cold. I had that stomach bug that lasted a few days but I don't really count that as being ill. It's a really odd sensation this though. Normally if I have a cold I just curl up in a ball and stay in bed which is what I really, really want to be doing but I know I'm going to have force myself to at least attempt some kind of exercise and I need to do work and jobs too and I can't let a cold get in the way of that. That being said I'm going to have to be super vigilant because for the first time since my transplant I feel slightly out of breath, it's obviously the cold and the fact I'm all bunged up but I can guarantee I'll be doing my lung function about 3 times a day just to make sure nothing is wrong. Basically I'm going to be a very paranoid Stacie for the next week I would think. 

It's very hard not to worry in this kind of scenario but I am being good and trying to just view it as a cold and not some kind of horrible scenario like rejection which is where your mind immediately wants to jump to when you feel a bit crap. It's definitely not it's just a cold with the added bonus of ear infection so all combined I'm definitely going to be feeling like crap for a little while. Plus I doubt it will turn into a chest infection because I'm on antibiotics for my ear infection so I suppose there's a bonus to having that when getting this cold lol.

Something that is pleasantly surprising though is colds used to be associated with a hell of a lot of pain because I would get extra chest pain when I had one and I can't say I have any pain at the moment except for the ear of course but in the chest there is no pain! It's kind of amazing, that may change obviously if it decides to move to my chest but right now I'm appreciating the fact that I have a  cold with no associated chest pain with it. Yay!  

As always, thank-you for reading guys and chat soon
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15.8.15

Refreshed...

The first I would say 6 months post transplant are going to be the hardest and always were going to be. I think I've probably been a little bit down or not down but lack lustre the past few weeks, like I can't be bothered to really do very much except what I have to be doing, I've been procrastinating a lot and I think that's just because I really want to just be able to get out and do everything, but right now that just isn't really an option. I mean even if I could drive I'd still have to wait another month before I could drive again but as it is I can't drive and public transport is kind of out until 6 months. But saying that I did manage to get away this week for 4 days, it was awesome!

So on Tuesday I had my clinic at Papworth and everything is all great. My lung function is up to 79% after going down to 74% 2 weeks before so I'm really chuffed with that and everything else is just looking really good and all stable. My pulled shoulder is also getting better I just have to keep an eye on it and make sure I don't do any sort of heavy lifting which I obviously shouldn't have really been doing anyway I just forget sometimes that I'm still only 11 weeks post transplant as it feels like it was a really long time ago.

After clinic I went to Norwich with a friend of mine which was just so lovely to get away and hang out. I kind of got away from social media for a few days because usually I can be a bit attached to it and that's something I need to work on because pre transplant it was very much a big part of my life whereas now it really shouldn't be so much so I need to get that balance. I got to go to beaches where we did a lot of walking, for me anyway lol. I drove a boat which fyi I DID NOT crash, okay maybe I nearly did at one point but no-one died and I didn't drown which I think we can all agree is a minor miracle. I got to see some of Norwich and it's really cute, very unlike Swindon and I loved it, cute little shops and everything just had a lot of character and I really love stuff like that. Going to a Beach was actually on my bucket list of things I wanted do after my transplant so that one can be ticked off now which is exciting! 


I kind of feel refreshed and happy after just getting away for several days and now I feel a bit more motivated to really get into revising my history stuff because I really shouldn't waste the 4 years I've spent on it and I know I have a few other things coming up in the next month which I'm looking forward to doing. I feel like it's very much me wanting to make the most of this new life that I've been given but whilst I'm still so new it's hard to really get past being stuck for the moment but I know I will get out there eventually it's just getting past all these hospital appointments and being able to not be so careful. 

I definitely feel more rejuvenated though and more inspired to do things which I think is a great thing and I'm getting excited again for things to come and not so annoyed about not knowing what it is that I want to be doing I mean it's still a worry but I want to enjoy myself too with all my lovely people.     

As always, thank-you for reading guys and chat soon
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10.8.15

Inherent laziness...

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I think once you've had a transplant it's assumed that you're suddenly going to LOVE exercise. If my experience is anything to go by that is so not the case at all! 

Exercise is easier, yes. That does not make it easy! Think about it, I spent the the majority of my life being hindered by my heart and lungs that obviously led to a deterioration in my overall body, it is not used to doing things and the rest of my body is what makes exercise hard now. I suppose it must be the same for anyone who doesn't do very much exercise, they have to try and convince their body that it can do this stuff now. I'm a inherently lazy person and I enjoy lazing around in my bed or on the sofa and it takes a hell of a lot of motivation on my part to convince myself to go for a walk or get on my bike. 

I mean it is fantastic and wonderful that I can do all these things and it's amazing that I don't get out of breath as easily but it is still hard and I'm still trying to ease into it. I'm also somewhat of child in regard to if someone says to me "Shouldn't you be going for a walk or something?" I just want to say "Well actually no! Why don't you go for one instead!" 

I can totally tell the difference don't get me wrong when I do exercise especially in the morning. I wake up so sore it's like all my muscles decide during the night to just tense up and put me in pain when I wake up and doing my bike in the morning does seem to help and loosens up my chest a lot but it does not mean I enjoy it, in fact it's very far from that. I don't enjoy being sweaty and gross. I'm never going to be one of those people who enjoys working out. I'm doing it because I have to and that's okay and ultimately my body does seem to thank me once I have done it.

I really do think people just assume transplant = love for exercise but I think people need to remember we're still just people and we have to force ourselves to do the exercise just as much as everyone else does. We probably just have a bigger motivation to do it than most people because we want to keep our lovely shiny new organs in the best possible shape they can be and stay that way for as long as possible but that doesn't make it easy and it is still very much hard work.    

As always, thank-you for reading guys and chat soon
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6.8.15

The phase...

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When I was on the list I went through a phase, a phase I don't think many people really noticed unless you lived with me. It was a "Fuck it I don't care I'm going to die anyway, so may as well do what I like phase." This lead to me spending a lot of money on things I didn't really need. I'm not going to sit here and say to you I regret this phase because I really don't, I was severely unhappy at the time and spending money and buying things kind of made me a little bit happy and I was all for something that made me a little bit happier. This kind of stuff usually occurred during the night when I couldn't sleep and had way too much time to think on my hands so I would retreat to the internet and look at clothes and make-up and just things that honestly weren't needed but it took my mind off of things and made me happy when they arrived. 

How did I have all this money though? I hear you ask. Well my bank were stupid enough to give me a credit card that's limit wasn't exactly small. In my mind it didn't really matter that I was spending this money because so long as I was paying the minimum payment then it was all good because if I died then it would just go away because I wasn't attached to anyone it was just me and the money couldn't be transferred to anybody else so I was only hurting myself in the long run. I realise how awful this logic is but honestly it meant I could do things without having to really care whether I had the money or not. It meant I could go to mine and Meg's Vampire Diaries conventions and spend hundreds of pounds and not really have to think about it or care. It meant I could buy my iMac and I really do not regret that decision at all. 

Anyway the point of this is that earlier on this year about New Years I started to feel very guilty about the fact I had spent all this money even though I didn't regret it. So I decided to seriously pay it back rather than just the minimum payments because even though the money couldn't be transferred to anyone else I still didn't want to have to leave someone with the hassle of having to sort it out if I did die. The problem was shifting my mindset into the fact I couldn't just spend money how I liked so it has taken me a very long time and then my transplant happened and one of my first thoughts after getting home was "Crap, I didn't actually die and now I really, really do need to pay this off or I'm buggered." I can officially say as of this week I have paid off my credit card and do not intend to ever use it again unless it's a absolute emergency! 

I've always been quite good with money in general, I think that phase was just me kind of rebelling against my situation I had no control over anything else in my life really, what I could do, where I could go, my health, medications, my life everything got slowly taken away from me so I suppose in my mind it was a case of well if I can't do any of that stuff, if I can't control any of it I can at least do this! I'm totally not recommending it as path for other people to go down because it's beyond stressful when you do have to pay it back and the only reason I suppose I've managed to is because I live with my parents who extremely generously don't charge me rent or bills or anything otherwise I really would have been well and truly screwed. 

I'm officially skint for a while now but I suppose it's better to have very little money for a little while than to owe people a lot of money for a long time.              

As always, thank-you for reading guys and chat soon
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3.8.15

Something small with a Lush Haul...


Hello guys! So this is my first Lush haul since my transplant which is crazy, insane. I actually meant to do this post last week but obviously my biopsy happened and I ended up being there for linger than anticipated so therefore it's happening now instead. 

So last week after I had my hair done I decided to pop into Lush and get myself some bits, firstly I was super restrained I only spent £25 which I think is a miracle for me but the reason it's taken me so long is because I've been a little hesitant about baths and also the stuff I'm using in them. I have become one of those people who looks at ingredients luckily the love sales assistants were super lovely and made sure all of the stuff I had didn't have some stuff in like Grapefruit. I'm not massively sure whether it would affect me because it's not like I would be eating them but I figured I may as well not risk it because maybe it gets absorbed or something :-/ I don't know. 

I've been a bit hesitant about baths as well because I don't know whether I told you but initially I was extremely worried that my chest was jus going to open if it got too wet which I know now sounds ridiculous but it did take me a good few weeks to really get over that in my mind because I couldn't quite get that my chest wasn't going going to open because it is being held together by a wire coil or something. It is quite a frightening prospect to begin with though. I'm over it now though and I can now fully appreciate my baths again. 

If you've been reading for the past two-ish years you'll know when I had my line put in my chest this was a massive bug bear for me because it meant I wasn't going to have a "proper" bath you had to make sure the line site didn't get wet and stayed dry etc. etc. This therefore meant I couldn't have baths like I like them which is usually fully submerged up to the neck, massively relaxing type of baths they were suddenly snatched from me and I hated it! BUT now I can fully appreciate my baths again it has honestly been amazing to have such a small thing given back to me but something I wasn't sure I was going to get back I did mourn for my baths especially as they just got so exhausting at the end there. This was one thing I so very excited to get back in my life :)

So what did I get? 

Dorothy Bubble bar || £3.95
Fizzbanger Bath bomb || £3.35
Brightside Bubble bar || £4.75
MMMelting Marshmellow moment || £3.95
Butterball || £2.65 each
The Comforter Bubble bar || £4.75
Karma Bubble Bar || £3.25 

I got a few favourites because my skin is just horribly dry at the moment due to my meds so the butterball will definitely help with that as I am just getting massively fed up of having to moisturise morning and night but if I don't my skin just feels horrible to me. The Karma  and Dorothy bubble bars are new to me so I'm looking forward to using them but everything else is just a bit of what I fancied at the time :) 
As always, thank-you for reading guys and chat soon
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1.8.15

No rejection...

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You know I'm pretty sure staying in hospital for any longer than a day makes you take about 2 steps backwards. I had my "6 week biopsy" this week which was actually 8 weeks but it got postponed at 6 weeks. So this meant having to stay overnight at Papworth. My biopsy went smoothly, I'm very lucky that the sedation works very well on me and and I only sort of become "aware" of what is going on towards the end of it so I only remember them being down my throat the last few minutes of it and luckily I'm lucid enough to tell myself not to freak out about it which for me is quite amazing because I never thought I would be comfortable having people going down my throat and not freaking out about it. I had many a conversation with Bernice pre-transplant about absolutely dreading waking up with tubes down my throat it was one of the things we were both most scared about so to willingly allow people to do it and be okay with it happening is a major thing for me.

The reason you stay overnight for a biopsy is because they don't get the results till the following afternoon, or at least they're supposed to and if any rejection shows up they can treat you straight away. Me being me, my results didn't come back the following afternoon so I had to stay till the next day and I'm happy to say I'm rejection free! My lovely Dad had to go to work the whole day (he starts at 5am and finishes at 6pm) and came to get me so I wouldn't have to stay there till today, best Dad award goes to him because we didn't get home till 00:40am and he had to get up at 3am. I certainly will not be letting him do that again! I even got some best friend time while I was there, Bernice came and saw me because I was bored waiting to go home I really wish I lived closer! 

I'm sure even a short stay in hospital makes you go backwards though because I basically did no form of exercise while I was there except a short walk I did yesterday and today everything is just a massive effort I've just done 5km on my bike and I can honestly say the 10km I did the other day was easier than that 5km. So I feel like I'm going to have to work myself back up again. It feels weird for me to be complaining about "only" being able to do 5km because even 9 weeks ago I couldn't even walk 90metres in my 6 minute walk test so I really shouldn't be saying anything really. I just have to remember the next time I have a biopsy to ask to go on the bike an stuff so I don't have to rebuild again.

Anyway so other than my no rejection news, August is shaping up to be quite busy and I have to revise as well because my final exam is coming up in September and I really do need to revise this time I have no motivation to do it though because I just want it finished now, I'll get over it though and I will push myself to do it, it's just getting that motivation to do it. I think once that is done I can then try and figure out what it is I want to do with my life, I'm still no closer to having any idea but I figure I have time to figure it out now and I will find something I WANT to do rather than something I have to do. 

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