30.1.14

I can, I will...

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I've reached a strange level of calm about everything. Okay well not everything. I'm still ridiculously impatient and want my transplant to happen asap, but I think I'm okay with everything. If you read my previous blog you'll have seen that when I think about my transplant now I think about everything I want to do, places I want to see, things I want to achieve. I seem to have been able to not forget about the pain I'll have to go through to get to do all of those things but I've accepted it and I'm not so afraid of it anymore.

There was also a point in time where I felt really alone like I was doing this by myself, or at least like I had to do it by myself, but the past week or so kind of in unison with how I think about my life afterwards I suddenly feel like I have this horde of people behind me, supporting me, willing me on. It's a really nice feeling because sometimes I feel like the fact I'm still waiting for my transplant is starting to bore people, normally I feel like people just feel like "Oh for god sake make it happen already so we don't have to hear about it anymore" and trust me I feel that way about myself sometimes too. At the moment though I feel like its more a feeling of love from people like they want something really good to happen. It's such a nice feeling and I really feel like I will be able to do it. I sometimes I ask myself "Can you really do this Stacie? Is it really worth it?" Suddenly I feel like I can do this and I will do it because I simply cannot wait to live the life that is waiting for me.   

Chat soon guys 
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28.1.14

Better things are coming...

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I haven't been having the best few days. Migraines that really are not the most fun things in the world, an unfortunate side affect of my drugs. Overall though I can't complain all that much, I've been making sure not to overdo it or put myself under any amount of strain, at least until I see Hammersmith on Friday. 

The past week or so I can't help thinking about everything I want to do with my life post transplant at the moment. I've been on Pinterest a lot. I know I'll end up living with my parents for at least 18months to 2 years afterwards, to make sure I'm fully recovered and I'm already planning on saving to move out. I'm never going to be able to get a mortgage unless I happen to win the lottery or mysteriously come into a large quantity of money, I'll be renting a house for the rest of my life or unless I happen to find a man who doesn't mind taking on the burden of a mortgage for the both of us. I've been pinning lots of interiors which are making stupidly excited about getting my own place eventually. Luckily I won't have to buy anything for my bedroom as I actually like everything I have in my current bedroom lol. 

Me and my sister have been talking about the trips I want to take. I'm thinking I'm going to have to start off small in the beginning just long weekend trips, and not very far afield. Obviously this will be about a year after my transplant and so long as I'm stable. The long weekend trips I'm thinking are Auschwitz, thats only in Poland so not too far away and I can maybe check out Krakow whilst I'm there. Then there's Pompeii but as thats only a day thing, I would likely stay in Rome, this one might be one that would have to be later as I'd want to discover Rome for longer than a weekend. Dublin as that is only a drive and a ferry ride away I could spend a long weekend there. I want to visit Edinburgh as well, as the last two are within the UK I feel like they will probably be the ones I will start with. The list just goes on and on, there are so many places I have to see. Maybe I should actually start saving now?! I would have to curb my shopping habit a little LOL. 

I have officially decided I need to learn how to drive but that may have to take a backseat at the moment as it's a bit risky what with my wonderful episodes I seem to be having at the moment and I would rather not risk having one of those in the middle of a driving lesson, as we all know that's exactly when they would happen lol. I've made the decision that when I do learn how to drive it is going to be a Automatic I just do not have the co-ordination or the inclination to drive a manual car or the patience for that matter, so hopefully that means it won't take as long to learn how to drive and also I'm hoping that the experience will be much better than my last experience with driving.    

It's weird, the past 21 months when I've thought about my transplant the stuff that comes into my mind is the recovery. In my 23 years of being I have had my fair share of pain and some of it you would think that would mean I'm not scared of much else. The thing is when it comes to my transplant I can't help thinking I'm going to be in a lot of pain. I don't even know where it's come from because no-one has ever actually said to me that 'you will be pain.' My brain just assumes I will be, I assume with such a massive operation there just has to be intense pain that comes along with  it because surely that is the trade? Some wonderful and brave person gives you a life, a life you have never had, surely you can't be given that without having to pay some sort of price? I think in my mind I just assumed that price was pain. So the past 21 months that's all I've been able to pretty much think about with regards to my transplant and that has been what has scared me the absolute most but the past few weeks when I think about my transplant I can't help but be excited for the things I want to do. Maybe it's because my sister is buying her first house which means her and her fiancee can finally get married and it just makes me want to be able to do all the things I have ever wanted to do even more as I watch them do the things they've always wanted to do and I think my brain has started to readjust and realise that once my transplant happens, I am going to be able to do them. I want to do them so much. I just wonder how much longer I'm going to have to wait to be able to do them? 

Chat soon guys 
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23.1.14

When you least expect it...

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Hello my lovelies. So as always I've been thinking because I will never stop lol. Everyone I come across tells me that "your transplant will happen when you least expect it" I think this will always be the case for most of us because you never believe it will happen until it does. You hope very, very hard that it will happen because if you don't you would just be accepting the fact that you will be dead soon so all you have is hope and what you believe in is hope. I will never stop hoping. That is the reason why I think every-one tells me it will happen when you least expect it. That would be always then.

I've been thinking a lot about when it does happen and I can't decide whether I should get a journal for it. I know of people who have memory issues afterwards, for different reasons trauma, medication you know there are many reasons for it and I think maybe having something to write in afterwards would be good for me to be able to look back on and for me to remember if I happen to get a few memory blocks on the way. I also think it might be a good idea for my family to write in while I'm asleep because we don't know how long that will be for and I'm sure all the information overload for them will cause some memory issues especially when I ask them what happened while I was out.  I don't know, what do you reckon? Good idea? Bad idea?

  Chat soon guys 
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21.1.14

21months waiting...


Good Morning my wondrous Blogland, 

It has officially been 21 months since I was placed on the transplant list. 21 very long months. I honestly didn't think I was going to be one of these people, you know one of the ones who had to wait an exceedingly long time. Not because I'm special or anything (I'm in fact the very opposite), I just really thought I wouldn't have to wait this long. I thought when they said you might have to wait 2 years for this it was something they say because they have to, like side affects to pills that probably won't happen but they put them there just to cover their arses, I figured they just say you might have to wait 2 years because they have to cover all their bases. Then the realisation hits that you aren't going to be one of those people you hear about who only wait a few days, a few weeks, or even a few months. You are in it for the long haul. What makes it harder is that I don't even have the option of just getting lungs if I got that bad, it literally is all or nothing for me, no compromise, no in-between. 

All that being said I'm so pleased to still be here and I'm confident it will happen eventually, I've just got to be patient. All this waiting will be worth it in the end. My life is waiting for me and I will get there :) 

I have actually got Hammersmith today and will be having lots of lovely tests and what not so hopefully we'll discover if there is anything wrong with me that we are currently unaware of and hopefully everything will be fine and dandy. 

I just want to say thank-you all for being so wonderful and supportive and being with me on this journey it means a lot.

^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^

So that up there got written yesterday, before yesterday happened. So I was supposed to go to Hammersmith yesterday as the above indicates but oh no life and the universe had other plans. The hospital transport decided to break down on the way.  I honestly thought me and my mum were going to die in that car and I'm actually amazed we even made it to Reading. The car showed signs of failure just as we hit the M4 and it wouldn't go above 60mph and every time the guy attempted to accelerate it would slow down and he was intermittently driving on the hard shoulder every time the car decided to suddenly go down to 20mph. It was also really foggy yesterday and you could barely see 20foot in front of the car at some points. I was anticipating being hit by a massive lorry most of the journey. Thankfully the driver decided to pull in after some persuasion from my mother. This then resulted in me and my mother being abandoned at the Reading service station for 5 hours. The transport people told us they were only going to be an hour and after 2 hours I got fed up and basically rang them every 15-20minutes because they kept telling me a car would be there "in 15-20minutes" trust me when I say after 2-3 hours of being told a car would be there in 15-20 minutes I didn't believe them. 

So needless to say we didn't make it to Hammersmith so I have to rearrange the appointment which I'm guessing probably won't be until my original appointment on the 10th of February. Great lol.  

Yesterday just did not go to plan. I didn't think spending 5 hours in a service station would make me tired but by the time I got home I went to sleep and pretty much stayed that way till midnight, woke up for about 2 hours and stayed asleep until 10:15 this morning :) which is why this blogpost is happening now instead of yesterday when I actually intended for it to go up.  

So we'll just forget yesterday ever happened LOL 

  Chat soon guys 
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18.1.14

Thoughts, lots and lots of thoughts...

Hey Blogland

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This week has been an odd one for me, I've been up and down like a yo yo. I've kind of been stuck at home due to whole collapsing incident and Hammersmith seem a bit worried so we're all just being a little careful, especially considering I'm so used to being independent a going places and doing things by myself we just want to make sure nothing happens when some-one isn't with me. As much as I like being home when you're kind of forced to be at home all you can thing about is not being at home so that sort of had me down a little. Then that gives me time to think and I think far too much, too much for my own good sometimes. 

It was sort of on a 'Woe is me" trip this week. Why am I still waiting? Surely 23 years of fighting is long enough for the universe? Why does the universe hate me? Why does everyone get to move on with their lives? Why can't my body give me a break? Why am I the only one left still waiting? ( <-- I know this one IS NOT true but I was being over exaggerating Stacie this week lol). I just felt stuck. Stuck where I am whilst everybody else gets to move on and do all these amazing, wonderful, fulfilling things with their lives. I felt and definitely still do feel like I've served my time 23 years fighting with my own body, if I had been serving a sentence I feel like I've definitely done my time. Then add to that waiting for something for nearly 21 months, all of it was coming together in my brain and just really dragging me down. It seems far to easily done nowadays.  

I sort of gave myself a break from things like Facebook this week, I was still around checking out Twitter and making sure things weren't going completely tits up with friends but it was good to just give myself a bit of a social media break for a while. Still been talking to my friends because well you know thats the miracle of a telephone and texting lol and they all keep me grounded and sane and bring me back down to reality and help me think of their problems and other normal life things and take my mind off of my stuff that I shouldn't think too much about. I don't know if they realise how much it helps to think about their stuff rather than mine.

I did however seem to pick myself up a little and now that I have an appointment with Hammersmith on Monday, this house arrest thing, is near it's end and they'll hopefully be able to up my Flolan which if we're lucky will do the trick. They'll also be doing a few tests while I'm there to make sure it's nothing sinister because for about 7 days now my oxygen level has been in the very low 80's so clearly there's something going on as that just isn't normal for me. They may also do a CT scan while I'm there to check out my chest and my head as well because the numb arms isn't a regular thing so they'll be checking for things like trapped nerves, blood clots or if it's brain related so fun times!

I feel cheerier though at the moment I'm kind of just thinking, whatever happens, happens. I had hoped that the stress I had anticipated for this year would have been later on in the year but I suppose I was going to have to deal with it at some point, so why not now? It's just another hurdle in my life, one I fully intend to conquer. 

I feel hopeful though... still! and I think thats a good thing... So long as I'm hopeful I'm pretty sure I can carry on waiting for as long as life needs me to. Life is obviously just seeing how far I can stretch and I think I'm pretty stretchy :)      
Chat soon guys 
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10.1.14

Clinic day...


So today was CLINIC DAY. I wasn't really looking forward to it if I'm honest, or it was more the 4am start and 3 hour drive there and back I wasn't looking forward to but once I was there I was actually really happy to be there. I had all the regular tests done that they normally do. All good :)

I was really pleased to have Paul as my transplant co-ordinator today, he's my favourite! He's so funny and just gets me so I'm always pleased to see him. I got weighed and I have officially lost another 6 kilos and Paul said I can stop now :D I just have to try and maintain it. It's kind of a running joke between us because when I was first put on the list and they told me they wanted me to lose 10 kilos I scoffed and told Paul there was no way in hell that would end up happening, I liked my food too much LOL. So today I proudly announced to him that I was 67.5kilos a lovely healthy BMI of 24 and nearly 15 kilos lighter, he laughed and said it was funny coming from the girl who said she liked her food too much. It's a good weight for me to be because it means I still have some meat on me so when I have my transplant I have some weight on me thats okay to lose. It also helps and offers more potential donors for me. So everyone seemed pleased with that :)

Ummm with regards to health stuff, they're a little worried about all the different episodes I seem to be having and that my chest pains seem to be getting worse and that everything is happening so close together. They're more worried about me collapsing and the weird numbness that I'm getting in my arms intermittently and they may get me to have a CT scan sometime soon. They're gonna wait for me to see Hammersmith first though because they don't want to step on any toes which I get, so I'm ringing them on Monday (as I got home too late today to ring them) to try and get them to move my clinic appointment forward so we can try and get a plan of action in place because if I'm about to go downhill rapidly they want to catch it now rather than later, which sounds all good to me.  After all that they went through a form I filled out last year again with me because when I filled out this form last year I had no clue what the hell I wanted and literally put "not sure" on the whole thing LOL. So this form basically asks what organs you would be willing to accept. There was very little information on this sheet so I don't think I made a very informed decision when I filled it out. So Debra (One of my doctors) went through everything and went into detail what things meant, like Cancer. That doesn't mean you'll get an organ from someone who has say Lung cancer but more likely someone who probably had a brain tumour and brains are very isolated cancers and would very unlikely spread to other organs. Stuff like that, that wasn't on the form. They just wanted me to give a yes or no answer so that the next time I get my call I don't have to be stressed out thinking about whether I've made to right decision to say yes to some organs like I was with my first false alarm. 

I got the pleasure of meeting fellow ex-PHer who had her transplant 11 years ago I felt really bad because I'm so awful at recognising people but luckily she recognised me and came over and said hey. I so often get messages from people who are like "were you in clinic today?" and I just wish they would say hi because I love meeting fellow transplant people and PH people and I'm usually so oblivious, I should work on that. I also got to meet the receptionist who I talk to every month, to give my monthly updates to. She especially came down to see me bless her, and I could see her staring at me for ages and I was like "why is that lady staring at me?" and finally she came over and introduced herself. She really wanted to know why I was so happy and cheerful all the time. I always forget that people aren't generally as chipper as me lol. 

Annnnnd Finally I got to go and see Bernice, I've mentioned her on many a moon but if you don't remember her she is the young lady beside me in the photo above ^^^^ and also if you want to find out more about her here's the link to her Blog. Me and Bernice have been transplant buddies for quite some time and we get to see each other a few times a year because we both go to the same hospital and Bernice got her lovely new lungs back in December if you remember that post. It's the first time I've seen her since her transplant and she's looking SO well and we had a lovely long natter about everything which was really good for me because I know Bernice will always tell me how things really are, not the doctors embellished truths LOL. It was also a very momentous occasion for her as it was home time after 7 weeks in hospital so I was pleased I got to see her today, it made me one happy girly even though I've been talking to her pretty much everyday LOL but there's nothing like actually seeing someone in person :). 

So i think thats everything from today 
Chat soon guys 
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9.1.14

Here we go again...

Heya Blogland,

So last night I had my first trip to A&E of 2014. It has to be said I knew I wouldn't go through 2014 without having a visit or two to A&E but this was a tad sooner than I would have liked. Unfortunately whilst walking to a taxi with a few of my friends my body decided it was time to collapse. It is the first time in quite a long time that it has happened. Collapsing doesn't scare me if I'm completely honest because before I was diagnosed with Pulmonary Hypertension it was a regular part of my life and it was just normal that I would occasionally faint on people. However when I got diagnosed they put a little tube in my heart which keeps my pulmonary artery open and in affect stops me from being able to black out completely but I can still collapse but after they put the tube in it seemed to stop any and all collapsing/fainting episodes probably thanks to the medications they put me on as well.

So I have been exceedingly fortunate to have gone many years without having fainting episodes.

Unfortunately more recently I have been getting closer and closer to fainting/collapsing. My doctors are all fully aware of this and we all knew I would eventually start fainting/collapsing again when I started getting worse. I just obviously wasn't as vigilant yesterday as I normally am because I never normally let myself get to a point where I will collapse.

I think it's going to just be a case of me having to more careful and not let myself get to that point again, not just for me, but for the people around me because that has to scare people and I never want to scare anyone. Luckily for me the people I was with yesterday called an ambulance and were really great but I just feel so bad having to put anyone through that.

It was a pretty bad experience in A&E to be honest. They took about an hour to take any bloods even though they considered me a "High Risk" patient. They had no idea what my obs were meant to be or my Blood pressure and had to keep asking me what they were meant to be, really reassuring! Then when I went for a X-ray they had no idea that they would be seeing a lot of different things in my heart that have been put in there over the years, which I then had to explain what they were even though I don't even know entirely what's in there as a lot of it was done when I was like 5 years old. Then they wouldn't let me leave because my blood pressure was low (which it wouldn't have been had they let me eat or drink anything) and my heart rate was pretty high which isn't completely abnormal for me. Then they kept telling me I had to wait to be seen by the medical team to review the results. After 5/6 hours in A&E they then moved me up to a ward where they told me I would have to wait a further 3 hours to be told the results of my bloods and x-ray even though they considered me a 'high risk patient.' At this point I was pretty fed up and was not going to wait another 3 hours to be told I was fine, as I knew I was, because I know my body better than most doctors and therefore  I discharged myself.

Normally I'm a fairly patient person and I don't get mad or impatient with nurses or doctors because I know they have a hard job, I've witnessed it on many occasions but last night was just an utter shambles. Having to constantly repeat yourself to every Tom, Dick and Harry is frustrating, why haven't they read my notes? Then when the doctor treating you doesn't even write down half of what you've told him (which you wouldn't have told him if it wasn't important), which is why you have to keep repeating yourself. Then they try to use a dressing on you that you've already told them you're allergic to, you just get to a point where you're a bit fed up.

Hopefully that will be my last visit to A&E for a while because I will be avoiding it like the plague!

Chat soon guys 
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2.1.14

The Year ahead...

Hey Blogland, 

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So I'm sat here munching on a tub or Paprika Pringles, watching season 2 of The Vampire Diaries, whilst texting, facebooking and tweeting  a few friends and writing to you lovely people all in the name of procrastination and my eternal mission to avoid writing an essay. 

I did decide to write this post yesterday, I just didn't plan on writing it so soon but may as well while I'm not doing what I'm meant to be doing :). So my sisters seem to think my last post was depressing because they think that because I think this year I will either die or get my transplant that is apparently depressing. Maybe I don't have a good radar for these things but I don't think that, that is depressing I'm just extremely realistic and I'm not going to fool myself by saying I'm definitely going to make it to 2015. I refuse to give me or anyone else around me that kind of false hope and if that means I have to be very blunt about my situation I'm afraid that's just the way it has to be. That being said I do believe with my whole heart that I WILL get my transplant this year, it is going to happen I just know it. But even with that belief and the belief of everyone around me I think it would be stupid of me to think making it to 2015 is a guarantee because it's not, not for anyone really. 

Even with that on my mind I'm totally excited about 2014 I have a tonne of things happening that I'm really excited about, last year I didn't really have anything planned to keep me occupied but this year there's a few things and I'm sure that more will pop up throughout the year too. I have a massive family visit next week which I'm excited for because we don't get to see each other too often so I'm looking forward to meeting new cousins who have appeared recently and catching up with others.

In February me, my friend Rosie, her sister and her Boyfriend are going to see Taylor Swift, I cannot even begin to describe to you how excited I am for this. I'm not normally a music person I very rarely know who sings a particular song or their names but Taylor Swift is one of the few people that has made my list of frequently listened to people. I actually think this is one of my favourite Christmas presents that I've ever given someone and I know Rosie love her too so we are equally as excited as each other. Eeeeepppppp! 

April I have my Pulmonary Hypertension conference. I am SO excited for this I get to go to a beautiful hotel which I love and get to hang out with some of my amazing PH friends, it was a fun weekend last time and I'm more excited bout it this time :). It's really good to be able to meet with people that get what you go through every day, who understand. You can talk about things that generally you don't because it's not "socially" acceptable and you get to have some fun and learn things too. 

Then I have Mine and Peggy's annual Vampire Diaries convention in June. Always a weekend of fun with some of our lovely convention friends who are THE only people who understand why you have an obsession with particular fictional characters and similar obsessions :). 

Then in August the thing I think I am THE MOST excited for is The Ant and Dec Saturday Night Take away tour. I'm so excited for this I cannot even tell you. I Love Ant and Dec so much, I watch everything they present they're just so funny! I actually have no idea what the tour will be like or whats going to happen on it but I really don't care it's going to be awesome either way :D. 

I'm sure more things will happen throughout the year that I'll be excited for but so far these are my main points of focus for me to sort of aim for and they'll keep me excited throughout the year :). I also plan on visiting more of my transplant friends and other friends who live a bit further afield because I think it would be good to sort make more of an effort on that side of things.  

I hope you guys had a awesome New Year and hope that you have lots of exciting things planned for this year too, I could use some ideas for more things to do if you want to suggest anything within the England area :) 

Chat soon guys 
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