27.11.13

Unexpected hospital visit...

Hello Blogland, 

My very tired mother and me, I got bored LOL 
So my blog this week was meant to just be about me avoiding doing my work and just being out and about with my friends and all the normal stuff life brings. Those are the types of of blogs, although not interesting, we like because it means I'm fine, I'm not scaring anyone ect. Oh no, no, no my body decides to freak the hell out of me last night. 

So last night I was minding my own business in the middle of a perfectly normal argument with my dad, as you do, and then suddenly the right side of my body decides that, that is the opportune time to go entirely numb, then my right arm decides to move entirely by itself because it certainly was not me moving it and I'm not sure I can move my arm the way it was moving itself either LOL. I also couldn't speak properly which scared me more than anything because I was trying to communicate to my mum and dad something was wrong but the only thing that was coming out of my mouth was weird noises. Anyway we rang 999 and they were super fast and a ambulance got there within 10 minutes, after 20 minutes I was getting the feeling back in my right side and I felt pretty normal just a little freaked out and I had a massive headache. 

When the paramedics arrived they did the normal checks asked about a million questions because of my massive medical history they needed a general gist of what was going on. By the time all that was done I felt okay but I had unusually high oxygen levels for me which is good for the doctors and paramedics but may not have been that good for me because i'm not used to oxygen levels that high. Normally I sit between 85%-87% but when they did my sats I was 94% and I'm never that high not even when resting and on oxygen so that was unusual. They took me to A&E though because they were concerned that it could have been a precursor to a big stroke and if it wasn't it just meant they could rule it out and try and figure out what it actually was. The numbness however happened again as I got into the ambulance and my hand decided to once again move by itself which is so weird to see. I was tachycardic the entire time but that's really not that unusual for me. 

I got to A&E and it's looking really nice in there, they're doing it out it's looking better than I've ever seen it :). They did some tests and we can definitely rule out a stroke, the fact that I'm on Warfarin makes me twice as unlikely than a regular person to have one. If I had been having a stroke there would have been something serious going on with my blood and heart and there wasn't So Yeyy! The doctors were kind of flummoxed and have no clue why it happened and the problem is my right arm  keeps going numb and has actually been doing so since they put my new line in back in August so we potentially think that it has something to do with that and it maybe something nerve related. 

On a positive note when they got my blood results back the doctors did say that if they didn't know about my heart and lung condition and were solely going on my blood results that I would be one of the fittest people they've ever seen. Apparently my haemoglobin levels are like that of some-one who lives in the Himalayas which apparently is really good, amazing cholesterol levels, I have no infection markers so from my blood results it would appear that I'm a completely and unusually healthy young lady, so at least I have one thing going for me LOL. 

I'm going to be ringing Hammersmith today and see what they want to do about it and hopefully I will be totally fine and I'm really hoping that is my last visit to A&E this year I feel like I'm becoming far too familiar with that place.

Chat soon guys 
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21.11.13

Chatting...

Morning Blogland, 

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So this blog is just gonna be a bit of a chatty one I've got a few things I just want to chat about so obviously my blog gets the brunt of it :). 

So after Saturdays shift at work I pretty much decided I couldn't do it anymore, I felt awful after it! I was being a bit melodramatic but I did feel awful and was convinced I couldn't do it anymore. It's not like I even do that much really I think it's the constant getting up and down from your chair and then having to keep up a constant stream of talk that does it. Sometimes even speaking can make me breathless and I can't tell you the amount of "you must be really unfit" looks I get when I have to stop mid-sentence to get my breath back. However all that being said I went out with my work chummies the other day for a fellow work chummies leaving meal thing and they all just remind me of why I continue to go to work. It has absolutely nothing to do with going to work itself or the 'joy' of serving our nations public but the people I work with are just the nicest most wonderful people! They are probably the only reason I continue to go to work. We don't ever really have any issues between us and we all seem to get on, there are moments when you want to wring someones neck but in a brotherly sisterly sort of fashion, it's just that sort of place to work and I love them all there :D. So my melodrama passed and I realised how lucky I am to work with the people I do and I will continue to persevere for as long as I can :)

Monday I had to go to Hammersmith for PH clinic, that passed with no drama and was fairly boring. I'm still ridiculously ill blah blah blah... One really good thing that came out of Monday though was that I officially hit the weight goal that Papworth set me back in April 2012 and I'm actually now a few pounds under it. It has taken me 19 months to lose 10 kilos and I know how ridiculous that sounds because it shouldn't have taken that long but I've been up and down like a freaking yo yo this year especially, and to demonstrate that fact I've been in FOUR different stone brackets this year. How is that possible you might ask well when I had my infection I retained an intense amount of water and was in one stone bracket then I went up to the next one and continued to go to the early stages of the one after that, to my absolute horror. I did however manage to get back down from there and lost 2 stone in the space of 5 weeks if any of you remember that post. Since then I've just been gradually losing it not paying too much attention to it but making sure to cut back on my "crap food" and I've just managed to lose that extra bit and I'm finally in the stone bracket that I haven't been in since I was in school. It's weird the only place I can sort of tell the difference myself is my face because that has always been pretty round if I'm honest and now it's more angular and bit more square. I can't really tell the difference anywhere else although everyone I see who hasn't seen me in a while says "you look really skinny". I'm worried it'll be a vicious cycle I'll get to the weight I want, not be able to tell the difference and want to lose more weight and then start again although if I'm being completely honest with myself I love food to much to probably keep up an consistent weightloss lol. I think for right now I'll just try to stay where I am as that seems like a good healthy place to be for when I get my transplant :). 

And final topic of the day is, I think I've been so busy running round the past 4/5days I got my stupid cold back I feel like someone stuffed my head full of cotton wool and went to town with a grater in my throat. I had managed to go quite a while without using my oxygen and unfortunately I've had to whack it back out again. Every-time I have to use my oxygen there's this small irrational part of self that feels like it's giving in because essentially by using my oxygen I'm asking for help and I hate it. I'm a pretty self sufficient person and I don't like to ask for help, on Monday my doctor picked up my bag for me and carried it and it really killed me that she did that, she was just being kind and does it for most of her PH patients but the irrational side of me was like "does she think I can't carry my own bag? why? Do I look really ill today or something?". The only time I've ever really given in was when I decided to go on my Flolan, that was a massive step for me as it was me kind of admitting to everyone that I had finally gotten to a point where I really couldn't do it by myself anymore, and as much as I wanted to tough it out till the end by myself I just needed a bit of relief and even though the Flolan didn't give me the results I wanted or expected I got to come off of my oxygen and go back to using it when and if I needed it, so that was kind of a win even if it did nearly kill me. But I'm trying to re-train my brain into thinking that it is absolutely fine to be using my oxygen it's just giving me a rest but I think because of years of negative associations with it I'll never be completely okay with using my oxygen, it's just one of life things. 

Chat soon guys 

16.11.13

Expectations...

Hey Blogland, 

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So some-one was enquiring about life expectancies etc. on the PH FB page and it just got me thinking about doctors and when they give out life expectancies. I'm not quite sure I agree to doctors giving out life expectancies really. 

Now I'm not oblivious and I do know that I am ill and my life expectancy right now is crap but to be honest I can't take it that seriously, when a doctor says they don't expect me to live out the next year I can't and won't believe them. I have been given several life expectancies over the years and that in itself is just ridiculous to, I have been told several times by doctors that I will only live to see said certain age. I am only 22 and I've been told quite a few times that I shouldn't have made it to this age, medically speaking that is. I literally grew up thinking I wouldn't make it to 18 then it was 20 and now I'm turning 23 next month and it's slightly mind boggling to me. 

I don't think doctors should really be allowed to give people life expectancies because they don't take into account the person and their will to live, I could have let the fact that doctors repeatedly told me as a child that I wouldn't make it to adulthood, I could have let that bring me down and then yeah maybe that would've happened. I refused to be the 'ill' child in school and I lived pretty normally, I could have been that ill child I was certainly ill enough to be that child, but thats just not me. 

Right now I'm being told exactly the same thing that I've been told my entire life and doctors really don't expect me to live much longer but that really just isn't me I WILL live long enough to get my transplant because that is just who I am as a person, I have never bowed down to expectations and I certainly don't plan on starting now. I've got far to much to live for.   
Chat soon guys 

15.11.13

Hotel Bound...

Heya Blogland, 

Well as some of you may remember I told you about my aunt sending me a spa day for two which me and my sister took advantage of it yesterday and today. I got to have my nails done and have a facial as well. My nails look so pretty and I love them! They are a gold base with a gold fibre polish on top, I think they would be really perfect for Christmas and I may have to get something similar done nearer the time, although saying that the hotel had christmas stuff everywhere and it definitely felt like Christmas in there :). My face feels great after my facial and I completely recommend it if you feel like your face needs a bit of 'revitalisation'. Meg also had a facial but she had a back massage too and she says that although her back feels much better she felt very 'exposed', it was So funny when she was telling me about it, but if her back feels better then I'm all for it. 

I also had the wonderful opportunity to see one of my transplant friends while we were there! He lives over in Wales so it's hard to see each other but seeing as we were there it was a good time to do so. We could have probably spoken for days, I really wish people lived closer to me. 

I'm likely to be a bit MIA for a week or two I have an insane amount of work to do, as always I suppose, but it always just sort of sneaks up on me. I also have a bunch of doctors appointments soon I feel like everything just happens all at once. Well hopefully once I get this next 2 weeks out of the way I'll be done till after Christmas and that gives me a chance to enjoy December :)

Mine and Peggy's room in case you are wondering I had started doing my drugs in this pic lol
Treatment room after I had, had my facial 
My prettyful nails 
It was definitely Christmas there :) 
Chat soon guys 

11.11.13

Fully prepared...

Hey Blogland, 

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Well although my life has been anything but interesting I figured I should do a blog post because I like to do one at least once a week because I don't want you guys thinking I've got my call and I haven't LOL. 

I am 100% prepared for December, I'm so excited about Christmas! All my shopping has been done and wrapped and all Christmas cards written all they need is a stamp. I feel so prepared this year because I wanted to make sure I was because obviously having 2 false alarms this year I figured if it was going to happen anytime it was going to be December. So now that I'm prepared if it does happen all my family and friends will have something from me no matter what way the op decides to go, which makes me very happy. Although now that I'm this prepared I just know it won't happen I've kind of jinxed it I suppose LOL.

To be honest I have always said that I would prefer not to have my transplant over Christmas or my Birthday because I don't want to miss it all but for some reason this year I kind of don't mind. Imagine if I got my call between my birthday and Christmas or my Mum's birthday it would just give me an extra excuse to celebrate in December. December has always and will continue to be my favourite month of the year and if it were to happen then it would just make it a million times better. What's missing 1 year when I could get 10, 20, 30 more years out of it? 

After being completely prepared for the coming season me and my sister are off to our spa day on Thursday/Friday I'm getting my nails done (which are in dyer need of professional attention) and having a facial because I'm not allowed massages and Meggy is getting a back massage (because of her bad back) and a facial as well. I'm super excited it's always nice to get pampered, and we may get some shopping in while we are there on the Friday as I really want to pop in to MAC and maybe buy a few sneaky little things :D. I'll try and take some photos and do a blog post on it for you :). 

Anyway other than that my cold is pretty much gone and I'm feeling really happy within myself other than a few down moments about being a little annoyed with a certain attachment in my chest but nothing amazing to worry about and hopefully it won't be there for too much longer and then I can just have 2 scars to remember it by :) 

Also exciting news The PHA are doing another PH conference in April next year and I'm once again forcing Megan to go but she'll enjoy it, she did last time LOL. I'm pretty sure a bunch of my PH friends are making their way there too and I cannot wait to see them! Hopefully I'll have had my transplant by this point but PH will always remain a part of my life, it made a massive indent in my life and I don't plan on just tossing it aside because I happen to no longer have it. I'm soooo looking forward to next year so many exciting things are happening :D 

Chat soon guys 

4.11.13

Cold...

Hey Blogland, 

So I'm currently suffering from a cold which decided to rear it's ugly head this morning, I guess thats the price I have to pay for having a busy few days lol. I actually felt it coming on yesterday because I had a sore throat but considering all my sore throats recently never turned into anything I didn't really pay much attention to it. So this morning I wake up and I feel like crap, sore head, sore throat, sore nose and my voice also resembles something of a mans voice lol. I can't complain really though I haven't had a full blown cold in a while and if I have one now hopefully it means I can avoid having one over Christmas. I think it's been at least 10 years since I didn't have a cold or chest infection over Christmas so I'm not holding out much hope :). 

I've had a busy few days just generally doing quite a lot not having much a of a chance to just sit down and write to you guys.  So while I sit here wrapped up in my newly acquired cat jumper, I figured it was the best time to do it :). 

I got to see one of my besties Rosie as she was down for her Dad's Birthday and we did our usual sit and chat about everything for I think it was 3 or 4 hours and eat a lot of Pizza and Cookie dough. Once again me and Rosie both got mistaken for 18 year olds. This will always be strange for me and I probably shouldn't complain because I'm sure when I'm 30 I will be happy to still look like an 18 year old, I think the thing for me is I've looked exactly as I do since I was like 13/14 years old (maybe with just a thinner face nowadays) and when I was 14/15 I could get away with being 18, so my teen life people mistook me for being older and now that I am older people mistake me for being younger it's just odd. Maybe if they listened to mine and Rosie's conversation then they would just assume we're older when we chat about politics and history LOL.  

ignore the fact I look horrific
We had a pretty laid back halloween this year we just all sort of gathered at my sisters house with a bunch of friends, beers, food etc. and just had a laugh. Sometimes it's so much better when you can just chill out and sit on a sofa and just chat to friends. That is more my kind of evening :) 

Meggy, Me, Candy and Sam
Ben, JoFo, Salter, Dean and Warren
Then last night we had our own little fireworks in our back garden because first we refuse to pay extortionate amounts of money to go see displays elsewhere when we grew up being provided with  fireworks displays by the RAF and they never charged anybody to go see them, and they were always amazing and the ones you pay to go see are really always rubbish. Anyway away from that rant we went and brought a few fireworks and decided to do some, we made sure to buy the quiet ones because Jaydon and Megan both hate loud fireworks. It was really good no-one ended up killing themselves with the fireworks and I got to use sparklers which is always my favourite part about bonfire night :D

Meggy and James (meggy's fiancee) being silly :) 
Me and Candice freezing, good thing I have a massive coat! LOL   
Me and little Jaydon playing with sparklers 
Me and James being super cool and managing to get James to take a photo :) 
Right I am probably going to go back to feeling sorry for myself with this retched cold but I'll be sure to write again soon :) 

Chat soon guys