28.8.13

Bucket Lists?

Heya Blogland, 

Me looking extra special a few weeks ago lol 

So I'm sat here watching "A walk to remember" staring Mandy Moore it's a fairly old movie so some of you reading this might not have seen it but it was on BBC1 the other night and it is one of the few DVD's I don't own lol. So I recorded it. 

I have no idea why I watch this movie whenever it is on because it makes me cry every freaking time I do, but anyway getting to point of my pointless drivel. The main character who has cancer and is dying has this bucket list  of things she would like to do before she dies. Then I also come across a lot of transplant blogs that I follow and fair few of them have lists of things they would like to accomplish once they have the ability to be able to do so. 

I always wonder whether I should have a bucket list? I mean I have things I would like to do or should I say places I would like to go after my transplant but I never put pen to paper and written up a list of things I would like to do or milestones I would like to reach. For some reason in my mind I feel like that would be jinxing it. The moment I attempt to achieve the things on the list I just feel like life would decide then would be the time to pull the rug from right under me. 

Is this just me? Or does any-one else feel that the second you decide to do anything life decides to throw a spanner in the works? It's a bit like when I decide to do things just in life in general my PH decides that thats the day to give me chest pains or a migraine or just feel really awful in general. I will never let the fact that I'm waiting for a transplant completely rule my life but there is always this voice in the back of mind wondering whether just because I've decided to venture a little further away to do something like go to London shopping for instance or anything remotely different from my everyday routine, there is a part of me that thinks this will be the day that fate decides will be transplant day.

Do you know what my perfect transplant day would be? A Saturday just before I have to go to work and I can phone up work with no guilt or hesitation and say "I can't come in today, I'm having my transplant"      

Anyway I veered off course again, should I make a bucket list? Hmmmm it's just something I've wondered if I should do.
Chat soon Guys

26.8.13

I have something to confess...

Heya Blogland, 

So I have something to confess, what is it you ask, well I've started christmas shopping!

Don't shoot me, it is only a recent thing, in my house you have to start christmas shopping pretty damn early. We have so many family members who's birthdays are near christmas and then there's christmas day itself, it's just not feasible to start shopping in say November. I'm also a giver. I don't give people presents to get them back or give someone a present of a certain amount of money expecting the same amount of money to be spent in return. I give presents because I love seeing some-one I love get something they genuinely wanted and now that I have my nephews seeing the utter elation when Jaydon opens his presents is pure joy. Even if Jaydon only plays with the box of his toy that in itself makes me feel all happy inside. 

Although I've been collecting a few bits here and there for Megan's present (because hers is a very bits and bobs present this year) I hadn't really made much headway yet. My mum, sisters and I all made a very big start this weekend though and we are definitely in full swing, although I suspect my mother has been in full swing for a while LOL. 

I brought my nephews presents both birthday and christmas, Megan's christmas and birthday is pretty much done minus one little thing. Both my sisters fiancee's are done and I just have to focus on my mum, dad, older sister and a few friends now. So pretty big dent made I think?

I have also brought a potential dress for the Cosmo Blog awards but I'm finding it extremely difficult to know what to wear. The invitation said dress to impress, now I have some nice dresses that I love but some are too dressy and I don't want to turn up looking like a total and utter ninny but then I can't turn up in a semi casual dress either. Then there's the fact that most of the people going to this thing are kind of beauty/fashion related so how the hell do I wear something that can stand up with all these very fashion conscientious girls who probably also look amazing and are going to be super skinny too? It's extremely hard and I just know I'm going to end up buying about 10 dresses and taking them all to London and panic on the night LOL. Deary me what does one do? Hey Ho I suppose it's a good predicament to be in. :) 

Me and my yummy snow-cone while shopping,
ignore how awful I look I'm make-up less LOL.  
Ridiculous amount of shopping.



























Chat soon Guys

22.8.13

Weight...

Hey Blogland, 

source
So last year when I was put on the transplant list I was asked by my doctors to lose 10kilos and in normal people language thats 22 pounds. Now I battle with losing weight I'm actually useless at it, and it's made all the more difficult by the fact I can't exercise so any weight loss that I have is purely food related. 

I've done the extreme basically starve diet and trust me that one doesn't work because if you're a regular person you generally need food, I tried weight watchers and that worked to a certain extent but I get to a certain point and then I couldn't shift anymore because to shift anymore I would need exercise which I obviously couldn't. So about 2 months ago I had kind of given up hope of losing any weight and was just happy to make sure I didn't go over a particular weight bracket which was at my doctors "this is the most you can weigh" bracket lol.  

I promise this story is going somewhere... So when I was admitted to hospital back in July, they started to pump me full of lots of fluid and drugs and I was at quite a high weight at this point, not my highest but still quite high. They weighed me when I got to A&E and I was exactly what I thought I was and then later on when I was transferred to an actual ward they weighed me again and in those 6 hours I had gained 6kilos/12pounds. I was dumbfounded, how can some-one put 12 pounds on in just a few hours? It took a while to figure out that I was actually retaining water because there were no obvious signs that I was retaining water because I didn't have any swelling anywhere and there was no particular point on my body that showed signs of water retention. 

So after about a week in hospital and everyone being focused on getting my infection under control we then addressed my weight issue, which in my mind I was little more concerned about because by adding that 12 pounds I weighed way more than I should. The only thing we thought it could be was water retention so they stuck me on pretty low doses of Spironolactone and Furosimide and it worked wonders! 

In the space of 5 weeks I have lost 2 stone which has actually been helped along by my just watching what I'm eating, you know less crisps, less chocolate that type of thing, but the fact I've lost that much probably shows that I was retaining water before I was admitted to hospital and was one of the reasons that I was finding it really hard to lose weight. I am now actually 1 pound away from hitting the hospitals weight target, that they want me to reach, I personally would like to lose another 7 pounds as that would then give me a comfortable place to be :). 

I'm so unbelievably chuffed with losing the weight finally because it's something that weighs on my mind when I go to hospital appointments because I was always afraid they'd finally say "No Stacie, you weigh to much! You have to come off of the list" although this might sound like an exaggeration some people actually aren't allowed on the list if they weigh to little or too much because they need you to be within a certain weight range because it's just another factor that goes into finding a donor and unfortunately weighing too much just isn't an option.                      

20.8.13

Hospital free...

Heya Blogland,

So I went to Bristol on Friday just to have my stitches removed from my line as they had been in 3 weeks and needed removing and I thought that it was going to be my last hospital appointment for a while until my doctor noticed that my line didn't have a protective cuff on it, which simply just protects my line and stops it from twisting. Unfortunately most hospitals don't stock Groshong lines and Bristol only had baby ones so I had to go all the way to London yesterday just to have this cuff put on my line. It was annoying to have to spend 5+hours in a car for a 5 min appointment but I suppose it'll be worth it in the long run because it means the actual line won't get damaged etc.

While I was at Bristol however I was asked to take part in a study on patients with PH. It's a anxiety study, because they believe that patients with PH suffer from anxiety and/or stress more than the average person. I have been told that I suffer from anxiety and I do get anxious in certain situations but I think over the years I've managed to avoid getting to stressed and I try to let things just go over my head. So at least I've got one sorted :). But I told them I would take part in it I'm not sure exactly what it entails but the lady said she'll get in contact with me soon and they'll go through it with me. I am however hospital free (minus inr appointments because they don't really count as they take about 5 minutes) until October unless my transplant call would like to happen in the mean time, so massive yey for me :D. 

Yesterday after London Megan, my niece and I went to see "Percy Jackson and the Sea of monsters," it was what I describe as a good 'Sunday afternoon movie' I hope you know what I mean by that. I wouldn't say it was as good as the first movie but still worth a watch. 

Something I'm slightly annoyed by is when did it become okay to stare at people? And when I say stare I mean openly ogle! Yesterday I got back from London quite late so I didn't have enough time to pre-make my Flolan but being prepared I always take some with me wherever I go and a spare pump. So after Megan, my niece and I went to the cinema we went to pizza hut and I had to make up my Flolan there. Now I told our waitress that I would be doing my medication and that there would be needles and she was fine with it, so I start making it up and people were openly staring/ogling. Beyond rude and makes me feel ridiculously uncomfortable. I just wondered when it became okay to just openly stare/ogle people? 

Jordan (my niece) and Meggy
Also Voting is stil happening for the Cosmo Blog Awards so if you want to you can still vote the link is in my side bar or just below and I will talk to you guys soon :) 

15.8.13

Fresh New start...

Heya Blogland,

source
So I'm going to attempt to put my worries aside, well, sort of. I mean it would be reckless and stupid if I completely shoved aside my worries and fears because they are based on sound reasons. I'm going to be a lot more cautious from now on and not be afraid to go to A&E if I have to. Now it's not like I avoided going to A&E last time because I genuinely had no clue that I had the infection, but me as a person, I try to avoid hospitals as much as possible and if I think something is wrong with me I usually wait for it to pass or I try and lengthen it out until my next clinic appointment at either Hammersmith or Papworth so then I don't have any unnecessary hospital appointments in-between. I don't even take pain medication so I don't add extra medication to my already ridiculous list. That however is for my benefit because I don't self medicate when I get my transplant I'll respond nicely to their pain meds when I come round, so essentially that one will benefit me in the long run because I literally only take a spoonful of Calpol if I have a serious migraine. (for those not in the UK Calpol is a children's low dose medication) Anyway coming off of my tangent I will now go to A&E if I even have a niggling feeling that I have an infection like my temp is up and my obs are out of whack because I will now be checking them everyday just in case. 

But anyway moving on from "doom and gloom Stacie" and onto "not gonna let this get in my way Stacie". I very recently got my next uni module stuff through the post and it's the module I have been waiting to sink my teeth into because it is everything I love about history, that being World War One through World War Two and even onwards to the Cold War and that type of thing. I find history fascinating but for me it's all about the 20th Century. It's filled with it's horrors but it's so fascinating and I just cannot get enough! So thats a brand new horizon to look forward to and I'm also still waiting to get another module to come through not quite so interesting but I need to do it to complete my degree so it must be done. 

Now that September is upon us it definitely feels like a good time to just refresh and start over and just shake off the past month or so. For me September is time where you get to do that because in my mind it's still the start of the year. January will never be the start of the year for me because I always started school in September and in my,  still childish brain, September will forever remain the start of the year. You'd come back from the summer holidays, and although you never were, you could be a totally new person it was a fresh start;- New pencil cases, new notebooks, new bag, new school clothes, new shoes, new coat. Everything was brand new and fresh and September will always mean a new start to me and the fact that we are going into autumn also makes me giddy with excitement!

I got to see my very good friend Rosie today which was awesome and certainly made me feel like I was back on the road to normality we got to talk about normal everyday things like the fact that we are becoming old biddies as Rosie becomes 23 in one month and I follow suit in December. Also the guy serving us asked us if we had, had A-levels results today which was slightly hysterical to me because that was a good 4 years ago now but it's good to know me and Rosie can still pass for 18 year olds if we wanted to lol.  We ate lots of yummy pizza hut pizza  which is always a good thing! I also got my haircut which has made me feel great as it was becoming ridiculous. I had actually intended to get it cut back in July but obviously unforeseen circumstances and all that LOL.

I have also invested in Netflix in the vain hope of saving some money because instead of buying every DVD known to man I will just watch it on Netflix. I'm hoping this will curb my DVD addiction a little, so far I have managed to watch all 4 seasons of Heroes which I still love just a by the way and I have now moved onto Buffy the vampire slayer, which I actually watched while it was on but, because I wasn't a sit down and watch it every week watcher, have probably missed a fair few so I'm looking forward to seeing them all :).

This kind of turned into an update blog which I never intended it to be but hey ho I'll run with it lol. I'm off to Hospital tomorrow and hopefully that will be me done with hospitals for at least a month. I've just got to have the stitches taken out of my line site and just a general health overview to make sure I really am on the road to recovery and they'll probably want to take some blood cultures too just to make sure that there's no evil nasties lurking in my blood, which I pray to god there isn't!

So guys Voting also stops for Cosmo blog awards on the 31st so if you want to please vote for me for best lifestyle blog and I will love you forever. See you soon :)

12.8.13

Paranoid Freak...

Heya Blogland,

So I have officially become a paranoid freak. 

Seriously ever since I had that bloody infection and nearly died everything seems like it might be another infection. 

I'm checking my temperature about 4 times a day, I check my obs at least as many times to make sure my pulse it lower than 100bpm. That my oxygen is above 85% unless I've been walking. 

Then there's the fact that anytime I get a twinge where my line is I think "Oh no, it must be another infection". 

The thing is because I didn't get any symptoms that even suggested a infection until the day before I went into hospital any minute thing suggests an infection to me now. The thing is I'm soooo angry that I didn't get any signs or anything because I should have had a extremely high temperature which I got eventually the day before I went to hospital. I should have had oozing puss coming from my line which I actually had but it was hidden and couldn't be seen until they cut me open. I should have had a low blood pressure which I actually have but thats because my pills make me have a low blood pressure so how the hell am I supposed to tell the difference between my normal low BP and an infection low BP.

I know I'm complaining and I'm sorry but the problem is I really am paranoid and I'm worried that if I get another infection and don't catch it in time that next time I will actually die. This time I was lucky to get away with 5 weeks of antibiotics. I don't know if I've actually mentioned it but the infection I had was bad it actually went sepsis which for those that don't know is short for septicaemia.  If you search it up it doesn't make for great reading and I am very lucky we caught it when I did. The problem is all the signs of both infection and sepsis are already things I suffer from as side affects to PH and that there is why I'm so paranoid. 

How do you separate something that could kill you from something you already have? 

I thought I knew my body inside and out and right now I just don't.  

*                              *                              *                              *                              *                              *

So Last night after I wrote the above part of my post I woke up about 1am and I literally am becoming a paranoid freak. I woke up my chest hurt my heart was going 10 to the dozen and I was hot, really, really hot! So I got up and I took my pulse made sure my oxygen was okay and both were okay but my oxygen was down to about 83 so not really low but still lower than me or my docs like it to be so I went on my oxygen, my heart rate was 120 so quite high. I don't know why I'm being so paranoid this always used to happen when I had the line put in and even before I had the line put in. I think the problem I'm having is that I had this infection for weeks before I figured out that I had it and that's why it became sepsis, so now I'm so worried that I won't figure it out in time if I happen to get another infection.

It's a little bit worrying.


10.8.13

Strawberry Picking Saturday...

Hey Blogland, 

So today after I had my antibiotics my big sister rang up asking if any of us wanted to go strawberry picking with her and my oldest nephew Jaydon. I decided to tag along because one I'm a little bit in love with strawberries at the moment because my tastes buds are little bit out of sorts what with me being on all these antibiotics still, and strawberries are one of the few things that still taste the same. Also I'm trying to rebuild the strength in my legs and a walk round a few fields would do me some good. 

The place we went was really cute it did lots of different things, so you could pick strawberries raspberries, potatoes, carrots and a bunch of other vegetables and fruits. There was also a little farm bit where they keep goats, alpaca's, turkey's, horses and other animals which if you felt so inclined to could actually milk. 

They also had a little shop with lots of homemade jams and cream and lots of other cute farm things that you only ever find in farmers markets and places like that. My highlight of the day was however something completely unrelated to any of this really but my favourite ice-cream or should I say favourite Magnum ice-cream of all time is the Double Caramel Magnum. Now this ice-cream is a childhood favourite and I haven't had in years I don;t know what they did to it, whether it was a limited addition or whatever but whatever the case is I haven't seen it in a very long time. Then I happen across it in this little farm shop where I became a child again. It was so good classic dairy milk chocolate shell, gooey caramel layer, thin layer of dark chocolate and then yummy vanilla ice-cream. It's really hard to explain exactly what it is I love so much about it but it really is amazing!

Also some amazing news from transplant community today 2 people got their calls for new lungs one was Kirstie and she is 23 years old and it's actually her second double lung transplant. She went into chronic rejection and alot of other complicated issues that I can't even begin to comprehend but she was only given a few weeks left to live and it really is a miracle that they found a match for her and I'm so unbelievably happy for her! Then there was Katie who just tweeted not too long ago that the lungs were a go and she is a 14 year old girl who has been waiting for quite a while and I'm so happy for her too. It's been a good day for the transplant community. I felt like for a while it's been a bit doom and gloom but this has perked me right up :) So hopefully their transplants will go smoothly and they'll both be on the road to recovery very soon :) 

Here's a few pictures I took from the day :) 

Jaydon with his empty basket  
Strawberry time 
Excited strawberry times! 
Sneakily eating some on the way round :) 
Being a little bossy :)
Mummy helping :)
Starting to get heavy
LOL
Yumm
Ice-cream time!
Feeding the rather friendly goats 

2.8.13

Dust yourself off and try again...

Hey Blogland, 

Source
So I've been home a few days now and it feels so good to just be able to sit on my sofa, my bed, at my desk just to be around my things feels amazing. So far the traipsing to and from hospital hasn't been too much of a hassle. My twin sisters Fiancee is being extremely kind and has offered to drive when my sisters can't as he has 2 weeks off of work. I feel awful about that because he really hates hospital and it's not exactly what some-one wants to be doing on their days off but I really do appreciate it because I was more than happy to get the bus but my doctors were less than thrilled by the idea of me getting a bus whilst I currently still have a few tubes going in me and my exercise tolerance is pretty low at the moment. Although I am working on that I've done quite a bit of walking in the past two days, probably not a lot for a normal person but for me it's quite a bit. 

I got some news on my latest uni module result which I hadn't realised had come through whilst I was in hospital. I debated whether to write it down and tell anyone because by doing that it means it's real and I wasn't sure I wanted it to be yet. Unfortunately I need to redo my End of Module Assignment as I passed the main bulk of the course but I didn't pass the last assignment which was 50% of the overall grade so you HAD to pass it in order to pass the whole module. I kind of knew it was coming, I was so distracted when I was doing it and just was never in the mood to write it I probably didn't deserve to pass it.  Back in School something like this would have knocked me down hard because I have to be in control of everything and when I don't do well at something it really annoys me. Also for some reason when people meet me they have an impression that I'm smart, I'm not really sure why. I'm not stupid don't get me wrong but I've always been pretty average, the grades I get although average I work my ass off for and I'm proud of them but sometimes I get the impression that people expect me to be this outstanding student when in actual fact i'm as average joe as you can get. 

So I've decided not to let this get me down because it's not the end of the world and it can be rectified I just need to work a little bit harder and try not to let life get in the way so much and really focus! So I'm going to dust myself off and try again :) Which is kind of what my Picture Quote is about because I could let this get me down but I won't I'm grateful for whatever life throws at me and after this recent scare I appreciate just being able to be here to try again whether I succeed or fail, I will have tried, I will remain grateful for each and everyday that I get to try. 

On a side note it's August! How the hell did that happen?! I missed July entirely lol

1.8.13

Homeward Bound...

Heya Blogland, 

So I'M HOME!

I was actually home yesterday and I was going to write this blogpost yesterday but I was SO tired. You kind of forget how much you sleep whilst you are in hospital because there's really nothing else to do, and yesterday I didn't sleep at all during the day because I was just waiting to leave or most of the day and by the time I got home all I wanted to do was go to sleep. 

So a little update really after my little meltdown the other day things actually got better, I finally got people to talk to, two lovely women were moved into the same bay as me and although they were older than me I got to have a good old natter to them and you have no idea what that can do to just improve my mood and make the day go by a little faster. I also seemed to get better nurses after that point as well although there was one particular nurse who I'm debating making a complaint about because she was verging on negligent. She marked down that she had given me an injection, which I am 100% certain she did not! But because it had been marked down that she had given it to me the new nurse couldn't give it to me just in case, which I understand but it was annoying especially when I know I didn't get given it. Anyway enough of that rant. 

After my last blogpost we did find out that the infection guys were extremely adamant that I have at least 2 more weeks of intravenous antibiotics. To do this they ideally wanted me to stay in hospital for another 2 weeks, I however being the stubborn human being I am refused and told them if I wasn't out of there by Wednesday I was going to discharge myself. This may seem extreme to some but there was no way I could have stayed in hospital for another 2 weeks when I feel perfectly find, if I had been feeling dodgy or off or a little unwell then sure I would have stayed but being in hospital for a long time, and especially when I feel fine, turns me into someone horrible, I become irritable and I become downright miserable and I'm not surprised people who spend extended amounts of time in hospital suffer from depression. So the fact I had told my doctors they had till Wednesday kind of kicked their butts in gear and my doctors did everything they could to be able to find a way to get me home rather than stay in hospital for another 2 weeks. Annnnd because my doctors are awesome they did! 

They tried to do it where a district nurse would come out to my house and do it but because of the extremely high dose of antibiotic and because it's a IV apparently they didn't feel comfortable enough to  do it which was disappointing but they managed to convince my local hospital to do it. So for the next 2 weeks I have to go up to the hospital and have the IV. I know there are probably some people reading this thinking 'surely it would have been easier to stay in hospital to have it done?' Yes it is true that it probably would have been easier but I'm a great believer that people cannot get completely better whilst in hospital and I was at the point where I was as better as I was going to get. While I was there I wasn't moving nearly as much and my general condition had deteriorated and I now have to rebuild strength in my legs and recondition my body back to it's former strength which just couldn't happen whilst I was in hospital. So traipsing to and from hospital everyday should help to do that. Also there is a lot to be said for being around friends and family! Being in London I wouldn't have been able to see anyone maybe once a week if I was lucky and that isn't good for anyone it was really getting me down not seeing my family and my precious babies (my cats lol). 

Now I'm actually home it doesn't feel like I've been away for 3 weeks but I cannot even tell you how amazing my bed felt last night and I got a full uninterrupted nights sleep, the first in 3 weeks! 

Also the day before I left I got to meet a lovely lady who also had PH and it was really interesting to talk to her I wish she had been there from the beginning I probably wouldn't have been so bored or lonely but even in the day I got to talk to her I'm pleased I met her. 

Also something I hadn't met in any of my previous blogs is that a good friend and fellow Pher who got her transplant back in May,  Anne, really sadly passed away while I was in hospital. I actually got to visit her the day before I was admitted to hospital and we knew then how bad had got as her lungs had decided they did not want to work and unfortunately the doctors could do no more for her. Anne was a fighter till the end and I will miss speaking to her very much. I'm extremely mad at my body because with these hospital visits it means I cannot go to her funeral which I really wanted to attend. 

I'm going to leave you with a few photos that my sister saw fit to take in my incapacitated state in hospital so firstly excuse the fact that they were taken on my phone and also that I look horrific lol

...and I'm now off to hospital also :) 

In A&E
Being fed grapes by the nephew because thats obviously what you feed ill people!
Me waiting to go to the ambulance
Me in the Ambulance about to go to Hammersmith

Chat soon Guys