Get Well Soon...

Hey Blogland, 

This is a really quick post I wanted to show you the really pretty flowers and cute bear that my Aunty and Uncle sent me. 

When I go to hospital I never expect to get anything off of anyone. I go too often and therefore think no-one should have to get me anything. But getting these in the post really was just the loveliest surprise and put a great big smile on my face :D

I'm going to attempt to go to work on Saturday and we'll see how it goes. I'm still not having any side-affects from the Flolan even after upping my dose yesterday, the stiffness and soreness is slowly going away I'm just going to have to be extra careful that I don't go banging into anybody and make sure i don't do any heavy lifting :). I'm back up at the hospital Next Friday as well and I'll make sure to keep you guys updated :-). So I'm officially on the mend Yay!

Talk soon guys  


Flolan Routine

Hey Blogland, 

Well the much anticipated (well in my mind LOL) new drug routine blog. As you all know I have recently acquired a new routine which I have had to work into my life. The Flolan routine has been added on top of all my other tablets that I already take if you want to see them here's the link. Although the method for this is a little more complicated than the Iloprost routine was I really do prefer it because I only have to do it once a day or twice depending on whether I pre-make my morning dose or not. I just do it before I take my morning and evening meds and it only takes 10-15mins which really is nothing. 

My Crono pump with my drug attached
 ^^^^ Above is my Crono pump it is the machine that delivers the medication to me constantly at a certain rate. I don't know the science behind the rates and stuff all I know is it does it's job. I keep it in a little pouch which goes around my hips or waist depending on what I'm wearing and it can also go around my neck as well on a lanyard if I'm wearing a dress :). 

Filter, Glycine solution, Flolan medication
 ^^^^ Above we have the medication itself. the one on the far right is the actual Flolan, it's in a powder form and has to be mixed and dissolved into the Glycine solution so that it's able to be administered to me through the line in my chest. After the medication has been mixed together it has to go through the filter (on the far left) which takes out any grainy bits as we don't want any of that going in me :). 
Sterile pack
 ^^^^ This here is a Sterile pack. After prepping the surface you intend to work on you have to take out the sterile pack without touching it. It has to remain completely sterile or as sterile as possible. You then have to unfold it touching it as little as possible, or if you need to the side facing down, that won't be touching any of the equipment. In it there is a tray where you can put some of your tools if you wanted, some dressing bits if I needed any, a bin bag to put all the wrappings in and finally some sterile gloves these have to be put on after all the bits and bobs have been sterilely removed from their packaging (not touching them with your hands) and you have to put them on without touching the outside of the gloves. It took me a while to get the knack of it but I got it in the end :). 

Green needle, alcohol swap, line, 20ml syringe with white needle and 30ml syringe.
 ^^^^ Above are the main bits that are needed when making up the drug. You mix the Flolan into the Glycine solution into the 30ml syringe, then it's filtered into the 20ml syringe trying not to get any big air bubbles in the process, then it's attached to the line, then the pump, then you alcohol swap the end with the red bit coming out of the end and the bit  thats constantly attached to me and I attach it together. Ta Dah!

Alcohol surface wipes, Alcohol gel for hands, Sharps bin
 ^^^^Above are the wipes I have to prep my surface with although I have to also clean it in-between time as well and then there's the gel I have to use after having washed my hands as well. Then the sharps box is where I put anything that could possible contain the drug and obviously needles LOL.

Generally what it looks like when I've got it all set up (this is for making two doses)
These are the extras:- Dressing, Chloro prep, BDQ connector and biopatch. 
Okay guys so above are the little extras that have to be changed once a week but I'm doing most twice a week because I'm paranoid LOL. The dressing is a clear dressing which goes over my line site and is water proof so it doesn't allow any moisture to get to my line site and let any infection in. The Chloro prep is a little stick that before you put the new dressing on you squeeze out the liquid thats in it with the little handles you can see and you wipe it around the line site incase any little germies may have gotten in. The Biopatch goes around the line and I think (don't quote me on it) it contains some medicine type stuff in it to keep infection away from the line and apparently from what I'm told it has reduced infection by something like 30% in the people they originally tested it on which I'm all for if it reduces infection :D. The BDQ connector is a bit of a mystery to me, I think (once again don't quote me on it) it's another thing to reduce infection. It attaches to the line that is on me permanently, I don't really know what it does I just know I have to change it once a week LOL. 

Right and thats everything guys. I hope you enjoyed it I seem to have taken to it quite well, but I think thats because I needed it to be better than the Iloprost, doing that 7 times a day just wasn't an option anymore and I can't tell you how happy I am that this is 10 million times better. I know that it's probably making me a little OCD about being sterile but that can't be a totally bad thing it's preparing me for when I have my transplant and I have to be careful with germs then ;).

I also hope this prepares people who are going through similar things. I know it took me 10 months to decide to do this but for me it's the decision thats the hard part once I've made it everything else seems to fall into to place and I stick to that decision. So far it's been the right decision. Now all that would make it the perfect decision is for me to be feeling the benefits of the medication, but I think that will only happen when they start upping my dose some more. 

Right guys I'm sure my next post won't be so hospitally (real word? LOL) but hope you enjoy the little insight to my new routine :)

Talk soon guys  



What happens in a year when you are on the list?

Well for me it is this... 

- I started a blog
- I got put on a drug called Iloprost
- I got to meet more wonderful Vampire Diaries cast members.
- Went to Harry Potter Studios (Awesome)
- I turned 22 years old
- My new nephew was born
- My twin sister got engaged
- I got to be on t.v. and in the newspaper
- I got taken off of the drug Iloprost
- Have been in and out of hospital for regular clinic appointments
- I had surgery and was put on an intravenous drug called Flolan.

365 days have past...

...I have had no false alarms...

...but in that time 1,095 people will have died waiting... 

...thats 3 people a day... 

...something that does not need to happen...

...I am most fortunate that I was not one of them...  

...but the likelihood is I probably could be one of them this year.

 I think there are some who believe being on the list somehow changes your life in some profound way. It doesn't. Life goes on. We might go to hospital a bit more, and slow down a bit more, and maybe start to do less but the people around us still do the things they did before, they still live their lives, I just happen to look at my phone a lot more and it's just a year later which I'm very lucky to have had and everyday that passes is another step closer to transplant and another day of precious life.

The quote above is something that somedays I think I live by but feel like I should live by it alot more often especially considering how I love the rain so much ;)

Flolan Diaries: Hospital Day 6 & Home-time

Hey Blogland,

Well Yesterday was Day 6 of being in hospital. It was really boring to be honest, well most of it was, but then the day you leave always tends to be just one big wait. So yesterday I woke up and my Doctor came in around 8:00 for me to my Flolan, she just let me get on with it not really paying too much attention to me, she was just there if I needed her, which I didn't so yeyy! That meant that she felt okay to let me leave but then we had to get the go ahead from everyone else LOL. In the mean time whilst waiting to see everyone I managed to get to go for a shower I cannot tell how much I needed one they, wouldn't let me have one until I had this kind of like cling film stuff to put around my machine, which is more than understandable but I was hitting 5 days without a shower so I felt SO gross, but it was literally the best feeling ever! 

Then after my shower I saw the Pharmacist who went through everything drug related with me, like my warfarin because they had been fiddling about with that I needed to go get my INR checked out as soon as possible and that it would probably be a bit wonky for a while. Then I had to wait for Mike the social person who had to see that I was okay within myself to go home and that I wasn't just saying it LOL. Then my friend Rosie came to see me over the lunch, where there would be no doctors seeing me, and it was sooo Lovely to see someone from the real world because when you're in hospital you kind of get stuck with the same conversation that relates to hospital and obviously Rosie asked me how I was and what happen and all that type of stuff but we actually got to talk about real life things which was awesome. I know its everyone right to be a little curious but sometimes all you want is for someone to talk about something else and not the thing that you've already been thinking about for days, weeks and months. So that was so lovely of her to come especially because she got lost getting there and if you don;t know how to navigate Hammersmith it can be a bit of a maze LOL. 

After Rosie left another one of my doctors Fabreceo or if you know him Fab came to see me and just gave me the check over as well to make sure that I was okay and not feeling any side affects, ran through everything that I needed to know for when I got home, and he was happy that I was okay now all we had to do was wait for the head consultant to give the go ahead for me to leave which took a while because she was the only consultant yesterday so EVERYONE needed/wanted her. I was bored out my mind but got it I wasn't an emergency so I would have to wait :). 

Eventually Mike came back told me that my transport would be coming to get me and that I could go home. With all my drugs and equipment that I had to take home with me it actually looked like I was moving house because I had taken quite a lot in with me too so add on all the stuff they were giving me and it really, really did look like it. We had to have the transport guy, a nurse & my dad take it down stairs on trollies LOL. I think I will do a separate post on all the stuff I have and what it is and all that type of stuff because I think it's a bit too much for this post. 

But I eventually made it in last night and it was soooo nice to be home, I made sure I put everything away it only just fitted though mind you! LOL. Otherwise I wouldn't have been able to relax and then I flopped down in my bed after doing my first totally non supervised drug change :). BLISS!

It is actually 1 year today that I got put on the transplant list but I'll do a post on that tomorrow for you guys :)

The day I came out of Surgery 15-04-2013 
Thursday 18th April 2013 Looking loads better 
All the medication boxes I came home with taking up loads of my bedroom LOL
Me when I got changed last night, it looks like it's starting to heal :)
Sorry this post is late guys, but better late than never right? Thank-you for your lovely comments in my previous post and I will keep you all updated on my progress :D 

Talk soon guys 


Flolan Diaries: Hospital Day 5

Heya Blogland,

Well Since last night it was all drama in my Ward Bay. The really attention seeking  woman opposite my bed had a lot of visitors come and  visit her and when I say a lot I think it was like her entire family around 20 when I counted but more kept coming, bearing in mind that you’re only allowed two people at the bed at one time. Anyway they obviously wanted their privacy, which they are more than entitled too, the only problem is squeezing all those people behind the blue curtains is that it kind of becomes a sauna. So this woman started to overheat and just generally started to decline and all her family members were doing everything for her even moving her from side to side. All day the nurses had been making her do some things by herself because that’s all a part of recovery by having all her family members do everything for her it meant she got worse and then around 8o’clock something happened and the nurses got very mad because they couldn’t get around all the people to treat her so they tried to chuck them all out but as much as they tried there was at least four of the family members there at a time. They just didn’t seem to understand that by having so many people there they were in fact making her worse. So eventually she got sent to intensive care because this ward just didn’t have the man power to deal with her. In intensive care they have a nurse per patient whereas on the ward we are on they have 2 nurses for around every  6-8patients so they can’t attend to just one patients as they have other patients to see. But anyway that was my drama for the evening LOL. On to me…

So today I woke up at around 3:30 again to make sure that the nurse was prepping my drugs and then I had a pretty chilled out morning I discovered that I have gain the side affect ‘Jaw ache’ which isn’t so bad just a tad annoying and really hard to explain. They brought in a new lady to the bay who seems nice enough and I just pretty much practised, practised, practised on my little practise pump. I think I’m getting okay at it. Then at around 13:00 my PH team came up and told me I was allowed to go on the little pump at last. Yeyy. They left one of my doctors with me to observe me make up the solution, and obviously I made a bunch of mistakes but that is because I was being watched and get nervous when I’m being watched and start to second guess the things I’m doing. I’ve always been like it even at school like in Textiles I would be happily sewing along and then the teacher would come along and watch and I would just completely mess up LOL. But I think my doctor could tell that I was nervous with her watching me and I wouldn’t have ordinarily made those mistakes if I didn’t have my Dad, her, and my nurse all watching me at the same time LOL. She was satisfied with what I did though and she said she was happy for me to carry on doing it. She came and saw me do it again at 6 tonight because she just need to make sure that I’m doing everything correctly, and she’ll come again tomorrow morning and see me do it and hopefully if I’m feeling confident enough I should be able to go home tomorrow, but if I’m still feeling uneasy they’ll let me stay till Saturday or however long I need.


I think I will be fine once I get back home and all my drugs have got a place of their own and I know where it all is because at the moment it’s all in boxes and just a bit higgle-de-piggle-de.
I got moved from my ward bay though to the bay with the other two PH patients on which is nice and also means that I won’t need monitoring every half hour through the night and only every 4 hours. Because the room I was in had a 24/7 monitoring thing on the wall whereas the one I’m in now doesn’t which is awesome :).

Anyway I’m off and will keep you guys updated.  


Flolan Diaries:- Hospital Day 4

Hey Blogland,

Well last night, after I posted I my previous blogpost, I got to meet two really lovely ladies who are both on Flolan! They were so lovely and they both showed me how they made up their nightly dose of the meds. It was really interesting to see how it differs from person to person because one was more vigorous with the Glycine solution (The stuff you mix the flolan into) whereas the other was quite gental with it. It's actually made me even more positive about it :).

Urgh Last night they brought in a woman who has to be one of the most attention seeking people I have ever met in my life. She rang the bell literally every 5-10mins LITERALLY! I'm not in anyway exaggerating when I say this I really wanted to hit her in the morning because I had a awful nights sleep and to top it off they are still doing half hourly obs (Blood pressure) on me during the night so even if I managed to get to sleep I would get woken up the next minute anyway. They actually managed to change my drugs on time last night/this morning which was good but I made sure I  was awake and alert at around 3:50am to make sure they knew that they had to do it.

Basically the whole day I just practising making up the flolan after that. I managed to fit in a nap here and there but nothing substantial, but I have come to the conclusion that I won't be getting a good nights sleep till I get home and I'm in my own bed. Hopefully they will be sticking me on the small pump (chrono pump) tomorrow and then I depending on how confident or not I am depends when I will go home. They have been upping my dose every 12 hours and so far pretty much no side affects except for a little bit of nausea this morning but my Doctors just think that because they are upping it so fast but tonight I don't feel sick at all. Maybe it's the hospital breakfast that made me feel ill? LOL.

The only other thing that kind was wrong was that this morning I woke up with my entire right boob soaked in blood which was an uber lovely thing to wake up to LOL. We figured out that it was the blood thinning medication they put me on that they were injecting into my stomach a few hours before which I only knew because my lovely friend Anne had experienced something similar. So far this evening No blood which is great!

So things are moving along nicely hopefully I will be out of here in may 3 days if everything continues to go smoothly :).

Hope everyone in Blogland is well and I can't wait to get back to the real world :)


Flolan Diaries: Hospital Day 3

Hey Blogland,

Well today hasn't been too eventful I've been in one of those moods where I'm tired but not tired enough that I can sleep but then not awake enough that I can be bothered to do anything.

They started my Flolan via an IV pump last night whic was really annoying because I had literally just got to sleep ad then she came in and was like "Time to start your medication" and I was just like "Really?!" Last night there was quite alot of bleeding from my line site and I think I've decided I don't like the nurse I have at night because when I mentioned this to her and showed her she told me that it was perfectly normal and then when I woke up this morning it had spread quite alot and I showed her and she finally gave in and changed the dressing on it. I mentioned it to my doctor this afternoon and she didn't seem best pleased by it because the site is supposed to be sterile not drenched in blood. Anyway after that little fiasco I pretty much dosed for the rest of the day until my doctor came round at about 3:00pm.

At 3:00 I had to relearn how to set up the pump and the drug because I need to get the timing down to around 3 minutes after the drug as been exposed to the air I think it's going to be hard but I should be able to do it. At this point my doctor was about to go mad the nurses because they had given me a 24 hour dose when I actually need 12 hours doses and they had in fact told me it was supposed to be a 12 hour dose but they just forgot to change it, so under the glare of my doctor they changed it at 4:25 but that now means I have to wake up at like 3:30 to make sure they know that they have to prepare my drugs and whatnot. Apparently I have to get stricter with my nurses. I hate doing that though because I hate to feel like I'm bothering people. But like my doctor said it's my life and I have to be in control of it, so if the nurses aren't doing what they are suppose to be doing I have to tell them.

I did have a bit of a weird "can I really do this by myself?" moment earlier because it's so much to take in and I'm just worried that I will screw it up. And yesterday I had a bit of a panic moment because I had been finding it hard to swallow and cough and was so worried that it wouldn't go away but was totally reassured by some of my PH friends, I'm still finding a bit of pressure when I swallow but that has gone down as the day has gone on so yey.

Although right this second I have just discovered to mini blisters near the dressing on my neck which was pleasant... not lol I think it's the dressings they use my skin doesn't really agree with them.

I have yet to feel any side affects to the drugs but I'm not going to say thats not going to happen because it probably will at some point and I'm on a small dose as it is anyway so my body probably won't react till we get higher I don't want to have any bad reactions because they don't sound very nice at all :-/.  

All the stuff I've been practising with this afternoon :)
Right I am off to hopefully catch a bit of sleep while it's quiet and then I won't be so grumpy when I have to get up in the morning LOL. 

Stacie xoxo


Flolan Diaries: Hospital Day 2

Heya Blogland,

So prior to coming in here I had to stop taking my warfarin as I mentioned in my previous post so that my blood isn't too thick but they had to replace that with another drug that I cannot remember the name of but it begins with a T. Now when the lady was telling me this I was like "yeah, yeah, okay thats fine do what you need to do." Nowhere in this nurses explanation of this drug was there a point where she said "oh it'll need to be injected in your stomach" NOWHERE! If there had I'm sure I would have remembered and forced my dad to stay with me, but no there was not! So this lady comes in and says to me, are you ready to have your injection and me being me was like "excuse me? What injection?" Then  she continued to explain to me that this Warfarin substitute had to be injected luckily the nurse was quite nice and kindly explained to me that she injects it in the stomach because it's one of the fatiest part of the body so it wouldn't hurt so much. The problem with me is I don't like things I don't know, why do you think it took me 10 months to decide to go on the Flolan in the first place LOL. So I may have had a mini panic attack as soon as she started to prepare it but she calmly talked me through it and I may have over-reacted because it didn't hurt at all. The only bit that hurt was like 5minutes after she had injected it. I'm anticipating a large bruise because I'll have to have it done everyday I'm here. When I was 13 they actually used this drug but it was in my leg (not that I could remember that when they told me about the drug LOL) and I was there for about 7days and I had a bruise that covered half of my leg, so lets see how much of my stomach it'll cover LOL.

Right now I'm having to listen to the most irritating beeping noise coming from one of the women opposite me's machines, its driving me stark raving mad! I don't have a clue how the lady is sleeping through it I would have called someone by now and I want to but I don't want to interfere.

Right now as I write this 9:00am, I have been told I need to have my bloods done again because my INR (how fast your blood clots) was a little too high/higher than they would have liked so they need to redo my bloods today to see if it has gone down, and hopefully it will have, otherwise I get to be bored all day LOL.

14:00pm Sorry if this seems a bit mish mash guys (and for those that don't know what mish mash is, kind of in bit and pieces) I'm writing it as I go because otherwise I'll forget it and I want you guys to know as much as possible. I went into Theatre around 11:30 and to say I was a bit nervous is an understatement, I was so, so, so nervous never having been awake for a surgery before, although I had been told what to expect it never really calms you because you've still never experienced it. But the doctor/surgeon man came out and went through everything and tried to calm me a little which sort of worked. I went in and literally just kept concerntrating on my breathing, in, out, in, out, in, out it worked to an extent but then came the time to stick the Anaesthetic in and OMG that REALLY hurt! I'm kind of comparing it to the dentist but like 10 times more painful. The following two injections were okay still not nice but less painful than the first.

After the the injections it was just a lot of pulling and tugging and some odd sensations at times but other than that it was fine much less traumatic than I was expecting LOL. I suppose thats the good thing with me I always expect the worse then anything better is a bonus :D.

I was in there for around 30-40mins which didn't seem too long but they put the line in and I have 2 incisions I'll take a picture of it when I can as I can't really investigate it at the moment because my neck is so sore and stiff I can't really see it but when the soreness and stiffness goes down I'll be sure to investigate and take pictures for you guys :).

19:30pm So I have just been and had an X-ray done to make  sure that the line is in place properly and they will be starting the flolan soon, they are doing it on big machine first (one that I have to drag around with me) this is just while I get used how to work the pump that I'll be taking home with me. This is really annoying because it means I have to stay in either the hospital gowns or the one nighty I brought with me thats basically just a really long shirt LOL and the only reason they're letting me wear this one is because it buttons up in the front.

... And the lady in the bed opposite me just collapsed -_-...

i will keep you updated tomorrow :)


Flolan Diaries: Hospital Day 1

Heya Blogland,

Well as I write this I am sat on my bed in hospital. 

My current place of residence LOL
This morning was quite relaxed although it didn’t feel like a Sunday to me because generally I have never been to hospital on a Sunday and it kind of had the feel of a weekday, with my Mum sorting my dad out and doing a tonne of cleaning. I got to sleep in till 10am which was awesome because usually if I’m going to hospital I have to be up at the crack of dawn, so nice change there. I got to watch Sunday Brunch which is a TV programme which I love to watch on a Sunday, hilarious to watch. Then at 13:15 the transport guy arrived. The guy we got was one of those too much information kind of people who talk about ANYTHING even if it’s not appropriate but he was still funny and I’m not sure some of his conversational topics would have gone down so well with some other patients LOL.

I got to the hospital, it’s pretty much your standard generic 4 bed room on a ward of about 8 I think I haven’t investigated totally yet but that seems to be about right. They have NO wifi! Devastated but the good thing is being the organisational bee that I am I brought my mobile broadband stick which although not totally reliable seems to be doing okay at the moment  :-). This means I may or may not be able to an update everyday but you know me I’ll get them to you when I can :). I am currently sat on my bed opposite a lady who seems to have a lot of visitors but they’re all being quite loud but I can’t be nosey and find out what they are talking about because they aren’t speaking English :-( which is sad because when I’m bored I tend to listen to what the others are talking about. I know this probably isn’t one of my better traits but that’s what you do when you’re bored and in hospital LOL. There’s another lady who I think is Italian in the bed diagonal to me she’s fairly elderly but I don’t think they are people that I will end up talking to which is sad because I always like to talk to people while I’m in hospital but you know luck of the draw and all that.


The procedure as it stands at the moment may or may not happen tomorrow depending on how high/low my INR levels are (how fast your blood clots), if it’s too high they won’t be doing it tomorrow because otherwise I will be bleeding all over them which wouldn’t be ideal LOL. Hopefully it’ll be low enough because to be honest I can’t be bothered to spend a day in here just waiting for my blood to be thick enough if that makes sense?  Hey Ho what you gonna do? We’ll find out tomorrow I suppose.  

I think something positive that may come out of this trip is I may finally lose some weight because I’ve put on 3 kilos which is not great and hopefully I will lose them in time for Papworth in June :) and hospital food will certainly do that for you lol


Hospital Essentials

Heya Blogland, 

Right so before I go off to hospital I thought I would give you an idea of what I take to hospital when I have stays there. Obviously I can't take too much because I'm not taking a massive suitcase with me. Now I have estimated that my bathroom essentials will last me around 10-14days. Also I accidentally forgot to put my face wash in the picture but I will also be taking that with me.  

Bathroom essentials

So we have:
- my No.7 night and day face cream. (don't know how much as they were a gift) [daily routine which won't be stopped just because I'm going into hospital] 
- Dove Grapefruit and lemon grass roll on deodorant. (£1.10 from tesco) [Another daily routine LOL]
- John Frieda Brillant Brunette moisturiser shampoo and conditioner. (£1.99 each from Tesco) [I love this stuff have been using it for many years!]
- Soap and Glory body wash, Flake away & Body Butter. (3for2 £2.50 from Boots) [I have fallen for soap and glory and just love them, and love that they do them in mini bottles :D]
- Johnson's cleansing face wipes. (£3.00) [For the end of the day before I wash my face, because I'm not taking my face cleanser, and for when I feeling gross from the hospitalness lol]
- Travel toothbrush and toothpaste (£1.00 from Tesco) [Awesome little thing that will stay clean in my toiletries bag]
- Disposable Gillette razors (No idea how much I got them in a multi pack especially for hospital trips, usually I use a venus razor) [I take a few with me so I don't have extra things to remember when I come home because it would annoy me if I lost my Venus re-usable/refillable one]
- Toiletries bag (£1.00 from Tesco) [Cheap but efficient and a lot more roomy than it looks]

Make-up essentials

Now, generally as a rule whilst in hospital I don't wear very much make-up but I like to have some for when I leave because I hate to feel gross when I leave. Also if I feel a little bit down it always perks me up to do my face, but I'm not going to take my entire make-up collection with me to hospital so I only take a few little bits that will make me feel semi normal again :). 

I will also be taking my Tom Ford brow pencil but I forgot to take it out of the bag thats in the picture, so technically it's in the picture you just can't see it LOL.

Here we Have :- 
- Dragonfly compact mirror (Brought for £18.00 from Monsoon many years ago)
- Rimmel London APOCALIPS shade "Nova" (£4.99 from Boots) [P.S. LOVE THESE] 
- Maybelline Colour-stay lipstick, shade "electric Orange" (Link) [In case I'm feeling in a bold lip colour mood] 
- Vaseline & Nivea pearly shine lip care [Because the air-con in hospitals does serious damage to my lips]
- Benefits ERASE PASTE (Link) [Seriously loving this since I brought it!]
- Clinique super balanced make-up foundation, shade "beige chiffon" (£21.50 from Clinique.co.uk)
- Maxfactor 'The Falsies' (£7.99 from Boots.com) [Because it brightens up a face instantly]
- Stila Natural eyes Palette (Pretty sure this was £25.00 from Boots but it was a christmas present so don't quote me on it) [I won't want to do anything outrageous so just simple neutrals for me]
- Bourjois bronzer (Link) [This is just to give my face a boost because when I stay in hospital I tend to get that look that all patients get which is the pale pasty look of ill people as I call it so it'll hopefully brighten me up a bit :D]

This is a seriously basic make-up bag for me, because normally I would take lots of different alternatives, shades, mascaras, eyeliners etc. But I'm taking what I know works and will just brighten up my face when I'm feeling a little gross and hospitally (<-- real word? probably not lol). 

I hope you guys find this interesting or if you're going to hospital and don't know how to scale it down useful. Big tip take mini body wash and shampoo's etc. it saves ALOT of room trust me! Also I know if I run out I can always have my parents bring me more but all of the above should last me around 10-14days however if you wash your hair everyday (totally don't advise by the way as it destroys your hair!) mini's will not last so bigger bottles are probably recommended.

Also I have asked on my Facebook but I will ask it here, when I go in if they have wifi would you prefer daily updates or just one big one when I come out? 

Talk soon guys 


The Flolan Diaries... Looming

Hey Blogland. 
Well I seem to be having breathing issues at the moment, I have no idea why. There is nothing that should prompt the lack of ability to breathe. It’s starting to annoy me a basic human thing should be easy not so frigging hard the only time I don’t wear my oxygen at the moment is when I go to work on a Saturday, when I go out (which isn’t very often any more) and when I’m in the shower/bath. That’s it! 

I went to the GP's on Friday and they are going to get hold of Air Liquide (the guys who deal with my oxygen) to get me on portable oxygen because at the moment I've only got a concentrator which turns the air into oxygen and I've got a few big oxygen tanks which aren't exactly portable, they are only for if I'm spending a night somewhere. I did get a really nice GP this time though, because usually I get really awful ones who are horrid but I think this guy was new, he read up on me before I went in and even asked me a few questions and genuinely seemed interested rather than bored wanting to get me out of the room. I think I will ask for him if I ever have to go back to the GP :). 

Today I rang Hammersmith to see if they had heard back from the imaging department and they said that I had to be up there on the 14th by 4pm. I'm a little annoyed that they didn't ring me sooner because it's not like my parents can just get days off at the drop of a hat even with a terminally ill daughter, don't get me wrong it is easier, but my parents hate to mess the people that they work for around and they don't think it's fair on them to have to find replacements for them at such short notice. But the good thing about it being a Sunday I suppose is that traffic into London won't be so bad. 

I must admit the second he said that I would need to be there on the 14th my heart jumped out of my chest. Throughout my teenage years I always said that I would never have a procedure awake. I think this was because as a kid I didn't really understand the risks of anaesthesia on people with PH and I assumed that if they could do it on me as a child they could continue to do it on me as an adult. But unfortunately with age comes the truth from doctors, the only reason they put children under for procedures is because firstly they don't want to scare them and they know children won't stay still long enough for the procedure but by doing so they are adding extra risks on top what can sometimes be risky procedures. Children however heal faster than adults, I personally think it's because they don't really have a clue whats going on when they get put to sleep the magic milk, as I used to call it, would go in and then you'd wake up maybe a little worse for wear but that was it. So now as an adult I get it they will only put me to sleep if it's absolutely necessary, which is good I suppose because I don't react very well to anaesthesia, I get very sick, but there's still the part of me thats extremely frightened to have things going in me while I'm awake :-/

But I must be positive and I WILL be because this will hopefully improve my quality of life and maybe I'll be able to spend the day without my oxygen and only use it at night and be able to walk up the road. So I'm trying to think of all the things that will hopefully come out of a quite a scary experience. Plus who knows I might get my transplant before then...Right? LOL. 

Also I found that lovely quote above ^^^^ and figured it was quite apt for what I was talking about I'm very afraid of what I'm going to be having done but I want/need it more than I'm afraid of it and I think this could be applied lots more in life :D

Talk soon guys