29.7.12

Olympics, swealtering and general ramblings


Heya Blogland,

Well I said I would write a Blog every Sunday and I really will try and stick to it obviously this week it was a bit wonky but obviously Thursday was an important day and deserved a blog post all by itself. In preparation for this Sundays Blog I have pretty much been writing this for a few days so I can give you an accurate blog about my week I tend to forget things LOL… 

So here in the UK it is ridiculously hot (Now being Thursday LOL). Now most people would generally appreciate this change as normally we Brits pretty much get dreary and wet but this week we are getting temperatures hitting the 30 degrees Celsius which is soooo hot especially if you’re used to 10 degrees Celsius. Now I can appreciate the nice weather as much as the next girl but there are some of us Phers who really don’t do well in the hot weather, me being one of them. Some actually thrive in this weather, how I wish I was one of them. But for people like me, I find this weather very tiring and fairly debilitating. It pretty much restricts the little I can do already right down to pretty much nothing, and sleeping just does not happen Full Stop. Example it’s currently 2am as I write this. I think the reason is my heart rate feels like it doubles in this heat and without anything to occupy my thoughts whilst trying to get to sleep all my brain concentrates on is my heartbeat and therefore the less I sleep, the more tired I get then my chest seems to begin to hurt and this is when I have to whack out the old oxygen as that’s the only way I can guarantee any sleep. So far this week I’ve persevered and not used my oxygen but that’s because I’ve pretty much had nothing to do this week so I’ve been able to but if I can’t tomorrow (Thursday night as I write this) then I will have to resort to it as I have work on Saturday.

Oh yeah funny tidbit that I haven’t mentioned… I got my most recent assessment letter through from Papworth on Monday… I think… and I was reading through it and they had written my weight down to be 4 kilos heavier than I am, for those that don’t get kilos that’s 8.8pounds heavier than I am. Now normally this wouldn’t be an issue but being on the list you have to maintain a healthy BMI. Now mine is 26 at the moment so I do have a few more pounds to lose but so far I have lost over a stone to make sure I’m as healthy as I can be when I get my transplant. But I was on that phone in about 2 seconds flat getting them to change that number, I feel really bad because I may have come across quite blunt and frantic to the poor woman on the end of the phone but it is important. I sort of panicked because how big you are as well affects the organs you can receive because apparently as a rule donors tend to be small. I’m not massive or anything I’m fairly average but it is an important factor being on the list… you are always constantly aware of how much you weigh be it losing weight or putting it on. (I promise to tell you how much I weigh once I reach my target but for right now that’s all you get :P)

I watched the Olympic opening ceremony and OMG I was really impressed, I really thought with all the cock-ups that have happened with the whole G4S security stuff that they may not pull it off, but in my opinion they totally did. I thought it was really great how they depicted our history and how they displayed the industrial revolution, they could have maybe explained the silence for the world wars a bit better. I know being British we know what poppies signify but to some-one in another country they probably didn’t have a clue. I thought it was really intense and I bet all the people in the stadium probably had a better experience because of all the drums and getting the full effect of it. I wasn’t a big fan of the music bit with random teenagers texting each other, I don’t think I really ‘got it’, if that makes sense? I just thought it lasted for far too long. Rowan Atkinson was hilarious, I’ve never been the biggest Mr Bean fan but Mr Bean is quintessentially British and therefore deserved to be there in my eyes. Thought it was great that the queen did her bit and did well to play a part in the ceremony although I did cringe but laugh at the same time LOL.

The thing I was most impressed with and was pretty much in awe at was the lighting of the torch. I was soooooo impressed I was not expecting it and in all the Olympics I’ve ever watched it was the most unique lighting I’ve ever seen. I’m pleased that it wasn’t David Beckham who lit it because in my eyes he isn’t an Olympian and therefore why should he light it? I know he’s one of the best footballers in the world and an ambassador for the UK but in my mind that doesn’t not qualify him to light the torch. So I really loved that it was seven potential Olympians and the old Olympians were literally passing on the torch to the next generation. So loved it! Although there are other countries who are complaining that it was too British, well what do you expect?! We are British and the Olympics are being held here so shut up and accept the fact that we love our Britishness!

 I’m currently struggling with a migraine (Saturday) and wish it would go away I can usually deal with a normal headache but a migraine unfortunately makes me bed bound, I was meant to be going to the cinema with my sister and a few friends but right now that is just sooo not happening .
Got to see my friend Rosie yesterday and I got to meet her boyfriend Sam. It was nice to catch up with her because literally all my friends I don’t see for most of the year and then July comes and everyone comes home and then I have to fit them all in, it’s why I love July to October because I get to see everyone again. Almost all my friends have now graduated but they are now either going on to do masters like Rosie or are trying to become an adult and get a job in the Real world. We are pretty much all becoming adults, a little bit scary! LOL.

This week I keep hearing about different Cystic Fibrosis patients getting new lungs which is really 
great and I’m so happy for them because I know they need and deserve them, but is it really bad that I’m really jealous of them? I’m starting to sort of be like when is it my turn? Because technically I should be pretty easy to match. I have no antibodies. This is good because it means I can accept 100% of donors within my blood group. I’m blood group O negative which is one of the most common blood groups there is. Unfortunately as O is a universal blood group others can accept O but O’s can ONLY accept O. Is it really selfish of me to think O’s should get priority when an O organ becomes available? I’m probably a little prejudice when it comes to that though so my opinion is probably invalid. Then there’s the fact that I am young at only 21 which although really bad in one way is good in another because it means the likelihood of me surviving is a lot greater. Also in previous experience I have always bounced back really quickly when it comes to operations and the doctors know this. So I do have all these things going for me but unfortunately having a common blood type is bad because there are less organs available for the demand so in a way I kind of wish I had a slightly less common blood group then I probably wouldn’t be waiting for so long. Then there’s the fact that I need a heart beating donor because the heart CANNOT have stopped beating otherwise the organs will be rejected and the only way they can generally get heart and lungs together is when someone has had a random brain haemorrhage and their body is still live but their brain isn’t. So they are dead just their body hasn’t caught up if that makes sense.

It is really difficult to think that I’m waiting for someone to die so I can live but I think I’ve got it a bit easier than some because I’ve known about this since I was 11 so I’ve 10/11 years to get my head around it. A lot of people just get it sprung on them  and I’m not sure how I would cope if one day I was perfectly fine and well and then the next I was deteriorating and dying. So at least mine has been pretty gradual. Maybe not as gradual as say dying at 80 but more gradual than some people I know J. 

I have just got back (Sunday) from having a chilled out day at my Auntie Brie’s place which was really nice. As we were going over the Severn Bridge it started to rain and I was like Oh no, but it held off all day and we managed to have a really nice day out in the garden. Jaydon seemed to enjoy himself. Brie had got him a little golf set that he attempted to use as a golf set for the first few tries but then he kicked the balls round like mini footballs and started using the clubs as swords and swinging them around and generally hitting people with them LOL. We found out my cousin Mathew is expecting his first Baby which is awesome because his and Candy’s babies are pretty close together so they’ll grow up together which I really love the idea of, very exciting stuff.

I am going to get into some Olympics, just finished watching volleyball where the girls got through. Now watching the swimming where we cam eighth and now waiting to see Rebecca Adlington swim and try and catch a bit of the Gymnastics :-D.

Goodnight Blogland
Stacie xoxo

26.7.12

Celebrating Life


Heya Blogland,
Today was my Great Grandmothers Funeral, and although this is really sad and we will al miss her greatly it was in fact a really lovely day. It was a celebration of her life more than anything. The weather certainly was great for it. I don’t know why but I always have an image of funerals being held in the rain with loads of people holding black umbrellas. This is probably the amount of movies and TV shows I’ve watched and that’s the way it’s portrayed. 

I got to see a lot of my family who I haven’t seen in a while. It’s always lovely to see them. I even got to meet a few of the new arrivals who I have yet to me. Miss Savannah and Miss Robyn, my cousin’s newest little babies. I don’t know what it is with their genes but they both have the biggest and most beautiful eyes ever! 

There was a lot of family there that I have never met. It’s hard to know everyone in my family because it’s so large. They actually said there are 72 children, grandchildren, great grandchildren and great, great grandchildren of my Gran. That’s mental. But I got to meet a few of them today which was really nice because it’ll probably never happen again there isn’t ONE person that’s links everyone together now that Gran has gone. I don’t know how she managed to remember us all. I always, always got a Birthday card until the past few years, but like they said at the funeral she stopped sending them because postage is getting far too expensive, which I have to agree I don’t really know how they justify charging that much money for stamps! £7.00 for 12 first class is ridiculous (I only know this because I work at Smiths LOL). As I was saying I don’t know how she managed to remember everyone there’s like a million children, grand children and great grandchildren before me and Megan so I find that truly impressive.

It’s the first time I’ve seen my Dad’s side of the family since I got put on the list and a lot of people kept commenting on the fact that I look really well and they would never guess that I needed a Heart and Lung transplant. Which is really great for social situations like that because I don’t like people to be constantly on the look out for the ill girl. But Like I was saying to Becky (my cousin) today though sometimes it doesn’t pay to not look ill. You get dirty looks when you park in disabled spots, and people get impatient when you walk slowly because you can’t walk any faster, elderly people give you dirty looks because you won’t stand for them on a bus, because you actually stand for that long. People are pretty judgemental and therefore always assume, your lazy or ignorant but they have Noooo idea :-/.

After the wake me, mum, dad, Candice (Big sister), Warren (Candice’s FiancĂ©e), Jaydon (Nephew), Megan and James all went to Lyme Regis Beach which I haven’t been to in a few years. I was really enjoying it up until the point where we had to walk back up the beach. I completely forgot how hard it is to walk on sand and therefore severe chest pain ensued. It was not a fun experience but atleast I got an ice-cream out of it LOL.

Right that’s it from me today and I shall see you Sunday Blogland.
Stacie xoxo

23.7.12

Follow Phil

Hey Blogland, 

Okay, I know I said I wouldn't do a blog post till Sunday but I thought I would do a quick one to say can you all please go read my good Friend Phil's Blog, who is trying to become a Paramedic. He's a much better writer than I am, it's very good thus far and it promises to be a very interesting journey :-D. 


See you Sunday Blogland 
Stacie xoxo

22.7.12

Designated Sunday

Heya Blogland,

Well I've kind of decided to do one blog post a week, unless something important happens, or something I think is interesting happens LOL. So I think I'm going to allocate Sunday as my Blog day as generally it's seen as the end of the week for most people :o). 

Okay so this week besides the severe migraines it's actually been really good. Boredom is starting to kick in while I'm waiting to start my level 3 modules with the Open Uni. I'm doing a history degree for those that don't know although I have picked up a Politics module for my level 3 just to bring a bit of diversity to it, and I really enjoyed Politics at A-level, sooo logical choice in my mind. 

Today I went and saw Batman;- The Dark Knight Rises with Megan (Twin Sister) James (Megan's Boyfriend) and Steve (one of James' Bestfriends) . I thought it was really good, I've never really been into the whole Batman franchise thing I didn't see the first one until the second one came out and I didn't really enjoy them because to be honest the Joker kind of freaks me out. Clowns in general do, I don't even know why they are deemed appropriate for children they are just creepy :-/. But anyway I really enjoyed this one much more. The only thing was throughout the entire movie I was on edge. I know the likelihood of some-one shooting up a cinema in Swindon is probably zero, but I just couldn't help but look around every so often just to check. 

Hopefully my appointment for Hammersmith will come through the post tomorrow, I had to rearrange it because it's my Great Grandmothers funeral this week but I'm happy I'm getting a bit of a hospital break for a while although I do have to ring the INR (How fast my blood clots) people tomorrow for an appointment this week. I've been lucky and had 2 weeks off but I think the migraine this week probably suggests that my INR is high so it probably means I'll be going weekly for a while, Grrr LOL.

Right thats it from me this week blogland and unless something major happens during the week I will see you next Sunday :o)

Stacie xoxo

21.7.12

No headache but zero sleep...

Heya Blogland, 

Well I have just finished work and actually managed to get through it even though I only got about 1 hour sleep last night. I don't have a clue why I couldn't sleep but I was just lying there willing my body to go to sleep. It did not happen till about 3:30/3:45am and then I had to get up at 5am. I was surprisingly awake though. My theory is that becase I was sleeping soooo much during the week because of the marathon migraine my body sort of went on strike and was telling me I had more than my fair share during the week LOL. 

Customers were pretty nice today which is unusual. Working the morning shift you tend to get a 50/50 chance of the customers being either grumpy because it's far to early for any sane person to be out or their really nice because they are morning people. I had a few which were grumpy but you can't expect everyone to be in a good mood. Lets just say I have had way worse days before.

One guy did tick me off though. I had to go and check a price for him and when I came back I was rather out of breath because I don't like to keep customers waiting and he decided to comment on the fact that I was out of breath and totally implied that I was unfit and said "Do what I do, Camping!" Did I ask for your opinion? No! Thats like me going up to a morbidly obese person and saying "Do what I do, Move!" I would never do that. But other than him all my customers were perfectly nice. 

Kind of sad that I don't work Sundays anymore I really enjoyed Sundays but it was just getting far to much for me. Which is in fact really lame because it was only 3 hours and I did try and perservere with it but I was just calling in ill alot which isn't fair on them and my doctors also  advised against it as well. 

Right I'm off for a nap because my brain is about to shut down LOL

Write soon Blogland 
Stacie xoxo    

20.7.12

Oxygen

Heya Blogland, 

I have officially given in and am now on oxygen. Well I gave in last night at about 2:30am because I was not getting to sleep and my head was banging and elt like it was going to explode. I took a tonne of Calpol (The only thing I feel safe taking in relation to my other medication) but still nothing. So I gave in because my chest was starting to hurt and I could feel my heart pounding. I'm only  on 2.5litres a minute which seems to be keeping my headache/migraine at bay and my chest feels pretty relaxed. 
Oxygen time
I really try not to use my oxygen very much. I got given it back when I was 14 and I used it for a time but they problem was I became dependant on it and if I didn't have it one night for instance I would know about it the next day. So I decided that I would ween myself off of it and then only use it wehn necessary. I managed to not use it for 5 years. In the past 2 years I've had to use it more and more, when I have colds or just when I feel rough. It a way I can tell I'm getting worse because I knew I was stable for those 8/9years. Now I can feel myself getting worse. I can barely walk to the bus stop now which I could easily do 6months ago. Now my sister and dad are just my personal drivers LOL. 

I feel the same way about my Iloprost too but the only way I'm going to get off of the Iloprost is if I go on Flolan. For those that don't know Flolan is a line that goes directly into the heart and it works really well for some PH patients but the problem is because I have holes in my heart the likelihood of a stroke is more likely. Also the procedure scares me all my operations I've ever had have been asleep but this one wouldn't be. I know why they have to do them awake because ovbiously you can't keep doing repeat procedures on people asleep and not expect there to be reprocussions due to the general anathesia. So I'm really trying to perservere with the Iloprost and just hope it gets me to my transplant. If the time comes that I have to go on the Flolan I will and just pray I don't have a stroke but until that day gonna keep smiling :-) 

Well thats it from me I shall write soon Blogland
Stacie xoxo 

18.7.12

Headaches and migraines

Hey Blogland,

Well I'm having a not so great day today. I have a migraine which I've had for about 3 days now and it just won't seem to shift. The migraines are a result of the Sildenifil and Bosentan which both have the side affect of headaches. The doctors thought that the Sildenifil would maybe counteract the headaches from the Bosentan but it just seemed to make it worse. I slept in till 12:30pm when I was awoken by some stupid sales person at the door who even had the nerve to ask me if I had just woken up, it was midday? I had to bite my tongue, really not a great way to sell whatever you were selling. 

I've just taken a massive dose of Calpol to hopefully shift this massive migraine but luckily they seem to be a bit less painful at night because I'm not having to compete with sunlight and loud noises. The only problem I find is that if I go to sleep with a headache or migraine I will 100% wake up with one so I'm trying to shift it before I go to sleep otherwise it's gonna be another day in bed. I may even have to resort to going on my oxygen if it's still here tomorrow. Thats a sure fire way of getting rid of a migraine. The only reason I haven't used it et is I hate to use my oxygen too much because if I do I find I become to dependant on it, so I find I need it more if I use it more. Therefore I only use it when I absolutley have to. The doctors used to have a go at me when I was younger because I was meant to be on it all night but they eventually came around to my way of thinking because it really made no difference, only when I'm really bad does it seem to have any affect. 

It's difficult to know whether the Iloprost is adding to the headaches because when I first started it, it seemed to help stop them, but now they've made their unwelcome return so I kind of wonder if they are adding to it or whether the Sildenifil and Bosentan and powering through. Unfortunatley I'm not allowed to take many pain killers which is a bad thing for me when I'm having a bad day but good in the long run because when I get my transplant the painkillers they put me on should have more affect and therefore I shouldn't be i much pain when I get it. Which is good because thats the bit I'm dreading being in pain. I'm not much of a masochist and therefore do not relish in the idea of being in pain.

I'm also dreading waking up with a tube down my throat, luckily I have been assured by Paul (my transplant consultant) that I will not remember that part. 

Anyway there enough of my moaning for one post and I shall write again soon 
Goodnight Blogland
Stacie xoxo  


First post

Hiya Blogland,

Well this is officially my first public post. I do have another blog that I do through the open university but I do try to keep that University related but ovbiously my health and general life stuff tends to seep into it. Well firstly the reason I have decided to do this blog is well I have been inspired by others who have waited for and got their transplants. I only came across these blogs because of Transplant week which was aimed at trying to raise peoples awareness about the lack of people actually registered to donate organs. This therefore lead to me discovering all these people in a whole other community whom I was not aware of.

My condition is called Pulmonary Hypertension and I got it as a result of the holes in my heart that I was born with. I was diagnosed when I was 11 years old and at that age, people my age as a rule usually weren't diagnosed with the condition as it tends to be misdiagnosed as asthma and other similar things. I was given the chance to go on a trial drug in children, called Bosentan, it was either that or transplant at 11. Now my entire life has been filled with hospital appointments and operations and we knew that it would all culminate in a transplant at some point the question was just when and how many organs. We decided to go for the trial drug and if it didn't work then we would consider transplant. Luckily I got referred to Great Ormand Street Hospital where I was swiftly taken through the process I had an operation where they inserted a tube into my Pulmonary artery to keep it open and I was put on Bosentan and Warfarin which made a remarkable difference.

For several years I managed to make it through with little to no problems, I had my regular visits and regular tests, when I hit 14 they put me on oxygen, but I was still pretty good as it goes for Pulmonary Hypertension patients as I only use it when I need it. It was when I went to college that things started to go down hill, stairs were becoming near impossible for me to walk up and walking had become more difficult than it had ever been. By this point I was nearing 18 and I had to be transferred to an adult hospital which ended up being Hammersmith hospital. Here they proceeded to put me on Sildenifil but for those not in the know this is Viagra, it dialates the blood vessels in the lungs to help me breathe. I continued to be at this state of okayness (for lack of a better term) untill I was 19.

I was continuing to get worse breathing walking and general day to day stuff. the doctors couldn't think of what to do the Sildenifil wasn't making a difference and due to financial restraints within the NHS putting me on other drugs just wasn't an option as triple therapy requires the patient to be on the transplant list. This is when transplant started was brought to the table back in May 2011. This wasn't a suprise to me, my parents or my sisters, we knew it was coming eventually and if I'm honest it was later than I thought it would be.

 At this point I was referred to Harefield for a double lung transplant assessment where I went through a torrent of tests. This however resulted in rejection because my heart is too damaged and would require major surgery at the same time as transplant and this would therefore severely reduce my chance of surviving the operation.

This meant I was to be transferred to Papworth where I would go through another assessment process for Heart and Lungs instead. Here I went through pretty much the same tests except this time I had to have a Endoscopy because I my voice posed a problem. It is very high and therefore indicates damaged vocal cords, which would actually stop me getting a transplant. Luckily my left vocal is just lazy and this therefore won't stop me from getting a transplant thankfully. They eventually said I was fine to go on the list after a bit of waiting, as they were waiting for scans to come through from Harefield but as of April 20th 2012 I was placed on the live transplant list where I have been waiting ever since.

If you made it through the blog post well done you the next one will be much shorter I promise, but I'll be glad to share my journey with you :o)

Stacie xoxo