So yesterday I had my second false alarm for my transplant, here's how it went...
So yesterday I had my second false alarm for my transplant, here's how it went...
Well I'm making a concious effort to blog more in my OU blog, I feel like I've neglected you lot somewhat and I never intended it.
So at the moment I'm thinking about quitting A326. I seriously am not enjoying it, it just isn't what I expected and I'm far more behind than I ever intended with it. So on Monday I will be ringing up the OU and quitting that module but I'll still be doing DD306 and it means I can dedicate more of my time to the rest of it and hopefully get my grade up. The in October I plan on starting A327 and doing DD101 and then that'll complete my degree and think this is much better and I don't know why I didn't think of it before.
For those of you that are wondering about my health, I am getting worse but it'll will continue to be that way and I have accepted that. The only thing we can do now is hope I get my call in time. It's been 10 months since I was added and I would definitley say quality of life is worse and being able to do things and all that has gone downhill, but we all knew it would and I try to make sure I remember that. Most of my days are spent sleeping now I sleep at least 18 hours a day now which is also affecting my studying but I really do just hope more brave people sign the register and talk to their families about what they want.
I really want to go into schools and educate teenagers about organ donation because I really feel like they don't know enough about it and if you target the kids then it's more likely to become the norm to talk about donating organs rather than a taboo subject that no-one wants to address because they want to avoid talking about death. So I'm going to get in contact with some schools in my area and see if they will let me go in and talk in an assembly or PSHE class with probably yr 10's and above and I really think this would help get people talking because parents probably wouldn't bring it up to their kids but kids would probably just blurt it out .
So guys I hope you are all doing fabulously and I wil write again soon
Well I was maybe on tv this week, and when I say maybe I definitley was LOL.
In January I was ontacted by the NSHBT (organ donation people) asking me whether I would like to participate in a campaign that would be happening within February, they had read my blog and thought I would be a good candidate and there aren't that many of us waiting for both heart and lungs so it would make for an interesting story especially seeing as how I'm so young.
So on Tuesday me and my sisters made our way down to London and got to stay in quite a nice hotel and had everything paid for us (it was awesome!) and we got driven everywhere. Then On Wednesday we got picked up in Philip Scofields car (I was like WHAT?!) and we made our way to daybreak where I got to meet McFly a seriously OMG moment for me lol.
I'm so proud of this campaign that ITV have engaged in and it really has helped from what I'm hearing 100,000 people have already added themselve to the donor register sine Monday which is just amazing!
Then later that evening I also featured on ITV WEST News and had the honor of being featured alongside Will Pope who was kind of the whole reason for the campaign in the first place .
I did a blog post on it on my other blog and it has the links to the actual clips so if you didn't see them and want to then pop on over there .
I hope everone is great in Blogland
Just a quick one I'm sooooooo behind on my work I'm not exaggerating either. Now I'm literally locking myself away for the week to get it done as it's the first week in I actually can't remember how long where I don't have a hospital stay or appointment to go to. I also need to get it done before the week of the 11th because thats like organ donation promotion week and I'm going to be UBER busy. Check out my blog guys if you wanna know what I'm up to :
Hope everyone is well in blogland and I'll try and be good and update more often
Go have a read it really is great news
Yesterday was supposed to be so good, but my friend who got her heart and lung transplant has come into a lot of complications in the surgery, she's still on bypass and they haven't been able to get the heart going as of yet, they had to leave her abdomen open last night because of a bleed they couldn't control due to the warfarin most of us PHers take but by leaving it over night it has given it a chance to become a better consistency. She's in surgery again now and hopefully once they've sorted the bleed they can then concertrate on the heart and lungs.
The good thing is shes alive and hopefully they will get her sorted
Well really good day today, firstly I managed to get my Politics essay in on time woop!
But most importantly A really good friend of mine and fellow PHer got her call at 4 o'clock this morning and is right this very second getting her shiny new heart and lungs! I'm sooooo pleased for her.
As pleased as I am for her I am slightly jealous but it has provided a little hope because you rarely hear of heart and lung transplants happening and there has only been ONE other this year so it gives me hope that I will get mine eventually I just have to last long enough .
It's sooo exciting though i feel a little bad for her though because she's gonna be in hospital for christmas but I suppose the heart and lungs is far more important than that anyway
Here's my latest blog post
well as promised this post is going to be far cheerier .
Woke up this morning far cheerier than I was last night, maybe it's sleep deprivation but I'm feeling much better!
Also I got some good news my friend who is waiting for a double lung transplant, she's had a AWFUL time at the moment, she's got pnemmonia, flu a cracked rib and a fractured wrist, her lung function is down to 12% and she has generally had a horrible time (she makes my life look like a walk in the park) well it seems like she's feeling a little better which I'm really pleased about because a week or so ago it did sort of look like it was the end of the road for her. Hopefully it will continue to get better. Thats the problem when you make friends with people on the list your almost guarenteed that 50% of them will die.
Atleast I'm on the mend I stilll look like someone ressembling a ghost and have attempted to counteract that lol. Hopefully I can get some work done and I'll feel even happier
Have a awesome day guys
well I'm worse... it sucks... i'm still tired... very little work has happened lol.
The CT scan showed nothing but it wasn't a total waste of time it managed to provide a good look into how my lungs are working so not all bad.
I'm currently on oxygen 24/7 more than 10minutes off of it results in my breathing becoming horribly laboured so just enought time to get changed into some different PJ's lol.
The oxygen man is coming tomorrow with extra long tubing so I can get around the house abit more so that I'm not stuck in my room all the time, he's bringing a mask as well so hopefully it'll be a bit more affective than the cannula because I currently have a cold and some sinus issues so it's not working wonderfully.
So pretty much sucks to be me at the moment, but I know people who are worse so I must stop complaining. Plus christmas is fast approaching so I'm hoping the excitment of that will disapate my current grumpy state.
I hope eveyone is having a better time in blogland and hopefull my next post will be cheerful
Well this is gonna be a strange one today.
The past few weeks several emails and a few encounters with strangers has told me that people are actually alot more religious than I thought they were and apparently being terminally ill and on the transplant list automatically means you believe in god.
Right I must first start off by saying I have nothing against anyone who does believe in a particualar god, religion, whatever, each to their own but I personally don't believe in any god, which is sad because I do tend to have a bitter outlook on this particular point.
But the point of the blog is that I have had emails from people who read my blog and people my dad talks to at work have seen me and stopped me and they ALL not just some have told me that "God will save me". Now I don't mind when someone says to me they'll light a candle for me or I'll be in their prayers because that is lovely and I really appreciate that but by saying to me God will save me in my mind is an utter lie.
I don't believe in God the only thing I do believe in is my doctors they will do their upmost for me.
I just wonder why everyone assumes when your dying that you automatically turn to relgion because I know I never have and I just find it unusual that people I don't know just assume that I do and I never know what to say to them because I don't want to offend them so always just do the silent head nod and smile, and the emails just have no replies unless I suddenly decide to believe in something other than medicine
anyway enough of my ramblings good night blogland
Well my A326 essay is gone woop. I'm not sure the last paragraph was very good but it was getting to the stage where I was just like "Urghhhh I just want you gone" but I'm hoping for a averagish score maybe 60 if I'm lucky.
But also yeyyy because I managed to go the whole day without my oxygen I wasn't doing much but the past week I've been out of breath doing nothing so it's a start. I've got bloods tomorrow which I'm doing without oxygen, my sister is giving me a lift on her way to work but I've got to get the bus back which is a bit daunting.
oooo in other news I don't know if you guys know or remember me posting about it but my mum got made redundant from her job on the camp base back in March and shes had a few on off jobs but nothing concrete for a while but my mamager asked if my mum was still looking for work ad I said kind of. So now my mum is working with me, well not technically because she works 9-6 mon-fri and I only work on the weekends. I just hope everyone is nice to her coz I know she's really nervous.
Well I'll probably blog about the amount of work I have to do later on in the week lol
See you later Blogland
Well as the title suggests I'm feeling a tonne more positive, which is great because I hate being down it's not to person I like to be.
I'm half way through my A326 essay which is great and that will either be finished later tonight or tomorrow morning.
I think the 24 hour oxygen is starting to do it's job because my chest pains seem to be dulling slightly which is probably the reason for my slightly improved mood. It's kind of bad in a way because all my symtoms will probably disappear just in time for my CT scan by which point they won't be able to find anything which would be just like me LOL. But if it's anything serious it'll still be there.
I'll be staying up late tonight watching the presidential results come in. Lets hope it's Obama. I don't care what other policies that Romney bloke has but anyone who even attempts to bring in "Legitimate rape" should never be allowed to take any kind of post in any government!
Hope your all well in blogland
I'm not sure I'm very keen on my DD306 tutor very much. I just got my result back from my first TMA and I got 58 which is perfectly average for me but he was really critical about everything I wrote I don't think even a little bit pleased him. If you read my blog regularly you'll know I write as I speak and in my essays I put alot of opinion in it. But I know that alot probably wasn't to his taste but I think there's a way to be critical without being mean.
I can take criticism I've been getting it throughout school, college and my previous modules but the way he words it just comes across mean. If he's the type of person who takes the point of view "cruel to be kind" that kind of tactic doesn't work for me, it doesn't motivate me it just makes me want to quit. Which I know is kind of cutting off my nose to spite my face but thats what it makes me want to do.
It seems I'm now going to dread each and every one of my DD306 TMA's
Hey guys here's my latest blog please go check it out and check out the links on it too
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