Friday, 27 December 2013

Happy Christmas!

Sorry I've been rather quiet over the Christmas period. I've been meditating, willing my body not to get ill this year and somehow I managed it! I've actually been so busy leading up to Christmas that a part of me is quite looking forward to the rest. As I think I mentioned I was going off to Swansea to see my boyfriends family as soon as my final assessment was done for university, which was the last of four due in within a week which was not pleasant at all! We pretty much just chilled out in Swansea, as we didn't want to be really busy and get myself ill for Christmas. Unfortunately James ended up with a cold for Christmas - who saw that coming?! 

Then as soon as I was back home I had a pacemaker check, which was much better than expected as the technician said that he'd be surprised if my pacemaker didn't last ten years which is awesome as I haven't had any of my pacemakers longer than 6 years and as this one is 6 years old now I was expecting for it to be needing to be changed pretty soon. So that's one worry off my mind because I heard they like to do it under local anaesthetic in adult hospitals and while I'd definitely prefer that to the terrible sickness I get with general anaesthetic, I'm pretty keen to delay my first experience of being awake during surgery, or surgery of any kind come to that! 

After that I was busy catching up with everyone I hadn't seen while I was working on my assessments at uni, including spending some quality time with my mum and enjoying the luxuries of home the biggest of which being the bath! Although obviously my mums cooking is probably the best thing about being home. 

I had a lovely Christmas and I was healthy!! Which is brilliant! I had a lovely Christmas Day with my mum and her side of the family and then I went to my dads on Boxing Day to see his side of the family. It was a good two days and I really enjoyed myself. I love Christmas so much and it's always nice to get together with the family. Even better when they come bearing gifts! I got so many lovely presents and I'm really grateful to all of family and my boyfriend for buying me such lovely things! I got a lovely bag from my mum that's covered in ring pulls from cans, it looks really cool and the proceeds go to good causes. I got the headphones I asked for, a Kurt Geiger bracelet I asked for, a lovely necklace that was a complete surprise and an awesome feather quill from my boyfriend, a little make up bag from my mum that has the exact same pattern on that our family sofa had when I was little, lots of nice warm things like gloves, socks, slippers and woolly tights, the usual ton weight of chocolate and fudge and lots of lovely smelly stuff for the bath and shower and some lush goodies! (On that note: How good does Lush's snow fairy smell? Blimey I've heard people go on about it but boy does it smell good, it's like cotton candy heaven!) And I've got a topshop gift card to enjoy spending in the new year as well which is nice as I don't have much disposable income for new clothes these days.

I had problems with my chest as usual over Christmas but nothing too bad, mostly just because of the lack of sleep from all the excitement! Definitely looking forward to a nice rest. I don't have any plans over the next week other than to relax so I'm going to enjoy that, spend some time with my mum and chill out catching up with all the Christmas television I missed while I was busy being sociable.

I hope everyone had a brilliant Christmas and was healthy too! 

Monday, 9 December 2013


Well let's just say the morphine patches didn't work out for me. I honestly don't think I've felt that ill in a very long time. I was completely drugged up, but not in a good way, I barely had the patch on 18 hours and I was so dizzy and weak I struggled to stand up. I ended up in A&E because I hadn't eaten or drunk anything for 48hours and anything I had managed to drink I'd thrown up. It really wasn't very nice. It's put me off trying any other kind of slow release morphine. Or anything that takes two days to wear off. I think I'd just rather deal with the pain forever than go through that again.
So I'm just going to deal with the pain for a while and I've got a follow up appointment with palliative care the week before Christmas so I'll discuss any other kinds of pain management then but not surprisingly I'm feeling really put off at the moment.

This past week I've been really busy doing all my work for uni. I had two 2,500 word essays and one 2,500 word portfolio to do for this week. I had a Writing for Young People essay in today, which was a close reading of a couple of children's books and I think I'm going to do pretty well in that. I managed to link in a bit of child psychology so hopefully I'll get some brownie points for good research. The other two things are due in on Wednesday, I've just got a conclusion to do and when I get one of my portfolio pieces back I'll have to do all the corrections before I give it in.

Then on Thursday I'm off to Swansea to see my boyfriend's family, finish up some Christmas shopping and have a nice Christmas present wrapping session as we obviously need to give each other our presents before I go back to my hometown to spend some time with my family. I just can't wait for all my work to be done and submitted so I can relax and enjoy Christmas! I can't really do many Christmassy things at the moment because of all the work I've had to do. So I'm looking forward to the end of this week!
Christmas is my favourite time of year and as I was ill for the last two Christmases, I'm ready for a really good healthy Christmas this year!

Thursday, 21 November 2013

Feeling Sentimental

Today is the 2 year anniversary of my lung haemorrhage. My lung haemorrhage was the point at which things started going wrong for me. You've heard the story. I was a dance student and then I couldn't do anything. It sounds like a Hollywood movie. I don't why I remember these dates when I can barely keep track of my friends' birthdays. I guess my brain is clinging to the moment it all went wrong. And when things go wrong as dramatically as a haemorrhage I guess it's normal to remember them. 

I'm not an expert but I do think traumas tend to be more mentally destructive than they are physically. It was such a horrible experience that it's odd now to look back on it because I know there was a time where I remembered every unpleasant detail and now there are only fragments of memories. It's not like I want to remember the horrible things, and my brain does tend to forget them, but I feel like I must remember it. Firstly because it reminds me how lucky I am to be alive and that's a feeling I want to cherish because it influences every choice I make in my life. A little awareness of your own mortality can be a good thing in very small quantities. I also feel like these memories, although not pleasant, are a part of me, part of who I am and I'd love to find a way of remembering them without having to think about them. I want to avoid that horrible period between tiredness and unconsciousness where your brain decides now is a good moment to think about all the silly things you've done and all the bad things that have happened to you. But I want to keep the memories because they're a big part of my life. I don't want to shut out bad things because they make me who I am and if I forget them then I haven't let them mold me.

I think there are advantages to not blocking out bad memories. It's strange that I remember so little of the operations I had throughout my childhood. Of even the pulmonary embolism I had when I was 16. The problem with memory is it's selective and usually worse at selecting things when you aren't sleeping. Everything was a blur even as I was experiencing it so now all I can see is fog and the things too awful to forget. I think if I could remember more of the relaxing time, the sitting around watching tv, the lovely nurses, it'd feel less like a trauma. 

I'd also like to remember these things because I am a writer and I'm very creative and I think it's the things that have happened to me that had made me like that. So apart from anything else these things make pretty good writing material. I would like to write an autobiography one day too and the fact that I can't remember much is a bit of an issue. 

I wouldn't change a thing about my life and I think my brain is going against me here by letting me forget the things that are important. But I can't complain. It's done a pretty good job at dealing with all the trauma that's been thrown at it over the years. If the only damage it's done is too my memory then that's pretty good going. 

But please brain, don't let me forget how lucky I am to be here. 

Tuesday, 12 November 2013


I'm sorry I haven't blogged in a while. My chest pain has been pretty constant and draining during the last few weeks and I haven't been up to doing much. When I have felt like writing I've had to get on with the four assignments I've got to submit in a months time for uni. They boasted for the first couple of weeks that they'd tried their hardest not to have all our assignments due in at once, but they've obviously failed quite miserably at that! I've been working on the 9,500 words of assignment and I've actually made pretty good headway at getting it done. I've finished one assignment, got the first draft done for another and started another, which I'm quite happy with because I don't need any more stress because that always makes chronic pain a lot harder to deal with. 

Today, I decided, to hell with it I'm going somewhere. After deciding not to go out all at for Halloween and firework night because they cold makes my chest exceptionally painful, I decided that the Christmas light switch on in Bath was something I should go to. And I'm so happy I did! My boyfriend and I had a nice lazy walk (I say walk in the loosest possible way as I was in my wheelchair but there's no word for that) around town, had a look in some shops and bought a warm hat to see me through the evening. Then we got into the warm and had coffee and a chat. Then braved the cold again for the main event. The light switch on, which this year starred Mary Berry along with a band and a gospel choir. Simply because we came at Milsom Street (where the event was) we ended up being allowed by security round the side of the stage without too much of a crowd and later the security even asked everyone to get out of the way so we could have a good view from behind the gates. We stood (again I'm using wrong word, I sat) by this really lovely woman who was also in a wheelchair and had the sweetest little 6 month old baby on her lap. We got a bit of press attention too, which I always find a bit odd as they wouldn't have looked twice at us if we weren't in wheelchairs but it's pretty cool still that I might end up with my picture in the local papers. 

The switch on show was really good, lots of Christmas songs to get everyone in the festive mood and then of course the highlight for everyone, Mary Berry! I love The Great British Bake Off and I love Mary Berry because she reminds me so much of my Gran. They were even both born in Bath and around the same age I think. My Gran is a massive fan of hers too. They're just both the sweetest women you can imagine. I think everyone would love to have Mary Berry as their grandmother. The best thing was that when she came down from the stage she walked towards us and started mingling with the crowd. Where we were was the only bit that wasn't fenced in so she was able to come right up to us and she shook my hand and asked me how I was and then my boyfriend asked if we could have a picture together and she said yes!!! I could barely contain how happy I was! My boyfriend managed to get a really good photo of us, which I will treasure for ever. It was just the prefect end to a lovely day. And I'm just so glad I decided to go out today because if I hadn't I wouldn't have had the lovely day I did. As it turned out my chest wasn't so bad in the cold, though you can see in the picture I'm pretty well wrapped up! But it was probably more to do with the excitement of seeing Mary Berry and having a lovely day that took my mind of the pain. It's hurting now as I lie in bed writing but I can have a swig of morphine now that I'm safely in bed and it doesn't matter if I fall asleep.

Before I start talking about what's happening with my chest pain, here is the photo: 

The press were also snapping like mad at this point so I might see this photo in one of the local papers too! 

I'll fill you in on what's happening with my chest, while I'm in the blogging mood. I went to the hospital to see my usual specialists but as usual they don't know anything. They seem pretty sure it's my pulmonary hypertension causing it but what the exact cause is remains a mystery. I always seem to be that person who just doesn't make sense at all! I go against pretty much everything ever written about heart disease and PH. To be honest I'm more concerned about pain relief and my palliative care doctor seems to have been a bit quiet for a while. Until this morning that is, when she suggested using a morphine patch. (As if I don't look enough of an addict as it is with my bag constantly full of syringes and tablets. It sure is going to look weird if I'm wearing what appears to be a nicotine patch and an oxygen cannula and I'm only 20 years old!) The liquid morphine isn't working out very well for me though. I took it at the beginning of the year for long periods and felt fine but this time I'm really feeling the drowsiness side effect, which is very frustrating. But the patch sounds like a good idea as it doesn't have the highs and lows of taking conventional forms of painkillers. Where you're in pain you take some, the pain is subdued and then the pain is back, which makes is the main reason it can become addictive and as pain management isn't as effective as slow release forms. (For anyone who is worried, my doctor told me it's virtually impossible to get addicted to morphine when you are using it for pain, it's when you take it when you have no pain that it effects a different part of the brain and it's then that addiction may be caused.) I don't know when this is going to happen but she said she wants to see me to discus other options so I'm not sure if these patches are going to get to me that fast. That is the most annoying thing about the healthcare system, everything takes a ridiculous amount of time. "Hello, I'm in constant pain here!", "so we'll see you in three weeks, okay?"

So I'm just waiting for things to be sorted at the moment but I'm getting out, which is good for my sanity, and I'm enjoying my uni work too. I'm feeling happy, which is the main thing. Just remember, life is for living, take every chance you have to go out there and let life give you the good stuff. Above all, learn to listen to your body, if it's telling you to rest, do it, if it's undecided, go out and have fun and see what it does to you. You don't know until you try, and maybe your body will give you a break. It did for me! 

Bath Christmas lights at Southgate shopping centre. 

Tuesday, 22 October 2013

Palliative Care Again

So I had an appointment with my palliative care doctor today to try and get some good pain killers for my chest pain. She didn't really know what the chest pain was but agreed that it was probably my pulmonary hypertension. Whether it's the effect if the pressures in my lungs or the effect of my lungs having to work harder. She did say it could be the iloprost but I'm not sure because the pain doesn't seem to get worse after I take it. She said it could be something to do with the stomach also because the pain is right at the bottom of my lungs so it could be something else. You have to be careful not to get fixated on the lung disease and just assume it's the lungs. I've had problems with my abdominal organs before now. 
She didn't get any tests done because I'm going up to Bristol early November and it's best not to have too many x-rays if you can avoid it. They aren't dangerous really, but when you've had at least two a year for the whole of your life, the radiation starts to mount up a bit. There's no point having one in Gloucester for them to do new ones in Bristol in less than three weeks. 
Anyway, she offered me a man made version of the oramorph, which tends to give people less side effects than the conventional form. I haven't tried it yet cause I have to drive back to Bath this afternoon and I don't want to risk it making me feel too drowsy to drive. There are lots of options if that doesn't work. It's just a case of finding the right painkiller for me. I'm glad I'm starting to get sorted on the pain killer front because I feel like my chest has got worse in the last few days. I'm hoping this new morphine is going to work. I'm falling a bit behind on my uni work. I think I'll have to spend tomorrow sending apology emails to all my tutors as I've missed a whole week of lectures now and I haven't recuperated at all. My palliative care doctor couldn't really help me on that apart from making sure I get a good night's sleep. Trouble is my pacemaker isn't very good at slowing my heart rate down enough to sleep. She said that was normal though so at least I feel less weird now. I've hallucinated whenever I've tried sleeping tablets so I'll just have to stick to camomile tea. 
I'll keep you posted on whether the new morphine does the trick.
Thanks for reading :) 

Thursday, 17 October 2013

Feeling Down

I got really down tonight. I had a plenary class at uni, which usually just involves a writer coming to talk about their work, give us tips about the industry and getting creative and things like that but today we had a graduate come in and talk about her career since leaving uni. She was aiming to be a writer and producer for big feature films but at the moment she was working on some films independently and getting into the industry by working on tv and film sets. She is a runner, which is basically just someone how organises all the backstage or behind the camera things. Now I would absolutely love to have that job. That would be one of my dream jobs. I've wanted to be a backstage theatre manager ever since I did some backstage work at one of the shows at my old dance school. I was only in one dance so I mostly did all the backstage stuff and it was really fun. You get all the rush of being a performer, running around getting everything organised but you just don't ever go on stage. It would be my perfect job, and I reckon I'd be really good at it too as I'm good at organising things. 

But the job involves a lot of running around. If someone isn't on the side of the stage at the right time, if a prop isn't there, you literally have to run around trying to find what you need. Depending on what your role is, you might have to go around all the changing rooms giving people the time they have until they need to be on stage. I don't think you could do it in a wheelchair because most theatres are very old, there are stairs everywhere and the corridors are narrow and usually half blocked with props and racks of costumes. I think holding down any kind of full time job is going to be near impossible. I'm hardly at uni 3 hours a day and I'm thoroughly exhausted. And it's too much to hope the an employer will be flexible about all the time off I'll have to have for hospital appointments and varrious illnesses and catastrophes that my life tends to contain. 

I don't know, maybe there is a way I could volunteer backstage at some kind of theatre because I think I'd enjoy it so much that I wouldn't care if I wasn't getting paid. I just don't like the thought of staying in all day, doing nothing and then wondering why I'm not getting any inspirations for my writing. 

It just got me feeling a bit down about what I can't do and that surprised me because I'm usually really positive. I guess everyone has those down days. Perhaps it was just that I wasn't expecting someone to come in and talk about the kinds of jobs I can't do because I'm doing a writing degree and however ill I am, I can sit in bed and write. I should just be happy that I'm good at writing and there's a good chance that I'll be able to make a career out of it, however small. But is it wrong to want more? 

I'm going to try and do something with my days when I finish university, even if it's just for fun, and maybe I could do some volunteering work at a theatre, or something similar. Because I hate the thought of sitting around all day trying to write. I want to do as much with my life as I possibly can while I'm still well enough to do things. I don't want to loose that drive. Of course I'll carry on writing, writing will be my main goal. But I need to do other things to feed my creativity and my drive. Virginia Woolf calls the mundane, everyday chores of life cotton wool. That's what I don't want. For my life to be full of cotton wool. Because no one wants to read about cotton wool. 

I've said cotton wool to many times now and it's gone weird on me. Cotton Wool. 

How Hospital Made Me Weird

Managed to get a few minutes to myself to brush up this post I started writing a few weeks ago. Enjoy and feel free to laugh at my strange ways! 

I'm into a bit of amateur self psychology. Every time I have a weird dream I try to figure out what part of my confused brain put the events together. But I think a lot of the weird things about me stem from things that happened to me in hospital. I'm not talking about mental breakdowns, just little quirks of my nature that will probably be amusing to read about. I thought this would be a good funny post anyway.

Perhaps the most obvious quirk of nature which originates from hospital is my fear of masks. I'm talking about the plastic party masks, ones that pretend to be a face. They just really creep me out. The more cartoony they are the worse they scare me, particularly when they cover the mouth and the mask has a really wide cartoon style smile on. However really realistic ones, like the goblin masks in Harry Potter don't bother me at all because they don't seem like masks so much. Anyway I think this came from the surgeon's masks as they cover the mouth and I think that's the thing about masks that creep me out. You wouldn't think masks come up in your life that much but it's quite surprising how much it does. I think I see a mask on tv or in someone's picture on Facebook on average about once a week. And Halloween is really not fun! I don't know when this fear came because I've not always had it, it seemed to just come out of nowhere at some point in my childhood but I'm sure surgeons are to blame. 

The next one is sort of a good one. I think because of the endless list of doctors and nurses that have seen me naked, I have no insecurities about my body at all. The only thing I don't like is that my leg hair grows insanely fast, but I could easily keep on top of it if I could be bothered. Considering I grew up dancing where everyone is really conscious of their weight, their size, their height and everything because it affects what kind of dancer you can be. To be ballet dancer you have to be around 5'6" in height, have long legs, a flat chest, high arched feet and all sorts of things like that, it's surprising that none of the body obsession rubbed off on me. I don't know if it's the amount of people seeing me naked and not making a big thing about it or just because I have bigger things to worry about. I suppose I can blame heart disease for the things that I could hate about my body, the fact that I'm really skinny, that I'm short (there are cases of identical twins where the child with CHD is about a foot shorter than the child without), that I have scars etc. But none of it bothers me at all. Perhaps it's more comforting to be able to blame it on something rather than just having to accept it. I'd hate to not be comfortable in my body. I'm really glad that I turned out this way. 

After constant consumption of calpol and other strawberry flavoured medicines, I now can't drink or eat anything that's strawberry flavoured. Worst are things that are really sugary like strawberry milkshakes. Tastes and smells have strong connections with memories. The smell of oxygen is another thing that makes me want to gag because of all the times I've felt ill and been given it as a child. They had to resort to tying it to my teddy when I was little in the hope that some of it would waft into my face. I don't mind the fresh oxygen that comes in tanks, that's only got a really subtle smell but the oxygen that comes from oxygen concentrators smells like a mixture of car exhaust fumes and melting plastic. Everyone I know who's used it said it's completely bearable, but I can't stand the smell at all.  Which is pretty annoying because I could do with being on oxygen quite a lot and ordering oxygen tanks is a massive pain because the oxygen company my gp uses is rubbish. But I'm thinking about seeing if my palliative care doctor could arrange a better system because my gp has tried all it can but the oxygen company are having none of it. 

I'm not sure if this is a good one or not. I never feel like I was a proper teenager. I had to grow up really quickly because just as I was turning a teenager was just when I was finding out a lot of things about my illness and my future. I went through a bit of a difficult year when I was about 13 when I found out everything, and I was bullied a bit at around the same time, so I had a bit of a down year but then after that was all sorted and I got my head around everything I felt a lot more grown up. It's like I did the whole teenage thing in one year. I guess it's a good thing because I felt like I was pretty happy as a teenager and I'm sure if you asked any adult what part of their life they'd want to skip it would probably be the teenage years. I think a big part of it is I've always been very aware of my own mortality, and I think the thing about the teenage years and university student age is you just don't really think about how much bad food you're eating, what smoking is doing to your lungs and what drinking is doing to your liver. Although I guess the fact that adults do all of those things means that that theory doesn't just apply to teenagers. I've always thought of myself as mature for my age. Perhaps my brain is trying to fit all my development into my life expectancy. By the time I'm 30 I'll be knitting surrounded by cats. 

This is probably the weirdest one. I really like order and being in a really controlled environment like a school. I always wanted to go to boarding school when I was little because it seems like a really safe place to be because you don't have to deal with the world much. I'm a bit of a hermit! It must be really unusual for a creative person to like order because creativity is so messy! I guess this is because I have a lot of decisions and problems do to with my health and I like the thought of not having to deal with it and just having someone just say right this is what's happening. Even though that obviously wouldn't work in practise. I'm not a natural leader, lets say. I'd make a good minion. 

The next one is quite annoying. It's that I can't get to sleep unless I'm in a room of perfect silence and darkness. I'm really fussy about the conditions in which I can sleep. I can't have a ticking clock in my room because that annoys me. I can only have the fan on if I wear ear plugs and I have to have it on a low setting because I hate my hair blowing into my face; I hate anything around my neck and face. I reckon this is because of all the nights I've spent in hospital, which is like sleeping outside how noisy it is. Especially when I was in the children's hospital where there are babies crying and toddlers screaming round every corner. Hospitals don't really value a good nights sleep. The nurses talk loudly in the corridors all night, they don't turn the lights out till 11 if you're lucky and then wake you up at six for blood tests and even if you don't need any tests they wake you up for breakfast not long after. I struggle to sleep in the day because obviously darkness is hard to find. I suppose spending a lot of time trying so sleep in a noisy, loud ward should have made it easier for me to sleep in a semi-dark quiet room. But unfortunately that didn't happen. 

I think this one is really understandable. I hate gruesome or violent films. I don't mind the odd thriller, the odd crime drama but those really gruesome films like the Saw franchise or films like that I can't stand at all. I'm sure this is because they're often really clinical, there's usually a surgeon's scalpel at hand and oxygen masks and hospital beds with straps and creepy things like that. Especially if it's a torture scene So obviously I'm not a massive fan of that. I don't really like the feeling of being freaked out by gory stuff. And hate seeing people hurt each other, even on film. It's just not my thing at all. I find it opens up a lot of unpleasant memories for me. Having tests you haven't had done before, doctors with a tray of needles, is pretty frightening and it's the same feeling that I get when I watch some mad guy brandishing needles and scalpels at some helpless 'patient'. So no, I'm not going to watch any gruesome films, thank you. (Saw is on our watch list for my Film Studies module this year! Help me!!!!!)  

Here's a nice one to finish on, it takes an awful lot to get me bored because of the endless hours I've spent in hospital, lying around for days on end and not doing much. I think this is partly my nature also, as my mum is an artist so she is exceptionally patient with her drawings. We always used to sit together and paint or draw, or do puzzles and things when I was recovering from surgery or illness. I always have a head full of things to do and relish the long periods of calm in which I can begin to make a start on everything I want to do. I'm a highly creative person too, which also helps. If I'm bored I'll look through my list of unfinished pieces of writing, my sewing box, my bookshelf, my craft drawer, my library of DVDs and I'll always find something interesting to do. Most creative people have had some kind of trauma in their lives, which kick starts their creativity. Certainly a lot of the successful ones have. Often it's an illness in their childhoods, or bouts of depression. Depression is a very popular one for writers, J. K. Rowling, F. Scott Fitzgerald, Tennessee Williams and Emily Dickinson all suffered with depression. While studying dance, I came across a lot of dancers who had had some kind of illness in their childhood, often this was the reason they began dancing in the first place. It's good that some good comes out of a bad thing, and it's obvious to me that having heart disease has made me who I am and I've never wished for a moment that was any different, even though of course I'd love to get rid of this illness, it's still a part of me. 

Tuesday, 8 October 2013


My apologies for the lack of posts recently. It's been pretty busy in my life recently. I moved into university a little over two weeks ago and then had to rush off to Papworth for an appointment with the transplant team. Not much to say about that. I had an exercise text on a bike but my blood pressure dropped quite low so they stopped the test before I really started flagging and they said they weren't going to attempt it again. So I'm pretty happy with that because last time I had a proper exercise test I ended up with chest pain for three months and I was worried that was going to happen again. I got my tissue typing results while I was there and they came back at 50%, which means I'm a match for 50% of the population as far as tissue type goes. I'm not sure if they've already factored in your blood type but my blood matches 50% of the population as well so I'm pretty happy with that. Obviously 100% would be preferable but as I've had blood transfusions and lots of surgeries, all of which boost your antibody count, I was fearing a much lower number. There are people who come back only being a match for 3%, which obviously puts your wait on the transplant list up.

While I was in Cambridge I stayed at another premier inn but this time we booked a disabled accessible room. That usually just means it's on the ground floor but in our premier inn they had completely changed the room to make it as accessible as possible. The room was bigger for a start so you could easily get around the room in a wheelchair if you were wheelchair bound and the bathroom had a sliding door, which is much easier to open in a wheelchair than conventional doors and there were hand rails all over the bathroom. The bed was low down so you could literally fall out of your wheelchair onto the bed. Even the hooks on the walls, the light switches and the peep hole was at wheelchair height. I've never come across anywhere so wheelchair friendly. The lengths they had gone to, to make sure it was accessible was really appreciated and I highly recommend staying there if you find, like me, that hotels are difficult to get around in a wheelchair.

So I've been at uni for the last two weeks now. Lectures started last week and the work load is pilling up fast. I'm getting quite exhausted from just getting up early and going to my lectures so I'm finding it hard to fit in all my work too. Luckily most of it is just reading and as I'm doing the writing for young people module, they're not very complicated books. But I really struggle to get creative writing done when I'm so tired and stressed out about work. One of my tutors is being a bit weird about giving us all these deadlines for our stories. We only had five days to write our first story. I really hate being forced into creativity. They told us for the whole of last year not to force it, just to do something that makes you feel creative and if something comes to you don't write it down straight away, let it stew. Writing a story isn't really something you can just sit down and wade through, like an essay or a report. I'm not sure if those lectures are going to turn out all that inspiring but hopefully I'm wrong. I'm really enjoying writing for young people anyway. If I remember rightly, I found it difficult at the beginning of last year too so hopefully once I get into the swing of things it'll be fine and I'll have a bit more energy. 

I'm currently getting some chest pain again, but it's a lot different from last time. It feels like a pulled muscle but it's a constant pain and it doesn't react to movement at all and it doesn't get stiff and sore in the mornings like pulled muscles do so I'm not sure what it is. I layed off the morphine for the first few days so I could feel what the pain is like so I could explain it to my doctors but now I've phoned my nurse I feel okay to take it. She recommended I did take it and to try oxygen too. There's no point being in pain and it might give the doctors more of an idea about what it is by the way it responds to morphine or oxygen. Hopefully it'll just pass in the next few days and won't end up being something big. 

That's about all really. I've got a few unfinished blog posts on the go so I should be able to post a few things even if I'm really busy at uni. Even so, it might be a bit quiet for a while, just while I get into time swing of things. 

Thanks for reading! 

Friday, 13 September 2013

Just a Quick One...

Just a quick post today to try and get you all to sign an online petition! There's been a few scary stories about this new capability for work test sick and disabled people now have to do in order to continue receiving employment and support allowance. Perhaps the most famous of these is the case of Linda who, after two heart and lung transplants, was told that she was fit for work following a twenty minute meeting with the private company ATOS the government have hired to carry out these tests. She was obviously extremely upset and frustrated and wrote to appeal the decision. She died nine days after her appeal was rejected. Plainly this woman was too ill to work. She was practically on her death bed. Naturally the government claims this was an isolated case but the press have sadly unearthed similar stories. 

This petition is mainly opposed to these new capability for work meetings. However, they are also looking for a system reform when it comes to this subject. They want sick and disabled people to be helped into work if possible not forced and threatened with the cutting on their benefits. While understanding that cuts need to be made, I don't think forcing disabled people into work is the answer. 

For more information and to sign the petition please copy and paste the below link into your browser.

Tuesday, 10 September 2013


So if you're in England you'll know that Strictly season has started! (In America you'll know it as Dancing with The Stars). And that means I'm even more obsessed with dancing than I am the rest of the year! As you may know if you've read my earlier posts, I used to be intent on a career in dancing. I've danced since I was four, I did GCSE dance and got a B in A Level dance as well doing ballet to intermediate foundation level at my dance school. I was also part of a contemporary dance group before I went to university to study dance. Even though I only managed two months of the course before I had my lung haemorrhage, I absolutely loved it and even though it didn't work out I still value the experience. 

I'm very glad also that I'm still able to enjoy watching dance. I could just as easily have never wanted to see another dance again. I can't deny however, that all I want to do after I've watched a good strictly show is get back in the dance studio but I usually feel okay once I've done a few pirouettes in the kitchen. I've been watching the US show Dance Moms quite a lot lately, it's a bit of a it's-so-bad-it's-good kind of show, but it just reminds me of dancing with my dance school when I was young. I'm glad Strictly is starting though because it's a thousand times better than Dance Moms which is edited and manufactured so that it's full of drama and I can't deny that it is a rubbish show. Anything to do with dance I love. I spend a lot of my time on YouTube looking at the Royal Ballet's channel where they put up some professional rehearsals from time to time and watching all sorts of weird and wonderful dances. I particularly love 'The Most Incredible Thing' which is a full length dance work with music from the pet shop boys. I'm really glad I can still enjoy dance without having to bust a lung getting up and dancing myself

I'm in denial that I can't dance anymore, though. I have a big box of leotards and ballet shoes, which I refuse to get rid of because some part of me is convinced that I'll dance again. I keep telling myself, well maybe I can teach one day, maybe I'll get better enough to do a bit of ballet. I was all set to get back to dancing as soon as soon as I recovered from my haemorrhage, even though I couldn't even get up the stairs in my house, but my doctors advised against it. But I'd love to start even a bit of ballet where I could focus on core strength and barre work rather than all the jumping around but while I'm at uni I haven't really got the energy and all the dance schools break for the summer. I will dance again one day though. I'm convinced of it. 

But for now, all hail Strictly Come Dancing! And curse the producers who decided there's going to be a three week break before the next show!

Monday, 2 September 2013

I'm Back!

I have returned from my trip to Oxford and I'm certainly pretty tired out! But I had a really good time! I'm pretty pleased with how my health kept up as well. I wasn't as tired out as I thought I'd be throughout the trip but when I got home I was absolutely exhausted! I could barely stay away long enough to have a bath and get into bed but I felt much better after a long sleep. Considering I wasn't sleeping brilliantly on the trip as the hotel was boiling, I'm very impressed with how I kept going, even if I'm probably going to be feeling rather tired out this week. It was definitely worth it.

The trip mainly consisted of trying out all the restaurants in Oxford and I absolutely stuffed myself full of food! If I didn't put on any weight, I never will. We ate out for lunch and diner nearly every day. We found this really lovely pub called 'The Eagle and Child' just round the corner from the Ashmolean Museum, which is apparently where J. R. R. Tolkien wrote Lord of The Rings, and they had some of his drawings on the walls. Lewis Carroll too is said to have eaten and wrote there. It was very quintessentially British, which is always nice. We had a really good curry on the last night, which was just up the road from the hotel. I'm fussy with curries because I like a korma but I often find them too sweet and not spicy enough but I like really creamy curries but this time I had a spicy starter so I was happy with my very rich, creamy curry. I don't feel like I've been properly hungry for ages so I'm looking forward to have a few salads, eating a bit healthier and going back to my grazing. 

The highlight of the trip was actually something we didn't plan at all. We were in the Ashmolean cafe, wondering what to do in the evening and thinking we couldn't possibly go out to dinner again and thought we'd check out the local theatres. The only thing on at the main theatre was the Rocky Horror Show and even though I love musicals I don't think it would be my cup of tea so we looked at the Oxford Playhouse and saw they had a Agatha Christie play on called 'Go Back for Murder'. Now me and my boyfriend love a good crime drama so we phoned up and got two tickets for £30 right at the front for that night. The play was really good too, probably the best play I've seen for a while. 

The Harry Potter tour was great too, it was really good to go again because there was a lot of things I'd forgotten and things I didn't notice before. Though it wasn't quite as magical as the first time it was still really good. I won't spoil anything for you in case you're planning on going because the magic is in the surprise! I splurged a bit at the gift shop, but you never know if you'll be able to go again and you can't buy a lot of the stuff anywhere else other than the Harry Potter resort in America. So I bought some charity books J. K. Rowling did for comic relief back in 2001. I don't know why I never bought them but I'd been meaning to get them ever since I got another charity book, 'The Tales of Beadle the Bard' for Christmas, which are wizard fairytales and are akin to our Grimm Tales. The two books I got from the tour are based on Hogwarts text books, which feature in the original Harry Potter books. 

'Fantastic Beasts and Where to Find Them' describes all the creatures in the world of Harry Potter including some annotations from Harry and Ron. 'Quidditch Through The Ages', which obviously from the title gives a bit more information about the game than the Harry Potter books did. This too is graffitied and has a library stamp in the front with a list of students who have taken out the book, which is a nice touch. They were £5 each. I probably could have got them cheaper online but as they're charity books I wanted to buy them from a proper shop so I know where the money is going. And brand new books are much nicer when they haven't been battered in the post. 

I also got a little notebook, because I love notebooks. I have loads of them lying around so one more can't hurt, right? The crest on the front is metal, the pleather is nice quality and the paper inside is really glossy so it's nice it's well made. 

I also got a soft toy of Scabbers, which is Ron's rat and ends up being a bit more than he seems (dum dum dah!). I just thought he was cute and he's even got a toe missing and little patches of fur pulled out like he's described in the books. And I got a deathly hallows keying, which you can see in the picture too. I also got some pins to go on the little bag I keep my iloprost in because I put all my heart charity pins on there so I thought I'd start collecting pins. Because I'm weird like that.

There were lots of nice little book shops we found in Oxford we found as we were walking around trying in vane to make ourselves hungry before lunch. I bought a good hospital boredom buster book from Waterstones on the first day, which is called 'Wreck My Journal' and it's like an adult activity book basically. On every page there's a different way to wreck the book. For example there some normal ones that you'll probably remember doing to your old school books like punching through the page with a pencil, colouring in a whole page and some really inventive ones like eating colourful candy and licking the page and using strands of your hair to make a pattern or picture. It seems like a really funny thing to do in hospital because people will probably think I'm really crazy just sat in bed licking my book. I haven't put in a picture because I think I'll do a before and after shot when I've finished it. I also bought a book of Samuel Taylor Couleridge's poetry, which I like because it's really dark; Couleridge suffered from depression. And I also got Virginia Woolf's 'The Waves' because beginning sounds like a story I'm writing at the moment so I though it might inspire me to write a bit more of it. I bought both of those from a £2 bookshop. I think they must be the end of printing lines because they're all brand new and unread. Now I need to finish Mrs Dalloway, which I've been reading for ages. Miss Woolf is quite heavy going! 

Think that's about it really. We wanted to go round a college but they were all closed and we didn't end up going down the river because my skin is reacting really badly to the sun at the moment. I've always got one or two attacks of heat rash but this year has been ridiculous. I'm going to see if my medication might have something to do with it as I got sun burnt the other day whilst sitting in the shade. Iloprost is the only thing new but it's not on the list of side effects. However there's probably not a great deal of data on the subject because very few people take it so that doesn't really rule it out as the cause. Maybe if it's due to photosensitivity there might be a different meditation they can give me rather than the hay fever tablets I've tried, which haven't done much for it. But for now I'm just trying not to scratch my sunburnt rash! 

Nothing much else to update you on. I'm going to see the Papworth transplant team in just under three weeks for the usual tests and things. Nothing that interesting I don't think. I haven't got any further in my decision making as to whether or not to have a transplant in the future. I'm just going to keep checking in with the transplant team and I'm not ruling anything out yet and hopefully it'll be a nice while before I have to worry about making that decision. 

I've got a few half written posts knocking about so no doubt they'll be up in the near future. Thanks for reading and have a nice day! 

Monday, 19 August 2013

Summer Trip

I always get a bit nervous planning a trip, paying for a hotel and tickets to something. I always seem to get ill at the wrong moment. When I was 7 I was all ready to go to Disney World in Florida with a charity that takes sick children for a once in a lifetime holiday, when I right on cue I got sick and couldn't go. Luckily they did the trip every year so I got to go the next year. I remember the woman who ran it being worried about going through trying to get me insured to fly again. As soon as an airline company hears you've got heart and lung disease they don't want to know! I think if they weren't a charity that wouldn't have managed it. If that had been a family holiday it would have been a disaster, no money back and no holiday! And at Christmas I was planning a trip to London for a bit of site seeing and going to see War Horse, but I came down with glandular fever and couldn't go, which I was really sad about. But I'm hopeful that I won't fall ill for this one. I'm not allowed.

So I'm planning a trip to Oxford at the end of August (not long now!) for five days with my boyfriend. I'm really excited to be going somewhere. I can't really go abroad because if I got ill, the last place I want to be is stuck in a foreign hospital with no one knowing my history, and as I've mentioned flying is difficult because of difficulty with insurance and problems with taking oxygen on planes. But luckily I don't really have a strong desire to travel, there are so many beautiful places in Britain to visit. Oxford being one them. We're going to spend four days in Oxford and then on the second day we're going to go to The Making of Harry Potter Studio Tour in Leavesdon, which is about an hours drive from Oxford. This will actually be my second time at the tour but it was so amazing the first time I went that I'm even more excited this time around and my boyfriend hasn't been so we just had to go. If you're a Harry Potter fan you definitely need to go, even if you wouldn't really consider yourself a 'fan' but want a good day out, it's perfect for that too. You won't believe the stuff they have there. They must have been planning this for a while because they've kept pretty much every prop and set they built for all of the films, and it's quite surprising the things they did actually build. One of the tour guides said they actually have more in storage that they're going to bring out later on to mix the tour up a bit. And if you're registered disabled, phone the ticket booking line and you'll get a carer in for free! They don't have to be your official carer but you do have to bring proof of Disability Living Allowance when you go. There's good accessibility there, it's all flat and there's ramps between some of the rooms but there aren't stairs anywhere so you're still in the midst of the crowd. There aren't many places to sit down though so if you have a wheelchair I'd advise bringing that. It's organised quite well so it didn't seem insanely busy, and it isn't difficult to get the wheelchair around. No less difficult that your average shop or museum anyway. 

We're going to decide what to do around Oxford when we know what's happening with the weather as some things like hiring a boat to go down the river or visiting the botanical gardens we can't do if it's raining. Hopefully my energy will last the whole five days. After feeling pretty good for a while I'm starting to get tired a lot again, but I still feel like I can push through it quite a lot. I find that there's tiredness and Tiredness, there's feeling a bit flat and lazy and there's not being able to do anything, a kind of fatigue that just takes over. When I feel like that, I don't get bored lying around because I know that's what my body needs. Thankfully I haven't felt like that for a while now, and I don't get it very often but I do have my days. But I think Oxford is going to be good. I think there's a certain amount of mind over matter when there's something you really want to do. 

So wish me luck! I have another appointment with the palliative care team this week so I'll probably do a post about that if anything interesting happens. Bye for now! 

Sunday, 11 August 2013

Weight Management

Sorry for the lack of posts lately, I've been enjoying my summer! But I've got a post on weight management if you find, like me, that putting on weight is a struggle. I know, feel free to hate the fact I'm skinny! But it's a problem. And being underweight is as dangerous, perhaps more so, than being overweight. 

I've been trying to gain weight for a while now and I got given the most useless pamphlet by the people at Papworth advising me how to gain weight, back in March. This is what they told me to do. 'Eat lots of processed food.' I guess I should just throw nutrition out of the window then, I'm sure saturated fats are the way to keep my heart healthy. 'Don't eat 5 portions of fruit and veg, limit to 2 portions because they don't contain enough fat or calories.' I never thought I'd see the day the NHS was telling me to not eat fruit and vegetables. 'Eat sugary snacks, and full sugar fizzy drinks.' And watch your teeth fall out as you go. 

Given that this leaflet was the most useless thing I've ever read, I decided to give some help to those in my position. As I said I'm trying to gain weight, but I'll be giving some advice to losing weight too because I know that's a problem other people too, especially when you're on the transplant list as all the risk factors go up once you go above or below a certain BMI. I don't pretend to be an expert in nutrition, quite the contrary, but I've picked up a lot of tips from tv programmes, reading and from my own experience so I hope it'll be useful. I think advice to people trying to gain weight is difficult to find and obviously the NHS aren't giving the most useful advice on this subject.

Firstly let me just say, crash diets don't work. The best way to manage your weight is to make small but permanent changes to your diet and lifestyle. In any case crash diets are not healthy. So here are my tips for managing your weight. 

Don't count calories of grams of fat - Your body doesn't absorb some fats, for example nuts have a high fat snd calorie content but the amount of fat and calories your stomach breaks down is minimal. What you should be doing to checking for saturated fat which your stomach breaks down easily and contributes to high cholesterol. This is what makes processed food so bad. When fatty food is broken down for you then all of it is absorbed by your body. For example when nuts are puréed into peanut butter, your body will probably absorb the number of calories written on the tin. So if your trying to gain weight eating ground nuts or peanut butter will let you put more weight on than eating whole nuts. For those trying to loose it, nuts are a very good snack because they fill you up and don't contain any of the nasty stuff in crisps or biscuits. Choose an unsalted almond, as they are particularly hard for your stomach to break down. Even if you are trying to put on weight, my advice would be to stay away from saturated fat also, because it's not good for you at all and adding bad habits like that to your diet is not a good idea. Keep your takeaways as a treat. 

Making the little changes - for those putting on weight - add butter to your potatoes and vegetables, switch to whole milk and drink a glass every other day, add more meat to your diet, minced meat is good because again it's been broken down so your body will absorb more of the calories. Switch crisps for biscuits, something like a digestive, nothing too sugary to protect those teeth. Eat a larger snack rather than grazing, some cheese and biscuits or a high calorie breakfast bar, or even buying bars designed to be high in calories for climbers or mountaineers. If you're especially worried about your weight and you have a condition that means it's dangerous for you such as heart disease you can get high calorie milkshakes on prescription which is a lot cheaper than buying them yourself and will pack an easy calorie drink. This is especially good if you have a busy lifestyle, but don't use shakes or bars to replace meals, these are simply to replace low calorie or unhealthy snacks. They do fill you up a bit so find a time where it isn't going to interfere with your meals or drink half a milkshake a day and keep the other half in the fridge and build up. Smoothies are good as they are very healthy and contain more calories and less nasties than coke. Choose a banana and mango smoothie or something that isn't too acidic to save your tooth enamel. You might want to consider switching to a pro enamel toothpaste if your going to be eating a lot more fruit than you usually do. This tip goes for those of you trying to lose weight too as smoothies are a good filler and will keep you fuller for longer, but remember to protect your teeth. I actually don't have a tooth enamel so I'm particularly careful about the acidity in my foods. Note that cheese and dairy products will neutralise the acidity in your mouth so cheese and apple is a good nutritious combo for those gaining weight.  

I don't have any particular tips for loosing weight as I don't have any personal experience as I have with trying to gain weight. But how to loose weight is a subject that has been written about extensively. Just eat things that are healthy and add some exercise into your daily routine. Don't skip meals or your body will panic and start storing everything you eat because it will think you are fasting and grazing will keep your metabolism working full out.

I hope this is useful to you in some way, or interesting at least. I found such a lack of advice for people trying to gain weight and I hope that people will find this at least more useful than that terrible NHS advice leaflet! 

Thursday, 25 July 2013

My inspirations

I'm doing a bit of a different blog post today. I felt like doing something nice and light as a nice change from all the transplant stuff and as I'm feeling really good at the moment, there's not much to say. So I'm going to do a post about my writing inspirations but they're also my life inspirations as well. I've done little notes of all my favourite quotes because I think that's a bit more visual and creative than a boring post of typed out quotes from various people.

I own a little notebook in which I write everything I read that inspires me, such as little quotes and poems that I really like and if I'm feeling down or I'm in hospital or something, I get it out and read through it. I find books really difficult to read when I'm ill or sleep deprived so a little book of quotes is a really good way of cheering myself up. So I hope this cheers you all up too. And hopefully you can read my writing.

Lovely little poem from Emily Dickinson, one of my favourite poets, is definitely one to read at times of crisis. 

I truly believe that everyone has a purpose on earth, everyone has something their meant to do and everything is connected. Everything happens for a reason. I guess some people would call that hope.

Virginia Woolf is a writer I feel I have a lot in common with, besides the whole mental illness thing. Though she's written a lot about her illness and I do tend to agree with a lot of her views. Her books are difficult to get through, I'm not going to lie, but they're worth the effort. I love this quote because I feel like I'm fighting death quite a lot in my life and this pretty much sums it up. Although I think when she says she will fling herself at death, she's actually talking about suicide but I like to think it's more about finding some bridge between accepting death and dying with a fight.

In my life it does seem as though I have to pay for a good day with a few bad ones. I don't like to think like that but I love this poem anyway. I particularly like the imagery of 'coffers heaped with tears.'

I think we have a certain amount of power over how we make our life. Even when it seems like a person has no control at all. It's like making the best of a bad situation. I like Milton's idea that we make our own heaven or our own hell. Paradise Lost is a classic that everyone should read, but I do advice investing in the York notes because it's not the easiest thing to read and understand. 

I really love this poem! I try not to think about dying because at the age of 20, it's something that should be as distant as the moon. But it's hard not to think, in that split second before the anaesthetic engulfs you, 'what if I don't ever wake up?' But I think this poem makes some sense out of the idea of death. It's hard to explain how this poem makes everything okay in my head. It gives me a brief glimpse of understanding and acceptance of death and I think if a writer can do that to a 20 year old who has been fighting death since the word go, he's probably one of the best writers you can find. 

Let's end on a note of dark humour. Because poetry doesn't always have to be heavy going and thought provoking. 

I hope you enjoyed my selection of favourite quotes and poems. Who doesn't like a nice inspirational quote eh? It's true, I'm a quote-a-holic!

Wednesday, 24 July 2013


I'm currently melting in the heat wave we're having in the uk at the moment. My lungs are definitely feeling the heat and humidity but generally I've been feeling really good. I feel like I have a lot of energy and I've been really busy making full use of it.

I recently got an article about my transplant experience in my local newspaper following National Transplant week. If you're interested in reading it you can find it online here,
I'm really happy to get something published, even if I did tell myself I wanted to get some stories out there before getting a career out of the fact that I'm ill. That just doesn't sit we'll with me, I want to be known for being a great writer not for being an ill writer. But I've got an insight above other writers my age so I suppose I should use it. It's a reason why I'll get published over someone else, and in the writing industry that's definitely something to use to your advantage. At least an autobiography is something to fall back on if I'm not getting anything published. 

I got my results back of my first year at uni and I managed a 2.1 in 3 modules but because I was ill quite a lot this year I missed one of the assessments so I've been busy writing an essay about my favourite authors and how they've influenced me that I unfortunately have to give in in hard copy at the uni so that's a little day trip for next week! And then when that's marked I'll get my result for the 4th module but I'm pretty confident I'll get a 2.1 for that as well because I got a first for the other assessment in the module so if have to flunk the essay pretty badly to not get a 2.1. So I'm really happy with my results seeing as I've been in and out of hospital a lot this year, had glandular fever and loads of chest pain. I'm hoping to get a few more firsts next year though. I feel like I have to get a first overall because my brother got a 2.1 so I've got to beat him! 

I've also been trying to start a story every week over the summer so I have lots of stories to work on when I'm back at uni because I've pretty much given in everything I've got for first year so I can't resubmit any of that. So I have to start a few more stories so I have a good bit of work to give in for my portfolios this year. I've also got an anthology of short stories for my short story module next year which I've been really enjoying. It's got short stories from all the famous writers in. I usually struggle to read things that I'm forced to read but I'm really enjoying this. It's got lots of advice for writers and stuff in which is really helpful and really inspires me to do some more writing. It's called 'Telling Stories' by Joyce Carol Oates if you're interested. 

I know I said the next post would be a part 2 of my life in operations but I've been really busy lately with all my other writing but I will get round to it, I promise!

Tuesday, 9 July 2013

Transplant Awareness Week and Updates

Right, this week is transplant awareness week so if you go to your nearest hospital outpatients you'll probably find a group of lovely people raising awareness of transplantation. It would mean the absolute world to me if just one of you signs up to the organ donor register. If you're in the UK you can simply click on the link on the right side of this blog. If you're not, head to google. All you have to do is fill out a form. If your uncomfortable with a particular organ being taken, I know eyes are a bit of a weird one if you believe in an afterlife, you can just uncheck that box and you can just give away what you want to. Then they'll send you a card that you can just pop in your wallet and then you can start telling everyone else to do the same!

The circumstances in which you need to die for your organs to be able to be donated are so particular that the amount of organs available to people like me is really low. You have to be proclaimed brain dead but be technically alive on a heart and lung monitor. There is no activity in the brain but blood is still being bumped around the body. This is how it needs to be for your organs to be donated to somebody. What is really important is for you to TELL YOUR FAMILY that you are joining the organ donor list. Putting it on Facebook or something is a great way to raise awareness and also let's your friends and family know. Talk about it properly with your next of kin because a great number of donors on the donor register never have their organs leave their body because, quite understandably, their families aren't comfortable with it. It's a very upsetting time and they're not thinking about people like me, they're thinking about their son, brother or friend and who can blame them for wanting their loved one's body to remain in tact. But given the chance to talk about it with you, know that that's what you want, they're going to be a lot more willing to give the transplant the go ahead. 

At a visit to the hospital yesterday I met a boy, a little older than one, that had recently had a heart transplant. He now looks like any other boy his age. The only clue to his ordeal is the top of his scar just visible above his shirt. He'll be extremely lucky to make it into adulthood but he's been given a healthy, happy childhood that he wouldn't have had otherwise. He spent the time leading up to the transplant on a heart and lung monitor waiting for a matching organ. Time is short and more donors are needed. So signing up and getting your friends and family to do the same will make a huge difference. If you're not suitable to donate perhaps consider looking at donating them to medical research. Obviously I respect your right to decide what happens to your organs when you die and if donating your organs is not for you you're free to make that choice but if you're happy to donate, please sign up! 

As I've said I'm being considered for a double lung and heart transplant. For this the heart and lungs have to come from the same person so it's just a little bit harder to get a healthy heart and lungs from the same person. They do very few heart and lung transplants and they're usually done on people with congenital heart and lung diseases, which are rare. There are currently around 16 people on the active list and they tend to do around 4 a year. And still people are dying on the list. So donors are still needed quite desperately. 

On to updates, Sorry I've not posted this week. I've been having a little holiday in Swansea, enjoying the lovely sun we've been having here in England. Which was made even more enjoyable by the fact that my chest pain has got so much better. Unfortunately I had a bit of a sickness bug as well but you can't win them all! I was feeling quite happy and had a bit more energy than normal, which always makes a massive difference to my life. I'm having a good week, I think. I just hope this heat isn't going to kill me this week because my lungs don't tend to cope very well and I tend to need quite a lot of sleep and it's too hot to sleep in at the moment.

I've also been busy moving out of university and am now officially home for the summer. It's going to be nice seeing everyone a bit more now I've got time on my hands. Best of all I can now write on my own terms without being pressured to whip things out for assessments. I've got a few things once go and it's really nice to have some relaxing writing time without looking at the word count every few minutes. 

I'll be finishing part two of my life in operations this week, so keep a look out for that. 
Now go and join the organ donor register!
Thanks for reading. 

Monday, 1 July 2013

Life in Operations - Part 1

I think I've had fourteen operations all in all, which includes quite a few catheters, which are the smallest of all the operations I've had, aside from ones not connected with my heart disease. I have no memory of my early operations and I remember little from the later ones, it's only the very recent ones I can recall properly. I think I've blanked a lot of it out. I guess that's probably a good thing. So I'm not going to be able to give you very precise ages or exactly what they did for the earlier ones. I will warn you, this is going to be a rather long post. Actually I might do it in 2 or 3 parts because it'll take me a while to write and there won't be many posts going up here. 

I think my first surgery was after I burst my eardrum, I had surgery in my ear to put a patch over the hole, which didn't give me back any hearing in that ear but keeps the inner ear and anything else behind the ear drum nice and safe. It's quite probable that I had some sort of catheter before this as a toddler, but I'm not sure. I was two years old when I had this surgery. 

The ear infection effectively saved my life. I was due to have my open heart surgery and because of the infection they didn't want to do it. A couple of days after my surgery was due to have taken place, my surgeon came under questioning after concerns were raised the doctor was taking too long to complete surgery and the suspected rise in death rates this may have resulted in. I've not looked a great deal into this story but I know that his death rates were found to be higher than you'd expect. In open heart surgery the patient has to be on a heart and lung machine so that the surgeon can operate on a non-beating heart. However the longer you are on the heart-lung machine the higher the risk of brain damage and death. So doing surgery quickly is very important.

I had a nurse that said that the surgeon who took over, performed the surgeries so quickly and efficiently that it was hard to believe the children had actually had open heart surgery when they arrived at intensive care. I neither believe nor disbelieve what I've read and been told but I'm sure that whatever panel of experts decided that the surgeon was guilty of 'professional misconduct' probably knew what they were doing and I am just grateful that I had the brilliant surgeon that I did have rather than him. Who knows, the surgery might have been as successful as it was, but given his death rates I'm glad I didn't have to take that risk.

The surgeon that performed both of my open heart surgeries was Dr Ash Pawade who unfortunately retired from surgery a good few years ago due the beginnings of a tremor in his hands. He is now saving the tigers in Africa. Quite an amazing man even after he stopped saving the lives of babies and children with heart disease. My first open heart surgery was to patch up the holes in my heart. It was as successful as anyone could have hoped. 

I don't remember any of this accept later on in hospital I remember bubble painting. This is a physiotherapy exercise, in which you pretty much just blow bubbles in paint and it's designed to get the lungs going. I guess as I was only two I probably wasn't so good at the walking yet, let alone just after open heart surgery, so it was a good, fun way to recover. 

Unfortunately, because my heart is completely back to front they could not be sure of where the sinus node was in my heart. The sinus node is what keeps the heart beating in a regular rhythm. They made my parents aware of the risk of damaging it before surgery and unfortunately they did end up damaging it. So the next surgery was to fit a pacemaker. My heart had been regularly stopping and starting at night so I needed a pacemaker to keep the rhythm going and to stop my heart cutting out. I was three when I had my first pacemaker fitted. When fitting the wires they have to stop the heart the same way they do in open heart surgery so that the wires can be screwed into the heart. They have to be really careful where they put them in. I saw surgery of this kind on a tv program. It was really weird to watch it and think, "Oh god that looks really dangerous! Oh god they did that to me!"

Then, I started having difficulty swallowing so I had scans done after I'd eaten a kind of radioactive meal so they could see what was happening. I remember going there with my mum and the room being really cold and full of weird scanning machines. I remember that the nurse had white hair. I don't remember any of the scans or eating the radioactive stuff but I remember them giving me a banana, which had been dipped in a really disgusting custard and I remember my mum breaking off the top and throwing it away so I could eat the bottom bit of the the banana without any custard. And I remember eating it on the way home, sat in my booster seat in the front of the car. It seems a really odd thing to remember amount everything else but it's a really clear memory for me.

Anyway, they found out that all my abdominal organs were a bit weird when they looked at the scans. My left atrial isomerism, which effects my heart and means that it has too left sides (see my what is CHD post for more details) also effected my abdominal organs too. I have two left kidneys, my liver has two left sides and everything else was just floating about because it wasn't all packed in neatly like in a normal body because the organs aren't normal shapes or sizes. So they were really worried that my intestines were going to knot themselves or get knotted around another organ. I had what's called a laparotomy in which they carried my heart surgery scar down to my belly button, went in and tacked everything down so that nothing would be floating around anymore. They also took out my appendix while they were there to save any trouble with it in the future.

Apart from the occasional catheter, which is where they put cameras and other equipment into a major vein, usually the groin or the neck, in a similar way to keyhole surgery, and they take lots of measurements inside the heart by traveling through a major vein or artery into the centre of the heart. It's a relatively routine surgery for someone with CHD and/or PH. As I say, part from the occasional catheter I had a quiet few years from the age of three to the age of eight. So this is probably a good place to end part one of my life in operations. The next part will be up soon and there might be another part after that, depending on how much I write. But seeing as I can actually remember having some of the later surgeries, I'll probably have more to say about them. 

I hope this was interesting. Probably a bit shocking for people who know me, or knew me before I was in a wheelchair and know how healthy I look and seem. Never judge a book by it's cover.

Thanks for reading. 

Thursday, 27 June 2013

Visit to Palliative Care

So before you all start freaking out that I'm dying let me just explain. Palliative care is not something that is just available to those who are getting to the end. Similarly morphine, which I am taking, is not solely used for those waiting to die. Palliative care is probably best known for their amazing work for people who are dying, including making them comfortable and allowing them to stay at home with the help of nurses. This is not what they do for the majority of their time. They are a service, which is better informed and organised than a gp, which concentrates on managing the symptoms of people with chronic illnesses or diseases. They also act as a support for those dealing with life threatening illnesses and diseases, something that gp surgeries are not equipped to deal with.

The reason I was referred to the palliative care team was to help manage my pain. As I've mentioned before, I've been having quite a lot of chest pain for the last couple of months. As for the cause, no one seems sure. There's quite a few possibilities but there aren't many ways they can prove any of their theories. So I probably won't ever know what's causing it. Perhaps how it reacts to certain painkillers might rule a few things out but as to a definite answer - I don't think I'm ever going to get one.

I think the trip to palliative care today was really useful. The woman I saw seemed to be really well educated about my condition. Which is really unusual, considering how rare my conditions are. She sounded like she had read my notes pretty well. She had a lot of ideas about the pain. She said it could be an inflammation on my sternum, which I had broken twice so that my surgeons could access my heart for my open heart surgeries. She said things like that take a long time to heal because there's no way of putting a brace or strapping up my chest to allow the bones to heal after they've been broken so things like inflammation and healing problems are common apparently. So that could be a reason. She thought it might be iloprost playing a part as well because she said the infusion tends to be painful so it could be that. I did have the same kind of pain in January before I started it, but I guess this could be a different pain that just feels really similar. So in the last few days I've gone from my actual specialist doctor having no clue at all, to a specialist nurse and a random doctor I've never met before coming up with loads of reasonable ideas and, more importantly, solutions to the actual pain, which is stopping me going out and doing what I want to do. 

The plan is to have a look at some recent x-rays to look for inflammation in my broken sternum, and to check out my kidney function from a recent blood test just to check they're doing okay before I start putting more chemicals into my body and to try and find out what the best kind of painkiller will be for me. The only choice really is different forms of morphine that are slow release so I can have some background pain relief and something doesn't make me feel too calm or strange so I can still drive and keep up with everything that's being said in my lectures. Oramorph, which is what I'm on now, acts fast but stops working quite quickly so for a constant it's not brilliant. When I'm on the other morphine I can still take this as a top up when it's really bad. I don't feel I suffer much with the side effects of morphine but they do make me feel a little spaced out when I take a lot, which is fine if I've got nothing to do but if I need to drive or concentrate on work, it's not ideal. 

She put my mind at rest quite a lot about taking morphine all the time, the slow release form and my oramorph. She said it was virtually impossible to become addicted to it when taking it for pain relief. It's when you take it when you're not in any pain that it effects different receptors in the brain and causes addiction. And she said that for me personally it's probably the safest thing I can take, aside from paracetamol, which doesn't help the pain at all. Mainly because of all the medication I'm on is effected by taking things like ibuprofen but is perfectly safe with morphine. Even though we think of ibuprofen as being a quite safe over-the-counter drug, for me it's much more dangerous than taking morphine, which she said isn't really dangerous but has to monitored well because of the implications of taking it when you're not in pain. 

I think people get quite freaked out by the thought of morphine because of the stigma of death and addiction attached to it. I mean, it's a class A drug after all. But I don't think it's really this amazing, dangerous pain relief that some people think it is. It's sounds like quite an extreme form of pain relief, and the fact that's it's not actually relieving my pain might sound pretty strange to you but it isn't an all round great pain reliever. There are a lot of different forms, it's not all the same as what they give people when they're dying. And they probably give those people a higher dose than you could function on outside hospital. So morphine is a the most sensible drug for me to take and like palliative care, it's got a bit of a bad reputation. 

I'm really glad that I said I was a bit nervous about takinb morphine because of what people think about it, but she really put my mind at rest on that one. We also talked about anti-sickness drugs because whenever I'm ill I get insanely sick. I've never found an anti-sickness that works for me, my body just doesn't like them at all, even the ones they use on cancer patients going through chemo, but it's nice to know that if/when sickness becomes more of a problem we can have a look at trying some more out and seeing if there is just one that my body can handle.

I'm really happy with today. Even though I didn't actually get any more pain relief, but after my trip to Swansea next week it should all be sorted and at least I won't be at uni all the time so I can pick up new drugs and visit the palliative care team whenever I need to without having to arrange a trip home. 

So this turned out to be a long post. Hopefully knowing more about palliative care and morphine might come in useful at some point in your life.
Thanks for reading and happy Wimbledon season! (yes, I'm a tennis fan) 

Template by