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. 

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