Strictly!!

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!

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! 

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! 

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! 

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!

Updates

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, http://www.gloucestercitizen.co.uk/die-transplant/story-19516621-detail/story.html

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!

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. 

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.