I'm home!

You'll probably notice that I've been a bit quiet and I hope you've not been worried. The main reason for this is that every time I thought to myself, I'll start writing my blog post about this, a doctor would saunter in to my room and completely change the plan. Even I was pretty confused about what was happening by the end of it so I thought I'd just wait until after it was all over and explain it to you then!

Yes! I'm home and reasonably recovered from a second lot of surgery. A week after my pacemaker came out, my surgeon became worried that the bit of pacing lead he ended up leaving in because he couldn't fish it out may have become an infection risk. He decided he needed to have a last stab at getting it out. Unfortunately my body decided that wasn't going to happen and I began spontaneously coughing up blood just as my surgeon came with the consent forms. My pressures are so high in my lungs that random blood vessels have a habit of bursting. Small vessels heal up on their own but bigger ones need surgery. I've already had this surgery once and was really upset that it was happening again. They hoped to get me into surgery the next day, which was a Friday, but the team was too tired and they thought it was a risk starting at 5 0'clock in the afternoon. So then we had to wait for the weekend to pass and then nothing happens on a Monday in hospitals so it was Tuesday by the time we had another plan to do it. 

Tuesday at 9am I was on the table, strangely calm, waiting for all the iodine on my neck and chest to dry. Yes, I was awake! Thank god it was such a better experience than I'd had before with local anaesthetic. It went exactly how it was supposed to. Why I wasn't given any kind of calming drugs for my previous surgeries I will never understand. I was actually asleep for most of this operation, which was a good thing as they worked at it for three hours. They had a catheter (long tubing) in my neck, flowing through the heart and up into the artery where the lead was lodged. I could see the x-ray film on the screens as they tried to grasp the two inch length of lead but it was just too embedded in scar tissue that they couldn't even get a hold of it. Thanks to the heavy drugs and the lovely technician holding my hand and to my surgeon who talked me through the operation it was no more trauma than a long nap and a bee sting, which was all I felt as the anaesthetic went in. Admittedly waking up with the time 12:40pm on the machines made be a little concerned at what was taking so long but I'd barely opened my eyes and the technician was there telling me everything was okay, they couldn't get it and that they were stopping now. 

I went to recovery, scoffed five custard creams and a cup of tea with mum who was very worried that I'd had another awful time as I'd been in there a total of nearly four hours including prep time. You almost can't believe the patience of a surgeon taking three hours staring at an X-ray and trying to grab this little piece of wire with his little tool. I have a great deal of patience but even I would struggle to concentrate that long on something so dull. 

As soon as I was back on the ward some 20 minutes later, I asked for morphine and slept like a baby for nearly 24 hours surfacing only for toast and tea and morphine. Unfortunately, the bright spark who wrote up my morphine wrote me up for 5mls, an adult dose when I'm clearing the weight of a 12 year old, not to mention already dosed up on stuff from the operation so it took a long time for me to stop feeling drowsy. But as soon as I did feel better, on Thursday, they sent me home! (After 7 hours waiting for pharmacy to print a label!!!)

So I'm home now and well and truly worn out! Going to bed at seven, asleep by nine and sleeping through till seven or eight in the morning. I'm working hard on getting the calories again after a lot of nil by mouth days in hospital while they couldn't decide when they were doing this surgery. I'm no longer coughing up blood, I'm finishing my antibiotics today and my heart is working well without a pacemaker. And I want all of that to stay that way, thank you very much! 

It's been a long month in hospital and I'm so happy to be home. But I thought it'd be a lot closer to Christmas by the time I was home so now I'm home and it's not Christmas I'm a little disappointed. I won't be wishing my time away though. Winter is my favourite time of year and I'm going to enjoy the leaves falling, Halloween and cosy nights in on the sofa.

Pacemaker Problems!

This update is a little late but I've been in hospital, dealing with all the news and not quite feeling up to writing about it. Today, I'm feeling better and have had plenty of time to get my head round everything.

So with my usual display of bad luck the healing of my new pacemaker was pretty slow and rubbish. I wasn't too worried at first but then a blood blister began forming over the scar and in fear of it popping and causing an infection I went along to hospital and they admitted me. They were too scared to do anything at first and left the blister to pop, which opened up my scar and made it really hard to keep bacteria out. It was covered up for a few days while I waited for my surgeon to see it and when he did he found a deep hole and actually caught a glimpse of my pacemaker through the wound. Not good! So the pacemaker needed to come out. My body was rejecting it and physically trying to push it out of my body. (Yes, ouch!). It took him a while to decide what to do because putting a new pacemaker in would just cause another infection and because I have a central line of the other side of my chest we were in a bit of a pickle. The first surgery was cancelled as usual and I ended having it done on Friday, over a week after I'd been admitted. 

He took the old pacemaker out and all the leads. Unfortunately the leads broke as he was getting them out and as my anatomy is quite strange they couldn't get it out. My surgeon had to call another surgeon for a chat and they decided it was safer to leave it in as it's inside an artery. The surgery took about 5 hours in total and I was quite unwell when I woke up as my lungs were very unhappy with being ventilated so long. My oxygen levels are only just getting up to 70% after a few days of struggling to hit 55%. My body is full of fluid and I'm achy and sore but slowly improving. Good news! I might not need another pacemaker as my heart seems to be working fine without it. I'm so pleased as I was really unhappy with going through more surgery because I just don't feel strong enough and it's just going to make the transplant less likely to be completely successful. I'm too ill for this stuff now. And putting in a new pacemaker would mean an extra surgery to move my line also. If they do find my heart is getting a bit tired they'll wait as long as possible for a good recovery before they do it. But fingers crossed!

I've been practically bed bound for four days but I'm getting better now and able to move around a little. I think I'm on the mend now. But I can't tell you how strange it feels to not have a lump of metal in my chest! I've had my pacemaker since I was 3 and it does feel like I'm missing something. But I'm definitely happy not having it back and enjoying having a nice flat chest. Very grateful to my surgeon for doing such a neat and careful job, so much so that I have very minimal bruising and pain. 

I'll be in hospital for the next week to 10 days having super strength antibiotics to blast away the infection, getting a little more active as well as keeping an eye on my heart to make sure it doesn't do anything funny. I should be back to regular blogging soon! 

Holiday!

I went on my little holiday/vacation last week to the seaside town of Weston-super-Mare. We were really lucky with the weather. As I come out in a rash in the heat, I was happy it wasn't too hot, it was perfect for being all out day for me. We spent a lot of time outside! We had a beach day and visited the pier, went to the aquarium and had a look at the sand sculptures, which were really amazing.

How they manage to make these out if ordinary sand I have no idea! But they were all brilliant.

We went to the theatre while we were there and saw a really good play called 'Double Death', which was a bit of a crime mystery. It was really clever and I liked how all the objects from the game Cluedo were props on stage. The dagger, the candlestick, the rope and the others were littered around the stage. It was really clever and reminded me a bit of the Agatha Christie stories. 

We had a day at Noah's Ark Zoo Farm in Clevedon, which was a kind of cross between a zoo and a farm. You could feed the chickens and the goats and hold rabbits and gineapigs (which made me really miss my little rabbit! I miss having live things to cuddle!) but they had lions and tigers, monkeys, zebras, giraffes and two new elephants, one of which had only arrived the day before. It's such a great idea to have them together because although zoos are great it's frustrating, especially for children, that you can't get right up close or touch any of the wild animals. There were groups of nurses and patients from old peoples' homes and lots of disabled children so I think it must be well known as a good place for wheelchairs. There wasn't anywhere we couldn't get to, which sadly is a rare occurrence at places like this! The restaurant was terrible but we had plans to go out for an evening meal anyway so we didn't want to fill ourselves up. 

On the way home we stopped in Bristol and had a shopping day. I popped into H&M for a basic cardigan as it's getting colder and my pacemaker is still sore so getting jumpers on is a bit of a struggle. I also got some bath bombs from Lush to save for a rainy, cold day. We had a great meal in TGI Fridays, which is an American themed restaurant, for those who don't know, so unlike the grumpy old British the waitors there are really lively and friendly. We had a lovely Italian waitor who was practically bouncing off the walls with enthusiasm and we really liked that. They do tapas in there now, which is perfect for me as I don't eat much but I still get to try lots of different things. 

In other news my pacemaker is still hurting. I got the stitches out last Monday on the way to Weston and the actual wound has healed really well but it's still really swollen and sore over the actual area of the pacemaker. Apparently it's, not exactly normal, but nothing to worry about. It'll go down eventually but it's going take a long time unfortunately. My chest is still bruised and isn't fading much either but it'll heal one day! I'm glad the wound is okay anyway. That's the bit that could get infected so it's important that that heals quickly so I don't get any nasty bacteria in there. It's definitely getting less painful and that's the main thing. It's just hard to remember not to move it too much now as it's only very painful when I move too much or over-stretch it. The thing I'm finding annoying is I seem to spend a lot of my time changing dressings because I have my line and then I have my pacemaker wound too. I don't think it's quite ready to go without a dressing yet but I can probably be less careful about being sterile soon. The stress of not being able to scratch your face for twenty minutes is not fun! 

This week I'm looking forward to the Invictus Games, which is a kind of Paralympic Games but only including injured armed forces. It'll be great to see those suffering from mental and invisible illnesses competing alongside amputees, which I think is great because it'll make people understand a bit more about invisible illnesses and injuries. Just because you've got all your limbs doesn't mean you're not disabled. Obviously watching disabled athletes can make your average disabled person feel like they should be achieving more but I'm just glad to see more disabled people on tv. I feel like it might help attitudes and perhaps change the sad truth that disabled people are far more likely to be victims of crime than normal people. This should be televised in all countries taking part so give it a google if you're interested in watching some of it and don't live in the UK. There will be some sports that you won't have seen it heard of before, created specifically for disabled athletes, so it's worth a look. 

I have lots of blog ideas piling up so I'll be back soon! 

My Pacemaker Device Change

This is my second brush with surgery under local anesthetic and I feel I might have developed some kind of bad luck with them. I wish I could tell you how much better it went than my Groshong line insertion but I don't think I can say it did.

The problem was that when I was on the table, one of my doctors popped his head in and said, "don't give her too much sedation because she has Pulmonary Hypertension." At this point I didn't really know how strong this sedation was so I thought, oh well hopefully I won't feel too sick with it because usually any kind of drug that causes drowsiness usually makes me feel sick or hallucinate. As I'm underweight I expect they probably weren't planning on giving me a huge amount to start with but with even less going in I felt relaxed for about the time it took to lay a sheet over my head and the  I felt completely back to normal. This time they actually did give me enough anesthetic so I couldn't feel the insition but the problem with local anesthetic is that it doesn't do much for anything below skin level so all the cutting and pulling at my muscle was agony and unfortunately the weight I had lost meant that he had to cut deeper into the muscle so that the pacemaker wouldn't be sticking out so much. I'm not going to lie, it was extremely painful and they refused to give me any more sedation when I asked. 

It seems to me like they should have had a proper meeting to decide whether it was more dangerous to give me general anesthetic, which carries it's own risks, or to give me sedation rather than to expect a twenty-one-year-old, who let's face it has been through a lot already, to deal with that amount of pain with nothing more than a nurse holding her hand. I agree with my specialist nurse that doctors assume the more operations you've had the easier it is but in actual fact the more you've had the harder it is because the more trauma you've been through, the more bad experiences and bad thoughts you have associated with surgery. This pacemaker change is my sixteenth operations and I can confirm, it does not get the slightest bit easier. 

But on top of all that I had to deal with the pain of a pressure dressing, pushing at all this ripped, cut and sore muscle because it wouldn't stop bleeding. Talk about rubbing salt in the wound, stamping on the broken foot, while saying airily, "oh you must have a low pain threshold". I have never been so close to punching someone in the face! Perhaps if they had given me the proper pain relief I wouldn't have been so distressed but I'm afraid paracetamol just doesn't cut it. Especially when they only give it me every six hours because I'm so underweight. Morphine would have caused more bleeding as it dilates the blood vessels and codeine makes me extremely drowsy and sick, the resulting vomiting would have caused more pain than ever. I couldn't help thinking that if they just left it alone and stopped prodding at all the swelling, changing the dressings and putting pressure on it, it wouldn't have bled so much in the first place.

Unfortunately the wound is still agony as it's more swollen and bruised than you would usually expect. Probably down to the excess bleeding, the fact that I'm on warfarin, which stops my blood clotting and my Pulmonary Hypertension medications, which open up the blood vessels. I'm home from hospital but very uncomfortable even with the combined efforts of Oxynorm (a liquid morphine they finally let me take once the bleeding had stopped), paracetamol and iburprofen. I can get it comfortable enough to sleep for the six hours I have to leave between doses so I'm managing. I'm extremely tired and sleeping through the night as well as taking two two-hour naps throughout the day. I think my body is still struggling with the trauma whilst desperately trying to repair itself.

I'm sorry I couldn't give you the usual positivity. I'm feeling a little shaken up by my experience but I've recovered from everything else to there's no reason why I won't recover from this. I tend to feel better very suddenly. Everything will be back to normal soon. Time is the greatest healer. 

This is currently what my wound looks like. 

I hope to bring you good news of my amazing healing powers in a few days time. Thank you for all your thoughts and good wishes. 

Not Another Operation!

Well you can't say my life is dull! I had a routine pacing check today and out of the blue it turns out my pacemaker is extremely low on battery. It's been working on back up mode to conserve battery, which is probably why I've been having more palpitations than usual, which I had just put down to a combination of coffee and my medication. I had a blog post half-written about how tired I'd been recently and wondering why but I think we've solved that big mystery now. I actually wrote that it was like I just couldn't get going. Well no wonder with my pacemaker giving out lower voltage impulses! 

So it looks like I'll be in hospital in the next week or two having it changed. I've not had one done in adults before so it'll be the first time under local anesthetic but seeing as I react so badly to general anesthetic I'm actually quite glad of that. It can't be as bad as having my line fitted anyway. There was no way they gave me enough anesthetic for that one and I had no sedation or anything. I'll be making sure this one goes differently. I'm going to tell them every five seconds that my anatomy is back to front after my last surgeon didn't have a clue. Meanwhile the settings have been adjusted so it drains as little of the battery as possible. 

The annoying thing is I booked a holiday four days ago! Fingers crossed I'll still be able to go. Hoping for a nice early date for the operation so I'll be all healthy and not too sore for my holiday! 

Just my luck eh? I wouldn't have needed another pacemaker if it could just have lasted until my transplant! Well at least it should sort out this chronic tiredness I'm suffering with though I think I would have prefered it to be down to a simple vitamin deficiency but a big urgent problem is more my body's style!

Body Confidence: Be Proud of Your Battle Scars!

Dealing with new scars on your body isn't easy for everyone. I've had scars for as long as I can remember and they've never bothered me a huge deal but during my teenage years I did start to feel a little insecure about them, especially as I was dancing during that time and my dance uniform showed them off quite a lot.

I realised last time I did a blog post about scars I didn't actually put in a picture of my own scars, which was a bit naughty of me really when I was telling everyone to not worry about them. These are the best pictures I could get while still preserving my modesty! The first one is my pacemaker scar, and as you can see the pacemaker is pretty visible as a lump under the skin, in the second one you can see my heart surgery scar, which you can see in the third one goes all the way down to my belly button because I had surgery on my abdomen after my heart surgery so they carried on with the existing scar.








(You have no idea how weird it feels putting a picture of your belly button on the internet!)

It does surprise me how much people stare at my scars when I'm talking to them. I don't really think about my scars much so the only time I'm aware of them is when they get stared at. But I definitely think the staring was worse when I was a teenager and was around other teenagers. So if you're that age and becoming insecure by your friends and classmates staring, trust me it does get better as you and the people around you grow up. I think people stared at my scars, if not everyday, every other day, but now it's quite unusual for it to be as common as once a week. Everyone starts feeling insecure about themselves at that age so it's natural for everyone to be looking at each others bodies to try and figure out what "normal" is, so don't just assume they're thinking something mean. The thing about people is, they're far more likely to be thinking about themselves and how they're acting and how they look and their own insecurities than they are going to be judging or thinking about you.

Scars are an inevitable part of living, whether it's a little mark from a pimple you picked at a little too enthusiastically, a scar from falling down some stairs when you were a kid, or a huge open heart surgery scar, they're all a part of you and a part of your story. You can't and shouldn't wipe out a part of your history just because it's unpleasant. That goes for stretch marks too, I have stretch marks over my hips and bottom because I was really underweight as a child and I didn't have much of a bottom at all, so when I went through puberty, I grew outwards really fast and the stretch marks appeared (Yep, stretch marks happen to petite people too!). Even though they haven't got nearly as interesting a story as my scars, I still don't dislike them, to be honest I'd completely forgotten about them until I thought about writing this blog post. We should just be glad our skin is able to stretch that well, it would be much worse if it started cracking and bleeding! The same with scars, they're not painful or unsightly, besides people pay hundreds and sometimes thousands of pounds to scar their body with tattoos to remind them of their past, you've got an awesome one for free that will always remind you of that operation you survived. Just because scars aren't as fashionable as tattoos doesn't mean they aren't as meaningful or beautiful. Not to mention giving you a bit of a head start when it comes to dressing up as a zombie for Halloween and coming up with awesome stories about your scar actually being from a shark attack for your nieces and nephews. And girls, don't worry, most guys find them cool, you're definitely not going to be missing out on any dating opportunities because of your scars. Men aren't idiots, they know the beauty industry is not an accurate representation of female beauty better than most of us do!

I never think about my scars when I'm buying clothes or choosing what to wear. I don't feel any less uncomfortable when they're on show and when they're not. Even when I was choosing dresses for my school prom, my scars weren't something I was considering. Although, I remember when I was reading Harry Potter for the first time (probably around the age of 8) I had a dream where I walked up to the mirror of erised and I saw myself without any scars, so maybe I was more aware of it than I remember but that's pretty much the only memory I have of wishing I didn't have scars. When I was a teen my best friend had scars too and we chatted about it. So, if you're a teen and feeling uncomfortable about your scars, just chat to your friends about it, I promise you that no one cares about them as much as you think they do and you might find out that someone else has a scar too.

I'll be putting my pictures up on my Instagram to show everyone that scars are nothing to be ashamed about or self conscious of. (check out my new instagram feed on the side bar, and there's a link to follow me there too!)

I hope this has helped you to feel better about any scars you have!

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! 

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. 

Buying swimwear when you have a pacemaker and/or scars

I've never had a problem showing off my scars. I've had them since I was three and there as much a part of me as my personality. And I couldn't really hide them in the summer, even if I wanted to, without getting ridiculously hot. I have one scar from the top of my chest right down to my belly button from open heart surgery and surgery on my abdominal organs. I also have quite a wide horizontal scar just below my right shoulder and quite a big raised lump where my pacemaker is. Pacemakers are usually fitted on the left side but as my heart is a bit back to front they had to put it on my right side instead. I'm on my fourth so the scar has been done over four times and it's quite messy and wide. I also have a diagonal scar on my right side at breast height but as I can't see that one unless I look in a mirror and lift my arm it doesn't bother me at all and it's pretty thin and hardly noticeable. I got it when I pulled on my wires out after my first open heart surgery (a first according to the nursed, no one knows how I managed to do it!) and my lungs filled up with fluid they had to drain off. I have a few catheter scars on my neck and groin and some from blood tests on my wrists and ankles.

The pacemaker one and the heart surgery and abdominal surgery one are the most noticeable and I do get stared at quite a lot when I wear bikinis but so what? People walk around with tattoos on their foreheads and get stared at too. There's no reason to be embarrassed about your scars, or worried people will get offended by them. They're part of who you are. And I promise you no one is going to be thinking anything bad about you because you're showing your scars. It's more likely they'll be thinking "oh good for her, she's not hiding her scars" or most probably, "wonder what she did to get those scars". Hopefully they'll be thinking I've been attacked by a shark or something rather than the slightly boring reality.

It's natural to feel a little self conscious about scars, the same as you would if you went out without a certain bit of makeup that you always wear to a certain place or if you haven't washed you're hair that day. It's something you have to get over if you want to wear whatever clothes you want.

On a practical level, pacemakers get in the way when you're buying clothes, literally. Bikinis, bras and sometimes swimming costumes are the hardest to find when you have a pacemaker. The bandeau stye bikinis that sit just below the edge of the pacemaker can be quite painful, especially if you're quite skinny like me. Straps can sit awkwardly pushing at the side of the pacemaker which can uncomfortable and painful. Wide straps are the best choice and halter-necks are good for hiding and cushioning the pacemaker completely when they sit at the right angle. Adjustable straps or a halter-neck that's tied at the back of the neck are good as they can be made slightly looser on one side so as not to be too tight on the tender tissue around the pacemaker. 

This year I bought my swimwear from Marks and Spencer's (if you're not British and wondering what that is it's an upmarket store that sells everything from health and beauty stuff to clothes to food). The clothes are obviously aimed at women a little older than myself and I'm quite big breasted so the support they're swimwear provides is great for me. They're also good because the straps on their bikinis and swimming costumes are quite wide and both the bikini and the swimming costume I bought completely covers my pacemaker and as they're slightly padded they cushion it quite nicely and none of the seams are uncomfortable on the edges of my pacemaker. Marks and Spencer do some nice young clothes now too so they're not all really plain and boring. The bikini I bought as a black and white Aztec print on and the swimming costume is navy blue with white cherries all over and a little skirt at the hips. The bikini has a halter-neck and the swimming costume has nice wide straps. They've both got low necklines so they show off quite a lot of my central scar but as you've probably gathered that doesn't bother me at all. They were on the pricey side but they had a 20% promotion on when I bought them so it turned out to be quite a bargain. And they're going to last me a good few years as they're kind of things I could wear for ages without them going out of fashion or not suiting an older body. 

I hope this has been useful. I don't know very many girls with pacemakers but I'm sure other people must have the same problems I do with getting clothes that are comfortable around my pacemaker. If not I hope you found it enlightening and if you have scars I hope I've made you feel a bit better about them. 

Thanks for reading!

Hospital visits

It's been quite an eventful two days! I've had lots of trouble with the contraception I'm using, and I ended up phoning out of hours and dashing off to the hospital at 11:00 last night (if you don't have out of hours in your country it's where you go when it's not a big emergency but you need to be checked out and the doctors are closed). They didn't want to give me anything to help because they didn't know if it messed with my PH or any of my medication. I was bleeding so much it was ridiculous. So it was a bit of a waste of time but at least it put my mind at rest a bit as she said the amount of blood I was loosing wasn't harming me because my blood pressure and heart rate would be all over the place but she wanted me to have blood tests done today. But as luck would have it, I had an appointment with my PH doctors today so I just got them to do the bloods. They weren't that helpful either with the whole bleeding and tummy pain problems. They just said to wait and see what happens.

Anyway they did kind of sort out my chest pain. A nurse from Hammersmith Hospital in London was there, which I was really happy about because I know she's really good. She was the one who suggested morphine for my chest pain when all the doctors were doing was dithering about and saying they didn't know what was causing it. When obviously the pain was the thing that was getting in the way of my life and they'd done all the tests they could do so they knew it wasn't anything major. But anyway, she said it was quite common to get chest pain with PH (why my doctor didn't think of that I don't know!). She said it could be my heart getting bigger from all the pressure and strain it's under and that could be stretching the outer layer of muscle around the heart and causing pain. Or she said it could be an inflammation in the lungs due to the pressure in the lungs. But neither are really bad, it just the PH having an effect on them, it doesn't mean it's getting worse or anything. 

They've increased my iloprost dose again but they don't actually do the medication in a big enough dose so I have to put my new dose and my lower old dose together. So I have to nebulise twice every two and a half hours now, which is a pain but it's worth a try. 

I completely failed my walk test. I hardly did 100yards and I felt so out of breath and the nurses had a panic because my heart rate was so high. But I felt fine after a lie down. Hopefully my breathing and stuff might get better on the higher dose of iloprost. 

I had a pacing check too and they said there plenty of battery left but it's quite difficult to say how fast it'll run out because the amount my heart needs it varies quite a lot. But it sounds like it'll be at least a year so hopefully I can get it done in the summer holiday so I don't miss any uni. 

I'm feeling so tired tonight and my chest is really bad from lack of sleep and that walk test, which my chest was really not a fan of at all. Think it's time for me to get some sleep. I'm off to yet another hospital appointment tomorrow just to check my hearing then I'm going to see my dad so it should be a nice evening. The hearing test isn't till 4 so I can have a nice long lie in.

Night all.

Thanks for reading