Do You Hate Your Disease?

The completely honest answer to this is no. And I know I'm going against the vast majority of sick people when I say this. I've heard the old "if anyone tells you anything different, they're lying" but I promise you I'm not. Diseases are quite rightly hated furiously by most people but the strange thing is that I've never felt it myself when I think about my own diseases. I'm not a hating kind of person. I feel like someone has won if they make me angry. I remember people asking Lynda Bellingham (a British TV actress who spoke out about dying of cancer before her death very recently) if she'd thought about all the people who had done her wrong. And she said "you don't." And I thought that was an odd question. Of course you don't, why on earth would you?

I understand why people hate cancer. I hate cancer. It's not something that such a deep part of your make up like heart or lung disease is. I was always going to be born with heart disease and I was always going to have lung disease. It wasn't a little piece of chance, a cell that mutated. There was no bit of bad luck that could just as easily gone the other way. My disease was written into my genetics from the get go. It is as much a part of me as my green eyes and my long toes. It's not an alien tumour that's growing inside me. It's my own organs

That is not to say I wouldn't prefer a life without my disease but I would say that I wouldn't change anything now it's happened because it makes me who I am. Who am I if not "the girl with heart disease"? I thought I might be alone in my lack of anger but everything Lynda Bellingham said in her interviews I completely agree with. She had it all right. There was not an angry bone in her body. And I think it's much better to live your life peacefully, rather than filling yourself up with anger at something you can't change. 

I think it helps that I don't think of my heart and lungs as diseased. I think of them as weak flailing young, birds just broken out of eggshells, premature babies with such delicate skin they're translucent. I don't imagine them as blackened smokers organs. They're weak and flailing but they're trying their best and I'm proud of them for getting me this far. They've done alright and they've survived an awful lot. I no more hate my disease than I'd hate the runt of a litter. In fact I'm more disposed to love the cute, little weakling than the puppy that's jumping around and chewing on my shoe.

Project: Weight Gain

Gaining weight is my top priority at the moment. I don't care how but I have got to get some fat and muscle on me because it's just getting ridiculous. In hospital I was nil by mouth 7 times and not feeling well on top of this really brought my appetite down. Now I'm out, I've been eating like mad and making a special effort to eat high calorie stuff. I've been adding butter to everything I can find, eating nuts and crisps and loading up on sweet potato. I have a new rule that whenever I think to myself, oh I don't feel like eating, I get a glass of whole milk and have that instead. I think forcing myself to eat is a bad idea as I'm prone to vomiting if I eat more than my stomach can deal with, but drinking milk means I still get the calories.

I'm learning not to fear throwing up but to eat until I'm a little over-full every now and again so that I can make my stomach grow a bit. I tend to feel pretty awful if I eat too much because the reasons I don't get hungry are that my lower belly is swollen with water retention (a symptom of my lung disease and general unwellness) and a very enlarged liver, which is caused by my heart struggling to pump blood around my body causing it to pool in my poor sore liver. You can actually see the shape of my liver pushing outwards in my upper abdomen. Both of these things mean that there's not much space for my stomach to swell so obviously I don't want to go pushing it's limits too hard as it's really quite painful and I don't want to make myself dread mealtimes. However, I think I'm doing quite well gradually eating slightly larger portions. I really do love food and anyone who knows me will tell you that I was always eating before my bad health took over. 

I'm currently putting all my food into a calorie counting app, which gives some other information such as fat, salt and sugar contents. My aim is to reach 2,000 calories as often as I can but 1,800 is my absolute minimum. To do this I have to have at least three sizable snacks on top of meals as well as glasses of milk and my calorie milkshakes. My favourite high calorie snacks are pistachio nuts, brie and crackers, bread and butter, pancakes, crisps and as a healthier option a bowl of hot sweetcorn with a little butter. Most days I still struggle to reach my target but I try as much as possible to keep the fat content in my food high while trying to get it from natural sources like milk and cheese rather than deep frying everything so that if I don't manage the calorie content at least I'm getting the fat. 

I really want to put on weight. Quite apart from needing to gain weight for my transplant, I really don't like the way I look now. I know, you'd think I'd have bigger things to worry about but it's still something that bothers me, probably more than it should. I'm more than skinny. I look malnourished and ill. I know people will think, "oh poor you, you're thin, how dreadful, I wish I could eat and not put on weight" and I understand that struggling with too much weight is a far more common problem but my weight issues are a problem for me. I feel like it's even effecting the shape of my face. Im okay, I'm not drowning in self loathing and it hasn't got to the point where I'm not wearing or buying clothes because they make me look skinny, it's just that I'd really like to be a normal weight if it's possible. My nutritionist has said that it might be impossible given that my heart is working so hard it needs all the fuel it can get. But I say nothing is impossible if you try hard enough. If 2,000 calories isn't working then we go up to 2,200 and so on. I'll start eating peanut butter by the jar and drinking calorie shakes like it's going out of fashion. It's happening, whether my heart likes it or not. 

To encourage myself, I'm posting a before shot. After Christmas I'm really hoping I look a bit more of a healthy, normal weight.

And this is the only before-before shot I can find. This was over a year ago. I think looking like this again is unlikely, but I can try. 

I don't know how obvious the change is to people who aren't me but I lost over 1 and a half stone inbetween these two photos and those jeans don't fit anymore. Maybe that'll be my goal. To get back into those jeans! 

Wish me luck!!

I've Been Sewing!

I actually made this a while ago but with everything that's been going on recently, I forgot to do a post about it. I mentioned that I wanted to make my own pouch for my chrono pump, which I have connected to my central line 24/7 and pumps my medication directly to my heart. Well I did finally get around to doing that and this is the result. 

I used an old plastic pencil case for the little window in the front. I came up with this idea after I forgot to switch my pump on one day. The pump is silent and once slipped into the pouch that comes with it, it's impossible to tell if it's working. So I thought a window would be really handy as I would be able to notice any problems straight away. I prefer to hand sew so the whole thing is handsewn. It's lined with the same blue flamingo fabric, which I bought online and is a thick upholstery fabric so it protects the pump quite well. 

I put in a pocket, the perfect size to slip my phone in but it turns out my phone interferes with the pump quite badly, causing it to shut down and meaning I have to rush home and make a new batch of medicine as the only way to get it working is to take out the battery and put it back in, which makes the pump reset and you can't carry on with the same infusion. So if you have the chrono PCA pump, keep your phone away from it! 

Just a quick post as I wanted to show you my hard work and if you get a glimpse of the pouch in my photos you'll know what it is now! 

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! 

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. 

Lots of Thoughts

I had a Papworth appointment last week that went so smoothly and so quickly that I completely forgot to make a post about it. The traffic was pretty bad that day so we were in the car for about eight hours all in all and to be honest I think it was a bit much for me. I was really exhausted and we decided next time we'll probably have to stay overnight. I'm currently getting Employment and Support Allowance, which is really helpful for stuff like that because petrol and hotels and meals add up to quite a lot.

The appointment only took about an hour. I had a blood test to check that there's no changes in my blood that could affect the transplant and only waited half an hour to see the doctor. He was really happy with how I'm doing, so much so that I don't have to go up to see them again for three months instead of the six-weekly appointments we were having before. They said I should go and enjoy my summer and they can always see me early if there are any changes. They're still a bit concerned about my weight but I told them that I'd started to put some pounds on and am eating much better so I think they were satisfied. My doctor was really positive about my line. It seems he really wanted me to have it and thinks I'll really benefit from it. So fingers crossed! 

I've been feeling a lot calmer about the transplant recently. I feel like I can think about it more without feeling scared. I have these moments of blind panic where it's like I suddenly realise how huge this all is. It's like my life is a book that you'd read thinking, there's no way this would all happen to one person. I mean, I have heart failure and my lungs are under pressures of over 100, that's big! I'm on the transplant list. And eventually I'm going to be that person who had a heart and lung transplant. That scares me a bit. It just doesn't seem real. It's too scary to think about. I probably think more about things I can do after my transplant than I worry about the thing itself. I think that's probably good for me. Watching Glastonbury made me think about how that might be something fun to do after my transplant. Looking back at my freshers photos at uni made me excited to be able to go out and have fun again. If I can get uni to let me do freshers again, even though I'll be restarting as a second year, that would be brilliant. I won't be able to drink but I catch energy from other people so if everyone else is bouncing around that'll get me pumped up for a good party! I'm getting excited now just thinking about it. I stop myself sometimes because I don't want to get too excited incase it doesn't work out as well as I'm hoping. I think it's important to be positive but I don't want to be delusional because if things don't go right it'll make it that much harder to deal with. I think I'm doing okay mentally but I do have an appointment with some kind of mental health person at palliative care soon, which might turn out to be helpful. To be honest as long as I'm not feeling any anxiety and I'm sleeping well I'm happy but it'll probably be useful to have someone on hand if I do start freaking out. 

I've got plenty to enjoy at the moment though. I'm doing really well. I feel really tired but I feel good in myself at the same time, if that makes sense. I'm more keen to go out and do things but I don't have any more energy to do said things. I still like to do them because I sleep better if I'm more worn out. Otherwise I end up waking up at 3.00am and not getting back to sleep for hours. As long as I have one thing a week that I can look forward to, I'm happy. Even if it's just a nice pub meal out, a shopping trip or a visit to my Grans, or even something little like a parcel delivery and a trip to Sainsbury's. This weekend we're going to have a Fourth of July BBQ with my grandparents so that's what I'm looking forward to that now. My boyfriend was here this week, which was really nice. We went to the cinema to watch 22 Jump Street, which was really funny and had a nice meal at Zizzi's as well as some good chill out time. He'll be down again soon too so that's another thing to look forward to. I've actually done a lot more this week than usual. I did pay for it with a really tired out day but it's refreshing to be tired out for a good reason rather than after weeks of constant rest! 

I hope you all have a lovely weekend and I'll be back for a hopefully less deep chat soon! 

Hammersmith Hospital

It's strange being in London and not being anywhere near the hustle and bustle of the shopping centres and business buildings. Hammersmith is next to the prison Wormwood Scrubs and is slightly in the middle of nowhere. It's all residential and little corner shops, though admittedly not shops that I'd feel safe walking into. It's such a contrast to where I live in the country but when I'm in hospital I might as well be anywhere as all I can see from my window in a brick wall and metal structures and that's usually what I see from every hospital room I stay in. 

My admission yesterday was awful. Asked to get here at 9 we felt guilty for deciding to get some more sleep and arrive at 11 (although when we phoned them, they said that that was fine) and then they said they wouldn't have any beds till 2 and put us in a waiting room. We ended up going to the restaurant and having a bit of early lunch but I must admit I was feeling pretty abandoned and not cared about after the procedure has already been cancelled twice and this was the third date we'd had to come into the hospital. I don't function very well on lack of sleep and was desperate for my bed so I could lie down and rest. Well we got there eventually at 2.30 but by that time the hospital day is pretty much over so I was feeling pretty annoyed that we'd come in and wasted a whole day. 

Things did start picking up though and my specialist nurse came for a long visit to explain everything about the line. It being the second time it was cancelled she wanted to admit me because the doctors are much more likely to do something if I'm in hospital rather than at home. Not the best reason to spend two weeks in hospital but I'm so desperate to get this line in and over with that I don't care how long I have to stay here as long as they do it. Unfortunately I've had a chest infection and I'm on antibiotics so they're being a bit hesitant to do anything while there's any infection so we're waiting for blood results to come back to see when I'll get the line fitted. Meanwhile they're going to teach me how to make up the medicine, set up the pump and care for the line once it's in so at least I'm not sat here doing nothing. 

The good news is because this is a university hospital I can sign into the wifi with my student login from my university and it works really well. I've got Netflix, iPlayer, 4oD and even an app which means I can watch live tv so boredom shouldn't be too much of a problem. In other news the food is much better here than usual hospital food. I had a curry tonight which was pretty tasty. I thought the chicken looked a bit dry so I just had the sauce and the rice. For a hospital to successfully produce a curry is pretty unusual. The food at my Bristol hospital is terrible and Papworth isn't much better. We also got some meal vouchers for the hospital restaurant in case I don't like the hospital food or I just fancy something different because they really can't have me missing meals. The restaurant is really good too and that'll save us a lot of money because I'll probably get quite a lot of food from the restaurant just because it's always going to be nicer than the stuff we get on the ward.

I've been trying to mix up my meds today so I know how to do it but I ended up with the drug all over my bed so that was a great start. But I'm here to learn and I've got plenty of time to practise before I have to be able to do it properly. I'll be doing it twice a day eventually so I'll get used to it. 

Looks like I'm going to be here for a while and in view of the good wifi I hope to be getting some blog posts up over this week. I'm all settled in as you can see:

Thanks for reading! 

5 Things That Made Me Happy This Week!

1. Baths

The simple cure for cabin fever is a good bath. I can't explain how much I'm loving baths at the moment. After a bad day a good lather of soap and a scrubby sponge is all you need to wash away the worries of the day. After a good day, what better way to relax than a sweet smelling bath? Sitting around all day feels a bit icky and dirty and no matter how ill I feel, I can always have a lie down in a bath. With my liver being so swollen it's the only time of the day I can get it to stop hurting. The warmth and boyancy of the water really takes the pressure off. It makes a lot of difference having that time without any pain. My liver isn't agony by any stretch but being uncomfortable 24/7 isn't pleasant and having that hour off makes it pretty easy to deal with.

I love a good smelly bath and I don't get much luxury in my life at the moment so I feel more than justified using up all of my lush products. I love lush for many reasons. They're a lovely green company started by a married couple with a great sense of humour. And their products smell amazing and do great stuff for your skin. Even the bubble bath makes my skin all soft and lovely. I was never that interested in moisturising until I smelt some of theirs. Nice smells and nice skin is the way to keep a girl happy! 

2. Swimming

On a similar subject, I went swimming on Thursday! I say swimming in the loosed sense of the word, what is actually did was float around. But my muscles feel well exercised and I didn't get too puffed out, which is great. The reason I went is that once I have my line put in I won't be able to go swimming anymore. Firstly the infection risk is high when your submerging something that has direct access to your heart in water that people have probably peed in. Yes the dressings are waterproof but they're not really designed for submerging, more a light shower or a quick wash with a damp flannel. There's also a risk bacteria could get into the line through the open end. For me there's extra reason because I'll be on a pump that can't be removed for more than a minute or two while refilling the medicine and I imagine it wouldn't appreciate being submerged in water. I know what your thinking but I can thankfully still have my baths. (That was the first thing I googled! Even before, how much does it hurt?). As long as I don't have it super deep I should be able to sit and lie in the bath with access site out of the water and I can just put the pump on a stool next to the bath to keep it out of the way of the water. Though it's a good idea to use clean water from the tap to wash my chest rather than the bath water. The good news is they're no longer putting the line in this week so I can go swimming again! I'll be having the line in the week after now.

3. Sunshine

I have a bit of a love-hate relationship with the sun. Or rather, I like the sun but the sun doesn't seem to like me. I come out in sore and itchy rashes after as little as ten minutes under the sun. So I have to coverup with a shirt and stay in the shade when it's hot. I used to only get it three or four times a summer when I was a child but the last two years it's really gone mad and it's like I'm completely allergic to the sun now. I also burn really easily. Last year I burnt my arms sitting in the shade with factor 30 sun cream on. So I can't really enjoy the sun to the fullest but it's just so lovely to see it shinning out there and relaxing in the shade with a cold drink is lovely. Everyone's so much happier when the sun is out and I feel my mood lifted too. As long as I avoid the dreaded heat rash, I very much enjoy a hot summer's day. 

4. BBQs

Like every other British person, we had a BBQ this weekend. In fact we've been having them all month. My mum is brilliant at BBQs. Everything is chargrilled and tasty, rather than burnt to a crisp and raw in the middle. They're just so good! We probably use the BBQ more than we use the oven in the height of the summer. There's just nothing better. We had my grandparents over on Saturday for a BBQ and it was the most perfect day. I felt really good, I usually start getting tired an hour into any kind of social gathering but I felt good all day apart from being insanely full after we'd eaten! It's always nice when I'm feeling well when I see my Gran because I know she worries about me. We've always been really close and I just love her to bits. It's not nice having everyone worried about you when you're ill but at least you get to see how happy they are when you feel better again. 

5. Papworth

The last that made me happy this week was going to see my transplant team at Papworth hospital because they were really positive about everything. Obviously I'd had a bit of a rough patch and I wondered if they were going to freak out about it. But they just said it was great how well I'd recovered since being in hospital. They want me to gain weight like everyone else but they weren't really pushy about it. They trusted that I was doing all the right things. Sometimes I feel like doctors think I'm a complete idiot. I have to assure them I'm looking after myself. As if I wouldn't be trying my hardest to stay alive long enough to get my transplant call! So I was really happy with that. And the appointment was really fast too so I was back home by 5 0'clock. I was expecting to still be at the hospital at that time! 

These are all the things that made me happy this week! It's been a good week! 

Weight loss, hospital and upcoming excitement!

I've had a bit of a rough time of it since my last blog post. My abdomen started swelling more, my breathless got worse, I couldn't eat and I had zero energy. After a few days spent entirely in bed we decided to go to the hospital to sort everything out. The main problem was I didn't eat so the weight was dropping off me and bare in mind I my swelling problem meant that I should have been gaining weight. You can really see how the weight has gone from my upper chest and shoulders. I've found bones I didn't even know existed. They didn't really do much at the hospital. I'd already doubled all of my water tablets but perhaps they took a long time to kick in as I started feeling better after being admitted. I started eating a bit better and they decided to let me go home after a few days as it would be a lot easier to eat lots of fatty foods at home rather than in hospital. They've threatened me with a feeding tube if I loose more weight. I'm just hovering over a severely underweight BMI at the moment and even though I've been stuffing my face since I left hospital and eating between 1,800 and 2,200 calories every day I haven't actually put on any weight. Although I haven't lost any either. According to my dieting app I should be gaining 1.5kg a month so fingers crossed that happens soon!

I'm feeling really insecure about the way my body looks now. I suppose if I was big and everyone kept saying "oh my god you've put on so much weight" and "have you lost weight yet?" and every time I tried to eat people said "why are you eating that? Don't eat!" I would feel the same way. I guess it's enivitable to feel self conscious about something everyone keeps talking about and you have to keep thinking about in order to accomplish weight gain or loss. I feel exceptionally angry at those posts that crop up every day on Facebook. Those "before size zero there was something called beauty" and "no one wants to hug a stick" posts. I find these really horrible. I wouldn't say, "no one like a fat person" or "oh these plus size models are disgusting". But FYI models are skinny because it's cheaper to make sample sizes of clothes in smaller sizes because it uses less fabric. Models all have to be the same height and size as the mannequins so that fashion designers can make clothes and know that they're going to fit whatever model they employ to wear it. It wasn't like an industry got together and decided to define beauty as skinny. There's no need to be cruel to thin people! I know people say they'd kill to have trouble gaining weight but I assure you if you were in my position you would be complaining too! 

I'm slightly concerned that I'm going to look like a drug addict after my transplant being so thin and with the medications making your hands shake. At the moment I look like some kind of child refugee who's got some serious bloating issues. Practically I'm constantly really uncomfortable with my bones being so close to the surface of my skin. I'm sleeping on a foam mattress and I still wake up with either my shoulder bones or my hip bone feeling seriously bruised. Size zero isn't all it's cracked up to be. I have a renewed sympathy for people with eating disorders. 

On to some good news, I have actually been feeling loads better since leaving hospital. I've had a run of really good days, which is brilliant. As long as I have a reasonable nights sleep I can pretty much garentee that I'll be able to get out of the house if someone invites me somewhere or I make plans, which is a huge improvement. Of course I will have the odd bad day but at the moment I'm enjoying my run of good days. 

My upcoming excitement is that I'm going to have my Hickman line fitted next week. Okay, so I'm weird to be excited about this but just the act of doing something that might possibly help my disease is much more preferable than sitting around waiting for the next lot of bad days to land me back in hospital on a feeding tube. Although I swear I'm going to be so annoyed if the new medication makes me sick cause I can't be not eating again! Mostly I've heard good things about it and hey it's something to do, mixing up medications and changing dressings, which is much more exciting than sitting breathing into a machine every two hours. Even though the medications is continuously pumped you only have to refill it every 12 hours and change the dressings on the line once a week so it's a lot less effort on my part. Sure having the line fitted isn't going to be much fun and I've heard they're really painful and bruise up a storm when they're first fitted but I'll deal with that. I've had a lot of catheters in my time and I can't imagine it being more painful than that. They both involve sticking tubes into arteries at the end of the day. 

The only annoying thing is that because it's changed every twelve hours you have to go to bed and wake up at the same time every day because if you suddenly stop the infusion your body can go into shock and people have died from sudden withdrawal. So I think I'm gonna go for 11am and 11pm as I like a good lie in because I wake up a lot in the night and although I go to bed early I don't get to sleep till 12 usually. I'm never going to stay out later than 11 so I'll always be home. The morning one might be a bit more problematic. I'll probably have to get up at 10.30 to mix up all the meds in time to change it over at 11 but if I have to go somewhere. Most likely a hospital appointment I'm going to have to change it on the road, in a cafe or at the hospital, which might be a bit annoying. But I don't think there's going to be a good time to do it really. If I did it earlier in the morning I'd have to do it earlier at night, which might interrupt meals out and visiting family and friends, which will probably be more annoying. 

So you'll probably be hearing from me after I've had my line fitted or before if I have any more thoughts. Thanks for reading! 

Living on the List

This has turned out to be the hardest post I've ever had to write. Which makes absolutely no sense whatsoever because I'm really happy at the moment. I think the problem is that I usually write down my thoughts but to be honest I don't really have any. The only times I really think about the transplant is when I'm having a bad day and just can't wait to feel better. I think I'm in a really good place at the moment because I'm ill enough that I really want that call to come but I'm level headed enough to not spend my nights tossing and turning, wishing and hoping. I know the call will come it's just a matter of waiting and keeping myself well enough for surgery.

So in view of the fact that I don't really have many feelings towards my transplant, other than a strange sense of calm, I've decided to write this post about what it's like being me at the moment. If I had taken the time to imagine what it might be like at this stage of my illness I probably would have imagined myself a lot sicker than I actually feel. Considering what's going on inside my body and how badly my heart and lungs are failing, day to day I feel okay (until I try and walk anywhere that is). Though it varies considerably. It's definitely a case of good days and bad days. It's mostly good but the bad days are really horrific and I do get quite down on those days. Everything just seems to get worse all on the same day and of course tiredness always makes everything harder to deal with so when I'm more tired I generally feel really rubbish. On bad days it's a case of trying to while away the day as fast as possible so I can get to bed and hope for a good day the next day. But the good days are okay. I can go out in my wheelchair, enjoy a bit of food, have a laugh and feel quite happy about everything. 

My main symptoms are tiredness, sickness, palpitations, painful swelling in the tummy and a lot of phlegm. But on a good day nothing is too much bother. The breathlessness however is horrible whatever day it is and I avoid it as much as possible because it feels so horrible, it can't possibly be doing my body much good. And I really hope to avoid an exploded lung or god knows whatever else could happen as my whole body feels like it's ready to throw the towel in. At the moment I can't walk much more than 5 steps without feeling out of breath and I physically couldn't do much more than 10 steps but that varies a lot too. My tummy pain has been under control up till now but it's been getting very painful recently, to the point where I can't sit still. I'm waiting for my water tablets to start making a difference because at the moment they don't seem to be doing much. I'm loosing weight like crazy too, which means my body shape is looking abit weird at the moment as I'm skinny as anything but my stomach and lower back is swollen so I'm looking slightly pregnant at the moment but hopefully everything will go back to normal after the transplant. 

In other news I'm off to get my central line fitted in two and a half weeks. It'll take months for the actual medication to start making a difference so I want to get the ball rolling as soon as possible. I'm not too worried about it as it's not under general anesthetic or anything so it's quite simple and then I have to learn how to mix the medication and hook everything up, keeping everything clean and stuff like that so that'll be quite interesting. 

Other than all that nothing much is happening. I've been out for the odd outing to stop me going crazy from being inside all the time. I've had lots of visitors, which has been nice. I like having something to look forward to like that. We're having a girls meal out this weekend for my Gran's birthday and the week after my boyfriend James is coming to visit so we'll probably do something nice then. I always think it makes a lot of difference getting out for an hour or two twice a week. 

A very inquisitive lamb I visited when I was at my Gran's last week! 

I'll update you all if something interesting happens but I'm really struggling to write anything at the moment. Perhaps watching constant reruns of Friends has frazzled my brain! 

A Year in The Life...

2013 was a bit of a mixed year. It didn't start out in the best possible way, still recovering from the glandular fever I had over Christmas and then being in hospital in only the second week of the year with chest pain and then catching a horrific sickness bug! Luckily the year got better! I turned 20! Which still seems a bit odd even though I'm nearly 21 now. I managed a 2:1 in my first year Creative Writing and Film Studies degree, even though I struggled a lot with illness and chest pain. And of course I started my blog! (I'm not sure what date that was I should probably check!) 

I feel like my illness has crept into my day to day life a bit more this year than it has perhaps any other year. It's something I seem to be thinking about more and more. Partly because the breathlessness, chest pain and medication routine intrudes my life more than it has ever done. Also the whole transplant idea has really taken off this year and I've had to think a lot about what I want to do and of course there's been a lot of worry about if I was even going to be offered it in the beginning, the disappointment that it didn't turn out to be miracle some part of me was hoping for, to the hope that one day that will change and transplant will be a safer route to go down. I think watching my boyfriend come to terms with it all has been the best part of this year. That sounds terrible but he really has surpassed himself and I am very proud, because it's not easy. We only got together at the end of 2012 so 2013 has been "the year of us". We just laugh about everything, and you've got to laugh about it. That's the one piece of advice I can give to you, is to never stop laughing in the face of adversity. Illness has always been a part of my life but it wasn't always a part of his, now it's just a part of us, part of life, part of everything. And that's pretty good going for a year's work. And there's no end to my praise for my family, particularly my mum, for how well they deal with it and manage to keep my spirits up too. The best thing about catastrophe (or rather the only good thing) is that it makes love stronger because you are that much more aware of how much it means to you. 

There will always be people who don't understand, who will never understand, but luckily for me there are very strong people in my life who understand and they far outweigh those people who really don't have a clue how ill I am because it's not written all over my face. It's that balance between treating me normally and being aware that I'm not normal that is so hard to achieve. The difference between not inviting me out or not arranging things for me because you'll assume I'm not going to be well enough and tweaking the arrangements so that I have the best time I possibly can while not damaging my health or excluding me. (I could go on for pages about how society is not following this simple rule when it comes to disabled people but I'll save that for another day!) For now I'll simply thank those lovely people in my life who are such a support to me. 

My writing has been the part of me that has grown the most this passing year and although my course is not perfect, it's doing it's job and I feel I am growing stronger as a writer. I've tried all sorts of styles that I wouldn't even have thought of trying, I've experimented and I've found out that I'm actually quite good at writing - who knew? I knew I loved it, I just didn't know if I was any good. And it turns out I'm not half bad. I'm going to have my name on a book one day. I want to walk into a bookshop, find some back shelf and say, "there, there it is, I wrote that. And look there's a gap, someone bought a copy!" It's a simple dream, but I take comfort in knowing I can do it! 

I don't have brilliant plans for 2014, I suppose I should be glad I haven't nearly died this year and I've made it to 2014 unharmed but that just isn't what I'm feeling. I don't like thinking about how the years are slipping by (I can't stand ticking clocks in my room because I hate to think of time passing so as you can probably imagine I don't like to celebrate new year much). To me, it's just another day. The fact that someone a very long time ago decided to split time into weeks, months and years doesn't resonate in my life other than a very practical way to organise everything. Only now I've got to remember to stick a different number on the end of the date which will probably take me most of the year to get use to. My birthday is the day I really think about the past year and what's happened, but as the rest of the world acknowledges a new chapter at new year, I thought I'd do this post now.

That being said I did have a very nice evening at my Gran's New Years Eve with pretty much all of what we might consider my mums side of the family. We had a nice Chinese and played a 4 hour game of trivial pursuit (which I lost quite badly - some of those questions are impossible!). It was a load of fun anyway and it was a really nice evening. 

So although I rarely acknowledge the passing of another year, I hope your year is healthy and bright, and hopefully mine will pass in much the same way as the previous year. With no catastrophes thank you very much. 

Happy New Year. 

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! 

Updates

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

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

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

Palliative Care Again

So I had an appointment with my palliative care doctor today to try and get some good pain killers for my chest pain. She didn't really know what the chest pain was but agreed that it was probably my pulmonary hypertension. Whether it's the effect if the pressures in my lungs or the effect of my lungs having to work harder. She did say it could be the iloprost but I'm not sure because the pain doesn't seem to get worse after I take it. She said it could be something to do with the stomach also because the pain is right at the bottom of my lungs so it could be something else. You have to be careful not to get fixated on the lung disease and just assume it's the lungs. I've had problems with my abdominal organs before now. 

She didn't get any tests done because I'm going up to Bristol early November and it's best not to have too many x-rays if you can avoid it. They aren't dangerous really, but when you've had at least two a year for the whole of your life, the radiation starts to mount up a bit. There's no point having one in Gloucester for them to do new ones in Bristol in less than three weeks. 

Anyway, she offered me a man made version of the oramorph, which tends to give people less side effects than the conventional form. I haven't tried it yet cause I have to drive back to Bath this afternoon and I don't want to risk it making me feel too drowsy to drive. There are lots of options if that doesn't work. It's just a case of finding the right painkiller for me. I'm glad I'm starting to get sorted on the pain killer front because I feel like my chest has got worse in the last few days. I'm hoping this new morphine is going to work. I'm falling a bit behind on my uni work. I think I'll have to spend tomorrow sending apology emails to all my tutors as I've missed a whole week of lectures now and I haven't recuperated at all. My palliative care doctor couldn't really help me on that apart from making sure I get a good night's sleep. Trouble is my pacemaker isn't very good at slowing my heart rate down enough to sleep. She said that was normal though so at least I feel less weird now. I've hallucinated whenever I've tried sleeping tablets so I'll just have to stick to camomile tea. 

I'll keep you posted on whether the new morphine does the trick.

Thanks for reading :) 

How Hospital Made Me Weird

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

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

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

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

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

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

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

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

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

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

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! 

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!

Book Review: 'A Change of Heart'; By Max Crompton

I thought I'd do something different today and write a book review of someone who has written about their own CHD adventures. 

It's quite rare to find these kinds of books on the market. But I think they're becoming more popular now. Celebrity autobiographies are extremely popular right now, with every comedian and pop star you can name having published their life story. Perhaps there are few people willing to write about their diseases, but I really enjoy (if that is the appropriate word) reading books and blogs written by people in the same boat as me. I've read a few of the books on the market but I never really agree with everything the writer is saying. I suppose it's an extreme circumstance to be in, being disabled, and we all cope with it in different ways. There have been tv programmes about disabled people, which I feel I've had more in common with the person, though more often than not they don't have anything that's even similar to my diseases.

Max Crompton's A Change of Heart: My Heart Transplant Journal at the Freeman Hospital follows Max, a CHD sufferer, in the run up and the after math of his heart transplant. It has probably been the most enjoyable read of the other books I have read in this category. He gives a wonderful insight into his world and his life. He has a good writing style, which is very relaxed and easy to read. You really feel like you are following his own personal journey, which involves more heart aches than the actual heart disease. It is written in the style of a diary. He has written almost every day leading up to his transplant and the aftermath. His loved ones write a few passages while Max is having his transplant, which is also insightful and emotive.

My only criticism is that his conversational style, while very enjoyable, does lend itself to talking about dinner and Max, sounding like a typical man, does describe quite mundane daily activities such as what he had for dinner and so on. It is quite endearing but I must admit it did get a little tiring. My favourite bits of the book were when he delved into philosophical matters, which do show off his intelligence and unique outlook on life, which I found very interesting and thought provoking.  

It is a brilliant read, especially if you have an interest in people with heart disease or transplants, if you're the relative of someone with heart disease or if you yourself suffer from a life threatening disease. Max writes in a very relaxed way that does not make you feel scared or uncomfortable. So if you're looking for a summer book, take a look at A Change of Heart by Max Crompton. 

Celebs with Congenital Heart Disease

Think having a life-threatening disease means you sit at home all day crying? Well what if I told you there's plenty of famous people with congenital heart disease. They may have fought for life in their youth but they can definitely be considered successful now.

Firstly we have Jessie J here in Britain. A very successful singer and judge on the singing competition The Voice UK. Jessie was actually treated at the same children's hospital as I was, she even stayed in the same ward as me. There's a good chance we were there at the same time as she said on Children In Need (a British charity event) that she practically lived there when she was young and I was there enough for it to be my second home too. Jessie suffers from Wolff-Parkinson-White syndrome, which is a heart disease that effects the electrical currents in the heart. 

Another singer, born in the US but rose to fame in the UK is Jimmy Osmond part of the successful band The Osmonds and brother to Donny Osmond. He had a stroke in his forties due to undiagnosed CHD and a hole in the heart, which he was born with. 

Next is an American actor, John Ritter, who starred in the tv series Three's Company and film Bad Santa among others. John sadly passed away in 2003 from undiagnosed CHD. 

One for you American readers, Shaun White, a two-time olympic gold medalist in snowboarding (2006 and 2010 Olympics) has a CHD called Tetralogy of Fallot.

There are also some famous parents of children with CHD:

Slyvester Stallone's daughter (one of the three in the picture) has CHD. You will probably know Stallone from his films, which include: Rocky, The Expendables and Rambo. His daughter has an atrial ventricular septal defect (see my last blog post for information on this) which I also have. She has also had heart surgery. 

Another CHD child of a famous actor is Katherine Heigl's adopted daughter. You may know Katherine from the film Knocked Up and the tv series Grey's Anatomy. The child was adopted from Korea and underwent open heart surgery when she moved to America. Katherine has said in interview that after heart surgery the child is now "perfectly fine" but I doubt that is true. CHD is incurable and life altering. I suspect Katherine is attempting to keep the press off the subject. 

In terms of celebrities this was all I could find. I have to admit, I was expecting to find more knowing how common heart defects are in new born babies. However I think this has shown that the severity of congenital heart diseases varies greatly and just because you have heart disease does not mean that you don't have a life or that you're not going to be successful at something. It also shows that congenital heart disease can be found in people who seem perfectly normal on the outside. It is an invisible disease. The result in it remaining undiagnosed is often death or a near death experience as can be seen with the cases of Jimmy Osmond and John Ritter. 

People with CHD can lead ordinary lives. Anyone you pass on the street could have CHD or other invisible diseases such as Cystic Fibrosis and many other illnesses. It is something that is both a blessing and a curse to those who suffer from things that cannot be seen. We are often called lazy or expected to do things that are difficult for us but we feel obliged to do when we have been asked. I myself had such trouble getting out of P.E. at school (I believe you call it gym class in the US) and had quite an argument with a teacher who couldn't understand why having a pacemaker exempted you from contact sport. But having an invisible illness does have it's advantages. You can blend pretty easily with normal people if/when you're not in a wheelchair. There's no staring and pointing or anything like that. You can pretend to be normal and healthy. But on the other hand it's part of who you are so why shouldn't people know about it? It's quite hard to figure out if it's a good thing looking healthy when you're not.

I hope this has been enlightening in some way, or interesting at least. 

Thanks for reading!

(I do not own any of these pictures)