Thursday, 27 June 2013

Visit to Palliative Care

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

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

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

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

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

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

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

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

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

Tuesday, 25 June 2013

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. 

Monday, 24 June 2013

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) 

What is Congenital Heart Disease?

CHD is not to be confused with the more common heart diseases, which are lifestyle, environmental or inherited forms, which are not present at birth but present themselves later in life for whatever reason. Most commonly due to risk factors such at being overweight, smoking, or simply having it in your genes. Congenital means that the disease is present at birth. In short CHD is a birth defect. The heart is not properly formed during development in the womb. Pregnant women can put their baby at risk from heart disease or other birth defects by drinking alcohol, smoking and other things you're not supposed to do when you're pregnant. However mostly it's just a combination of bad luck and the way the baby develops in the womb.

I can't explain every kind of CHD to you because every case is unique and I don't know much about other forms of CHD aside from the ones that I have myself. So I'm going to explain my disease to you and I might give some information about other diseases on the way. 

The main problem with my heart is that I suffer from Left Atrial Isomerism, which affects my abdominal organs too. It basically means I have two left sides of everything. So instead of having a right and a left side, the right side is simply a mirror image of the left, so everything is symmetrical, which in terms of the heart isn't very good as the heart isn't supposed to be symmetrical. I can't really draw you a diagram as I have no idea what my heart actually looks like. I don't know if the arteries and vessels that lead to the right side are there at all or where they feed into the heart. I know my vena cava goes the opposite why it should, which quite a big 20% of the population have, but as for the other arteries, I have no idea. I'm I a bit of a strange case. I don't think many of my doctors know where everything is. A map of my body was drawn by a doctor when I was three, but whether that's still knocking around my hospital, I don't know. It's not something google images will have the answer for. So you'll just have to imagine my strange looking heart. Perhaps I'll get a surgeon to draw it for me one day. 

The next problem is that I have two holes in my heart. I have a Atrial Septal Defect (ASD) and a Ventricular Septal Defect (VSD). An ASD is a hole in the top half of the heart in the atriums (hence the name atrial) and a VSD is a hole in the bottom half of the heart in the Ventricles (hence the name ventricular). When you have both it is called an AVSD, an Atrial Ventricular Septal Defect. 

I am also missing heart valves, I'm not sure if it's just one or all of them. Heart valves let the right amount of blood into the heart chambers, so not having one, and having holes in your heart as well means that the oxygenated blood and the deoxygenated blood is being mixed. 

I had open heart surgery at the age of two in which they put a patch over one of the holes. Then I had another when I was eight in which they created a sort of heart valve from some of my own heart tissue. You can get mechanical ones put in but for some reason they didn't do that. It doesn't really work that effectively but it's better than nothing. 

I don't know everything about my heart. It was all told to my parents when I was two so I was only told what my parents could remember a few years later, and as you've probably gathered, it's quite complicated and difficult to understand. So I haven't quite grasped everything. I've never had a doctor explain it to me properly and show me all the diagrams. 

I hope this was useful to know a bit more about my heart disease. I've got a long list of blog posts I want to get done so stay tuned for lots more posts! 

Thanks for reading.

Saturday, 22 June 2013

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!

Thursday, 20 June 2013

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 

Saturday, 15 June 2013


“For each ecstatic instant
We must an anguish pay
In keen and quivering ratio
To the ecstasy.

For each beloved hour
Sharp pittances of years,
Bitter contested farthings
And coffers heaped with tears.”

Emily Dickinson, 'Compensation'

I've been feeling a little down the last few days and I'm not entirely sure why. It's made me even more down thinking about how good I felt last week. I think everything is getting on top of me. I've recently been trying out new contraceptives, so my hormones are all over the place, which really doesn't help. I'm worried that this chest pain is just never going to go, or just come and go, for the rest of my life. And I don't want to carry on with morphine if that's the case, because I can't take it forever. I'm a bit annoyed that my doctors aren't coming up with a plan. I understand that they can't wave a magic wand and find out what's causing the pain and they wave it again and come up with a cure. But they don't seem to be taking me seriously. I don't think they understand how painful it is. Just because I'm not rolling on the floor and screaming, doesn't mean it's not seriously hurting me. I mean, come on, I've had the pain for over a month now and I had in for over two months at the beginning of the year, so I've learnt to deal with it. But it still takes over sometimes.

Pain has a really bad effect on the body. I've read up about it quite a lot and I know when it starts interrupting with your sleep is when your body is going to really suffer. I'm starting to find it harder to get to sleep at night. I usually fall asleep to the sound of birdsong but I wake up early afternoon so I'm getting a manageable amount of sleep, it's just a bit of a weird sleep pattern. I live next to a building site at the moment, but thankfully they seem to be having a break because I haven't heard them banging around in the mornings lately. Sleeping way into the afternoon isn't really foolproof because at some point you're going to have to wake up early for something.

I think I'm dealing with the pain okay, though it's stopping me doing quite a lot. I don't think that really helps the old happiness levels either. I hope this feeling down only lasts a short while. It's not usually something I have to deal with because I'm a really positive, happy person. But sometimes it just all gets on top of me.

I really like the poem from Emily Dickinson that I quoted at the beginning of this post. I might be really positive in life but all the novels and poem I read are quite dreary. Perhaps I vent my feelings out by reading sad things and watching sad films, but it always makes me feel better afterwards. My writing tends to be a bit dreary too, but if you don't put your characters in difficult situations, you're going to end up with a pretty boring book. That goes for life too. Things have to go bad sometimes or you wouldn't learn and grow, and you wouldn't appreciate the good things as much.

I've got a load of hospital appointments coming up next week. I'm going back to see my heart and lung doctors. Hopefully I'll get a plan drawn up for how best to attack this chest pain (unfortunately hospitals aren't as well organised as the military). Then on the same day I'm getting my pacemaker checked and I'm going to ask how much battery there is left in it because I think this is the longest I've lasted with the same pacemaker and I'm not sure how long they last these days. I'd like them to change it when I'm on a nice long break from uni and preferably not Christmas so if it's running low I'd rather they do it sooner than mess up my uni work.

I've also got a hearing test the next day. Ah I knew there'd be something I'd forget to say when I first explained all the things that were wrong with me! I had a ear infection when I was young, which burst my ear drum and now I'm almost deaf in one ear. I learnt to lip read quite well when I was young so it doesn't really effect me that much. In any case, I think I've got bigger things on my plate than dodgy hearing. I have a hearing aid for when I have a cold and my hearing gets a bit worse so that needs to be checked and then I get my hearing tested to see if it's changed at all. It hasn't for as long as I can remember but it's good to get checked just in case.

There is literally only one part of my body that works properly or is normal and that's my eyes. I have really good eyesight. I think it's true that when you lose a bit of a sense another sense gets stronger because everyone else in my family wears glasses for reading at least. It's nice to have something that works. Shame it's something that deteriorates with age. I'll have to make sure I enjoy having something about my body that's normal while I can!

So that's it for today. Think this is my longest post! Hope you found this interesting anyway. Comment, follow and stay tuned for more posts.

Monday, 10 June 2013

Weird things you notice when you're disabled

I thought I'd do a bit of a funny blog post today. There's lots of stuff to get down about when you're ill and spend a lot of time in a wheelchair but it's good to laugh at it all. I swear I'd go mad if I didn't.

So, I'm going to list all the weird things people do when they see someone in a wheelchair. I like to call them 'social quirks'.

- Firstly, people eyeing you carefully when you drive into a disabled parking bay. It's the most satisfying thing when your carer pulls the wheelchair out of the boot and they sort of nod or look away satisfied as if they've assessed you as handicapped enough to park right outside a building.

- People who try to hide their astonishment when you stand up to reach something or try a jumper on in topshop. They always seem really confused. Like a person can't be in a wheelchair unless their completely paralysed. Strange when you think I'm in the same position as a toddler in a pram. But no one looks strangely at them when they get up to run around a cafè.

- People in supermarkets (usually women actually) who try and pull their trolleys or pushchairs out of your way whilst pretending they haven't noticed you by staring blankly at the shelves. This is a really odd one. Men are usually only too happy to let you notice that they've helped you out by getting out of the way, always smiling, rather pleased with themselves, when you thank them.

- This one does actually annoy me a bit. And it's children who stare, open-mouthed at you. And worse, their parents who pretend it isn't happening. I don't mind that children stare, it's natural to be interested or intrigued by something that's new or different but their parents really need to teach them that it's rude to stare. That probably isn't something they're going to say in front of me but they could at least spare my feelings by getting the child interested in something else.

- This is my favourite one - when disabled people meet other disabled people. We usually exchange an appreciative nod. Like when you catch eyes with someone who has the same dress on as you. But sometimes I even get excited waves and greeting, which is rather nice I think.

- Women who smile kindly at you in shops, like you're a cute little baby in a pram! It's not patronising though and I find it quite sweet. Especially from little old ladies.

This is probably going to be one of those blog posts I'm going to be adding to over the next few days because I'm sure there's more funny things people do when they see a disabled person.

On the whole people are only too happy to help or get out of the way for you, which is nice. Though my boyfriend once rammed the wheelchair into a man who tried to push past us in a theatre once. He looked so affronted afterwards but he was a bit rude to get in our way. A woman was quite rude to my gran when she accidentally bumped the wheelchair into her but to be fair she hit her with the metal footplates right in the ankle so it must have hurt quite a bit! But I have much more good experiences than bad and even the bad ones are funny as long as you're in a good mood.

The best thing, probably, is how easy it is going to the theatre or events because the ushers are always really nice and do everything they can to help you. I've been moved to the front of a theatre and got to jump the queue for the signing when I went to see J.K.Rowling.

So everyone might think that being in a wheelchair is completely horrid and yes it's annoying, but there are some good points too and it's always good to have a laugh about it.

Friday, 7 June 2013

Living each day as it comes!

Okay, it's a terrible clichè but it's a pretty good clichè to live by if you've got a chronic disease (or two). It's really hard to plan things because you never know if you're going to catch a virus or an illness, or if you're going to have a lot of chest pain or have a bad breathing day, or just feel really tired and just want to lie around all day. I really hate missing out on things because I'm ill. I've danced in a show while suffering with tonsillitis, having spent all day in the out of hours centre before now. I'm a tough old cookie and I won't miss something unless I'm so ill I can't leave the house. But tiredness is something that's extremely difficult to fight off. Especially when you have two diseases, which completely drains your body's energy.

But the last week has been really good. My chest pain has still been really bad and I've been tired but it seems to be easier to fight off now. I recently upped my dose of iloprost so, now I come to think of it, that's probably why I've been feeling good.

The weather has been really nice here in the UK, so I went up to Swansea for a couple of days with my boyfriend, and just had a really awesome time. We went to the beach, went out to lunch at lots of pubs and went out for a curry one evening. Also went down by a lake to watch the swans and the ducks and even had a mess around in a kid's park and was pretty surprised at how out of breath I was just on the swings. Swinging apparently uses up a lot of energy!

I also got my hair cut and re-dyed a different shade of blonde, which always makes me feel loads better after I've been feeling down or really tired for a while. I'm planning a boat trip down a river tomorrow so I'm quite excited for that.

Just makes me think of all the little things that really make me happy and how I need to do more of them when I'm having good days.

I'm just really enjoying life right now. Even if I am in a lot of pain, it's so much easier to deal with when you're having a nice day and not feeling crazily tired on top of it! It's nice to feel really happy and appreciative on the days I'm feeling good, kind of gives a nice positive to being ill a lot of the time.

I hope you're all enjoying the weekend and the sunshine if you're in the UK!

Monday, 3 June 2013

What is Pulmonary Hypertension?

Basically it just means you have very narrow pulmonary arteries, which are the arteries in the lungs involved in the oxygen exchange. When these arteries are very thin (usually due to an overgrowth of the lining of the arteries) it creates a back log of pressure, which the heart then has to cope with. I have drawn you a diagram. Excuse the quality, drawing on a painting app is really difficult!

This is a normal heart and lungs - observe the blood flowing easily through the pulmonary arteries

This is the heart and lungs of someone with Pulmonary Hypertension - observe the enlarged right ventricle and how the blood has much less space to flow through the pulmonary arteries. 

PH is a relatively simple disease to explain but extremely hard to treat and to live with. The lack of blood flowing to the lungs to be oxygenated cause the sufferer tiredness, breathlessness, chest pain and all sorts of nasty symptoms.

As for how it's caused, no one quite knows. If you have an existing heart condition, like I do, it is certain that it developed because of that. However those who get it without ever being ill before never get an explanation as to why they have it. It is often triggered by pregnancy in women, again they do not know why but there is evidence that the hormone oestrogen makes pulmonary hypertension worse and this could be the reason why women get it after having a baby. But it's a disease anyone can develop at any point in their life. Mine was brought on by my heart disease and although it is common to have heart disease with pulmonary hypertension it is not common to have pulmonary hypertension just because you have heart disease. That is to say that having congenital heart disease does not mean that you have pulmonary hypertension although it does increase your chances of getting it.The disease is extremely rare. About 2 in every million people have secondary pulmonary hypertension, which is the type you get from having an existing condition (the type I have). Primary pulmonary hypertension, which is when the disease comes out of nowhere, is a tiny bit more common but not by much.
Doctors believe that a cure is not impossible. Perhaps one day with continuing research they might come up with a cure or even a drug to stop it progressing. We can hope!

If you would like to know more about Pulmonary Hypertension, or if you suffer from it yourself, here are some organisations, which will offer you more information and advice. For the UK vist and for the US visit and if you are from another country I'm sure you will be able to find an organisation near you with the help of google.

Thank you for reading!
Follow me so you don't miss an explanation of my heart disease in the near future!
Any comments or questions will be much appreciated!

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