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! 

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! 

Updates

Long time no speak! I know I've been a bit quiet recently but I've been so busy I haven't had much free time. But on the plus side, this should be a nice long post as there's lots to fill you in on.

Firstly, my chest pain really hit it's peak last week so I'd been battling with that for a while before realising that it was further down towards my diagram than it usually is and that my upper abdomen was tender to touch and swollen. So I went off to a&e last week and spent the day there. They did lots of tests but couldn't find anything wrong. But eventually they got hold of my specialist who said it was probably pain from the liver. The liver is encased in what's called a liver capsule, and it has lots of nerves in it, so what my doctor thought was happening was that the high pressures in my heart or lungs were pushing on the liver and that's what was causing the pain. He gave me a water tablet to get rid of excess fluid, and that seems to have helped a lot and I can manage the pain well with morphine. The only time it really gets near as painful as it was is when I'm bending over my laptop for long periods of time. Which isn't very useful at the moment as I have a ton of work to do for university, and has obviously made writing blog posts a bit difficult too.

I've had three essays and one presentation to do this month so I've been working like a house elf trying to get those done. I managed to get an extension for one of them so as with chest pain and tiredness I just couldn't manage all three of them. I managed to finish two film studies essays though which are marked as part of a portfolio with the presentation. I got really excited when I found out we only had two assignments for film studies but the sneaky lecturers put three assessments into one! Some real pain went into doing those as leaning over a laptop and loads of film theory books all week has had it's effect on my chest. But anyway, I've done all that now. All ready for a special Birthday week, which you will hear more about later. *wink, wink*

The day after I got rid of my chest lucky little me decided to throw up another pain. I had a serious amount of women's problems, which hasn't been fun. But I managed to get some medication to calm it all down ready for my birthday adventures, which requires me to be a bit more active and a bit further away from the bathroom than I'd usually be. There's been a good few times I've been curled up in a duvet crying "why me?" this week. Seriously why does everything happen to me? It feels like life hasn't given me a break recently. Well it better be planning to be giving me a break this week or I'll have something to say about it!

I'll leave you on the happy note that I'm about to go out with my lovely boyfriend for Valentine's Day and then off for a lovely weekend watching all my old baby videos, which my mum had copied to DVD just in time for my 21st Birthday. And then I'm going to be having a rather special birthday week, a lovely birthday meal with my mum and my lovely grandparents and another lovely birthday meal with my dad and then probably a week in bed recovering! But it's going to be a brilliant week and I'm very excited!


Happy Valentine's Day!!

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!

Updates

I'm currently melting in the heat wave we're having in the uk at the moment. My lungs are definitely feeling the heat and humidity but generally I've been feeling really good. I feel like I have a lot of energy and I've been really busy making full use of it.

I recently got an article about my transplant experience in my local newspaper following National Transplant week. If you're interested in reading it you can find it online here, http://www.gloucestercitizen.co.uk/die-transplant/story-19516621-detail/story.html

I'm really happy to get something published, even if I did tell myself I wanted to get some stories out there before getting a career out of the fact that I'm ill. That just doesn't sit we'll with me, I want to be known for being a great writer not for being an ill writer. But I've got an insight above other writers my age so I suppose I should use it. It's a reason why I'll get published over someone else, and in the writing industry that's definitely something to use to your advantage. At least an autobiography is something to fall back on if I'm not getting anything published. 

I got my results back of my first year at uni and I managed a 2.1 in 3 modules but because I was ill quite a lot this year I missed one of the assessments so I've been busy writing an essay about my favourite authors and how they've influenced me that I unfortunately have to give in in hard copy at the uni so that's a little day trip for next week! And then when that's marked I'll get my result for the 4th module but I'm pretty confident I'll get a 2.1 for that as well because I got a first for the other assessment in the module so if have to flunk the essay pretty badly to not get a 2.1. So I'm really happy with my results seeing as I've been in and out of hospital a lot this year, had glandular fever and loads of chest pain. I'm hoping to get a few more firsts next year though. I feel like I have to get a first overall because my brother got a 2.1 so I've got to beat him! 

I've also been trying to start a story every week over the summer so I have lots of stories to work on when I'm back at uni because I've pretty much given in everything I've got for first year so I can't resubmit any of that. So I have to start a few more stories so I have a good bit of work to give in for my portfolios this year. I've also got an anthology of short stories for my short story module next year which I've been really enjoying. It's got short stories from all the famous writers in. I usually struggle to read things that I'm forced to read but I'm really enjoying this. It's got lots of advice for writers and stuff in which is really helpful and really inspires me to do some more writing. It's called 'Telling Stories' by Joyce Carol Oates if you're interested. 

I know I said the next post would be a part 2 of my life in operations but I've been really busy lately with all my other writing but I will get round to it, I promise!

Transplant Awareness Week and Updates

Right, this week is transplant awareness week so if you go to your nearest hospital outpatients you'll probably find a group of lovely people raising awareness of transplantation. It would mean the absolute world to me if just one of you signs up to the organ donor register. If you're in the UK you can simply click on the link on the right side of this blog. If you're not, head to google. All you have to do is fill out a form. If your uncomfortable with a particular organ being taken, I know eyes are a bit of a weird one if you believe in an afterlife, you can just uncheck that box and you can just give away what you want to. Then they'll send you a card that you can just pop in your wallet and then you can start telling everyone else to do the same!

The circumstances in which you need to die for your organs to be able to be donated are so particular that the amount of organs available to people like me is really low. You have to be proclaimed brain dead but be technically alive on a heart and lung monitor. There is no activity in the brain but blood is still being bumped around the body. This is how it needs to be for your organs to be donated to somebody. What is really important is for you to TELL YOUR FAMILY that you are joining the organ donor list. Putting it on Facebook or something is a great way to raise awareness and also let's your friends and family know. Talk about it properly with your next of kin because a great number of donors on the donor register never have their organs leave their body because, quite understandably, their families aren't comfortable with it. It's a very upsetting time and they're not thinking about people like me, they're thinking about their son, brother or friend and who can blame them for wanting their loved one's body to remain in tact. But given the chance to talk about it with you, know that that's what you want, they're going to be a lot more willing to give the transplant the go ahead. 

At a visit to the hospital yesterday I met a boy, a little older than one, that had recently had a heart transplant. He now looks like any other boy his age. The only clue to his ordeal is the top of his scar just visible above his shirt. He'll be extremely lucky to make it into adulthood but he's been given a healthy, happy childhood that he wouldn't have had otherwise. He spent the time leading up to the transplant on a heart and lung monitor waiting for a matching organ. Time is short and more donors are needed. So signing up and getting your friends and family to do the same will make a huge difference. If you're not suitable to donate perhaps consider looking at donating them to medical research. Obviously I respect your right to decide what happens to your organs when you die and if donating your organs is not for you you're free to make that choice but if you're happy to donate, please sign up! 

As I've said I'm being considered for a double lung and heart transplant. For this the heart and lungs have to come from the same person so it's just a little bit harder to get a healthy heart and lungs from the same person. They do very few heart and lung transplants and they're usually done on people with congenital heart and lung diseases, which are rare. There are currently around 16 people on the active list and they tend to do around 4 a year. And still people are dying on the list. So donors are still needed quite desperately. 

On to updates, Sorry I've not posted this week. I've been having a little holiday in Swansea, enjoying the lovely sun we've been having here in England. Which was made even more enjoyable by the fact that my chest pain has got so much better. Unfortunately I had a bit of a sickness bug as well but you can't win them all! I was feeling quite happy and had a bit more energy than normal, which always makes a massive difference to my life. I'm having a good week, I think. I just hope this heat isn't going to kill me this week because my lungs don't tend to cope very well and I tend to need quite a lot of sleep and it's too hot to sleep in at the moment.

I've also been busy moving out of university and am now officially home for the summer. It's going to be nice seeing everyone a bit more now I've got time on my hands. Best of all I can now write on my own terms without being pressured to whip things out for assessments. I've got a few things once go and it's really nice to have some relaxing writing time without looking at the word count every few minutes. 

I'll be finishing part two of my life in operations this week, so keep a look out for that. 

Now go and join the organ donor register!

Thanks for reading. 

Updates

“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.