Going to University With A Disability

It's rare that I get to say that real equality exists within an organisation but at university I really felt like everyone was really understanding and everything I needed was done but not in a way that made me feel excluded. Obviously I'm talking about my experience at Bath Spa University and with Disabled Students England. You're experience may vary depending on if you choose to study in Scotland, Wales or outside of the UK and universities will obviously vary too, though I found it was external organisations that really did all the work. 

Firstly, you go to a meeting to decide what help you need. Now when I first started university, I was doing a dance degree and I went to the meeting thinking, there is no way on earth I'm going to get any money out of these people. How wrong I was! I receieved hundreds of pounds worth of electrical equiptment on the basis that it is hard for me to get to a library when unwell and a home laptop, printer, scanner etc. would help me in this area. As I have a hearing impairment I was eligible for a notetaker as I struggle to keep up with what's happening in a lecture or classroom setting. She became my support assistant when I started using a wheelchair and she got me to all my classes and made things a lot easier. Probably the most helpful of all, they payed for a portion of my rent as I said I'd had to pay more for en-suite accommodation due to my disability. I by no means had to ask for any of this. They just went through what a normal day is like for me and started writing up all the recommendations. Then it was all delivered to my parents' address along with a tech guy to set it all up ready for me to take to university. It was that easy. It's not like claiming for Disability Living Allowance where you're made to look like fraud and it seems like they're trying their best to give you as little money as possible. They completely understand invisible illnesses and if you need any mental help I'm sure they'd be just as accommodating.

From the university's end, I found them to be less helpful to be honest. My lecturers and notetakers were all lovely and very understanding. My notetaker met with me before lectures started to chat about my needs and they always ask if you want to be seen with them and if you don't they're happy to sit at the back and if you did have a lecturer who was unhelpful they'd be happy to talk to them for you. The disabled students department was frankly pretty useless and never got anything done without the orders of the woman I had the meeting with before university started. (BIG TIP: get their email address before you leave in case you have any trouble with your uni). 

As far as money goes you will be able to claim benefits if you are not working even if you are doing a full time degree, so you will effectively be earning a wage on top of your loans. You will also be able to claim housing benefits if you are struggling. I did both of these and although I was not exactly rolling in money, I didn't have to worry about paying for my next shopping bill or being able to afford to make visits home.

The help is much better than the help you get at school or any help you'll get going into work later in life. They understood my invisible illness like no other organisation has and I think they're pretty brilliant to be honest. Not perfect, but compared to every other area of life, they definitely give disabled people a fair chance and an almost equal opportunity. Disability is definitely not a reason not to go to university. Even if you think you might struggle in the workplace later it's a great experience that, if you're chronically ill, you will never have to pay for. I'm never going to pay my loans back because to be honest I'll be quite lucky to be healthy enough to work for long enough, even with my transplant. I went to uni for the experience, not the degree. I love learning and I felt like I wasn't ready to leave education yet. Uni isn't for everyone but I think it was the best decision for me and I hope to continue my course after my transplant. 

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.

The Strangeness of Not Having a Pacemaker

Up until a month ago I'd had a pacemaker as long as I could remember but now, very suddenly, I don't have one. I originally had my pacemaker after heart surgery caused damage to my heart and caused it to slow down and stop when I was asleep. Unfortunately my fifth pacemaker became infected and needed to be removed and as my heart is doing okay on it's own it shouldn't need replacing. So now I'm not battery powered I've noticed some changes. A lot of the strange feelings I'd attributed to my pacemaker "kicking in" turns out to just be my heart. But I'm definitely getting less weird feelings, which I take as a plus.

The biggest change I've found is my sleeping pattern. For as long as I can remember I've struggled to switch off. It was rare for me to take less than an hour to fall asleep. But now, without my pacemaker, it's suddenly so easy to sleep! I can lie down in a bed, close my eyes, and be gone in 10 minutes. If I'd stayed awake for three days I couldn't have managed that before. I've taken longer to fall asleep after taking sleeping tablets. Mornings are a bit easier now too. I'm still far from being a morning person but I feel less grumpy in the mornings these days. It feels less like I'm dragging myself into consciousness and just feels a bit more natural. Getting to sleep easily is really improving my anxiety levels too. I'd always end up getting worked up about something in the early hours of the morning or suffering from unpleasant flashbacks. But now I'm getting to sleep before I have time to start worrying about anything. 

It's also very strange not having a box in my chest. It feels like something is missing even though it sort of feels like something is still there because the muscle has been well and truly chopped up and there's a lot of scar tissue and mangled nerve endings so the area is numb in places and very sensitive in others and the muscle is sore and slow to heal. I think it'll take a long time to heal up and probably won't ever heal fully. It feels strange to touch my chest and not have that chunk of metal there, though. It feels very flat even though I still have some swelling that's yet to go down.  

I'm so happy that I don't need another one. The thought of more surgery scares me because my body is weak and it's a fine balance keeping it happy. Something like surgery really messes everything up and I feel like surviving that kind of invasion is becoming less of a certainty. Even after getting through 17 surgeries, I don't take it for granted that I will get through them. So avoiding more surgery is just the best possible outcome and I must admit it's heartening too that somewhere within all the bad luck I've had, some good luck survives.

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! 

How to Survive in Hospital

After my recent four week stay in hospital I thought I'd share some tips on how to survive in hospital. 

1. The first huge thing is to get yourself a pair of earplugs and possibly a sleep mask and keep them in your handbag so if you're admitted in an emergency you know you have the tools to create quietness and darkness. I've stayed awake all night before now. 

2. Bring some home comforts. I'd suggest you bring your own pillows as you'll only be given one in hospital and they aren't the comfiest things. Small ones are good after surgery to prop yourself up into a good position that keeps the weight off any sore spots. I usually use a teddy bear under my arm to make my pacemaker site more comfy as they're softer, nicer and designed to be hugged! 

3. Bring your creams. It might seem like a strange luxury for hospital but I find my skin gets very dry and my elbows particularly get dry and sore from the stiff, starched sheets. It really feels good to put on some nice face cream, some good scented body creams and a good heavy duty dry skin cream for those extra dry bits (try a cream designed for ecsema or dermatis, although nothing medicated as they will lock it away if they see it.)

4. Find a bath and throw your bubble bath straight in. I find baths so much easier for keeping chest wounds/cannulas dry. Run it shallow if you're worried and relax. Get all the sticky residue from plasters and ecg stickers off and you'll feel so much more human. I brought in Lush bath bombs and came out smelling of flowers. It really makes a difference when you have to stay in for such a long time. 

5. Don't be afraid to ask for things. Ask to go down to the hospital Cafe for an hour or even outside if you feel up to it. If you're uncomfortable ask for a different mattress or for a cannula to be moved into a more comfortable place. Usually, nurses are only too happy to help. 

6. Load a tablet with stuff to watch/listen to/play. Most hospitals have free wifi. If that's the case, I recommend subscribing to Netflix or LoveFilm even if it's just for the time you're in hospital. Sign up to Spotify or an equivalent to listen to music or find a radio app. Download catch up service apps for the channels you watch most. If you don't have Internet then you can always buy films to keep on your tablet. Check any DVDs you own as some come with a digital copy, which you can download onto your laptop or tablet without having to repurchase. Find a mixture of games that use Internet and simple games you can play without as some parts of the hospital where you may be waiting for tests might have poor or no connection. Just don't forget to pack your chargers and go over your settings so that your device's battery is not being drained by anything running in the background. 

Some other essentials! 

A variety pack or a box of your favourite cereal makes breakfast a bit more interesting. A little squash bottle is super handy to jazz up your water, which isn't the tastiest or coldest tap water! Lip balm is a must, a like a nice smelly one you can put on your oxygen masks or tubing to mask the smell of plastic. If you're set on doing your own meds a useful tactic is to use pill boxes so the doctors don't have any choice other than to let you do them yourself because none of the nurses will know which drug is which. You come across super organised too and they know you know what you're doing so they'll be much more likely to be happy with the arrangement. 

I think that's all the tips I have, I hope some of these might be useful if you have to go to hospital for any reason. (Although I hope you don't!) 

Thanks for reading, updates coming soon but I'm enjoying being home! 

I'm home!

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

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

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

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

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

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

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

Pacemaker Problems!

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

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

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

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

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