I’m writing this blog for 2 reasons: partly because I bet some of you have been wondering why I’ve been ‘ignoring’ you and not been around for the last few months (!), but mostly because I really need to get this out. If I write about it all, I think I may just be able to move on, and leave the memory resting, at least for a bit.
So here goes:
On April 24th I fell ill with an infection on my heart valve (we didn't know it was this until i was taken to hospital a week later). By the 25th I was REALLY ill, we reckoned it must be a fever. The 26th, even worse, stiffened up, couldn't get out of bed, if i had to go to the toilet it was SO painful getting there then sitting down and trying to stand up again. Also, I started to get black blood blisters and emboli’s on my hands. So I was taken to the out of hours Drs, who reckoned it must be foot and mouth, and told my mum to give me lots of fluids and let me rest. So we went home, and over the next few days i saw another 2 Drs as well as phlebotomists, who couldn't manage to get my blood. I developed an awful rash all over my body, and couldn't even sit up in bed because I had no energy (I had no appetite so barely ate anything in the whole week).
On the 30th the Doctor said I needed to go to hospital, so i was taken by ambulance to A&E. I don't remember too much detail to be honest, i was so ill. But that night i stayed in the Emergency Assessment Unit, with my mum sleeping in the chair beside me. The following day I saw loads of doctors, had a catheter put in and had a biopsy taken out of my leg (because of the rash) to see what was going on. I moved into lots of different rooms and had an Echocardiogram (ultrasound on the heart basically) to try and find out what was going on. The Doctors took my parents aside and told them that I had an infection on my mitral valve, and my parents told me. The Doctors didn’t know how the infection had got in, they said it could have been through the mouth (bleeding gums – I now have to use a soft toothbrush for life), through a cut or graze, or tampon, or my ear piercings. I’m not sure how long before it had been when I self-harmed, and I never told anyone, but it definitely could have been that, especially considering I never made sure blades were clean or anything like that, I didn’t care, it was urgent. I certainly WON’T be doing it ever again, it could have killed me.
I was taken to the Coronary Care Unit where I stayed until the 6th. I was put on a heart monitor for most of that time, and had IV drip antibiotics four times a day to try and get rid of the infection. I was told that I'd probably have to be in for four weeks having the antibiotics, which scared the hell out of me, considering I was terrified of hospitals, being ill, and being around others who were ill. But then on the 6th of May i was moved to a different ward with just women, which was much nicer, and i was starting to feel a little better (still couldn't walk or move). However, on the 8th May i woke up feeling…not right. So, once they realised my temperature was back up and my heart rate had picked up, they got the Doctors again and did another ultrasound. My mum arrived, and by that time i was feeling pretty damn awful. The ultrasound showed that my heart valve had actually collapsed due to all the vegetation. So i was moved back into Coronary Care, put on a heart monitor, and the ambulance was called to rush me to Glenfield, in Leicester, where they deal with hearts and lungs.
It took about an hour to get there and I was put in a general heart ward. I was under Madeleine McCann's dad – a cardiologist at Glenfield. I saw him not long after I arrived, and they did another Echo, which seemed to take forever. Eventually, they left, and then Dr McCann came back and told me the fluid was building up on my heart valve, which wasn't pumping the blood through very well because it had collapsed, so I'd need to have emergency open heart surgery either that night or the following day. You can imagine that was pretty scary to hear, but I felt so ill that I was just like "um…yeh ok".
So the next morning, on the 9th May, I was washed, sedated, and taken to theatre for about 8 or 9. I remember saying goodbye to my boyfriend and mum, trying not to think about the fact that there was 5% chance I wouldn't survive. I woke up in intensive care at 9 or 10pm, on the ventilator, with a breathing tube down my throat, and another tube up my nose to my stomach. I also had stomach drains in, which were the MOST PAINFUL thing I have ever felt when they were taken out. I think I screamed the whole of intensive care down when each one (there were 5) was pulled out. I was given loads of morphine over the next few days, as well as tramadol, paracetamol, ibuprofen – you name it. My sternum wasn't unbearably painful, but i had a button to press for extra morphine when i needed it. Eventually, after a couple of days and all my tubes were out and I'd tried drinking water, I was let out into a High Dependency Unit, which was on the ward i stayed on for the next 4 weeks. The 10th-16th are pretty hazy days as i was on morphine and slept so much, I was still in bed most of the time as my joints were so painful still and I couldn't walk. But eventually my catheter was taken out, my dressings were taken off my chest wound, I was taken off the temporary pace maker and morphine, and I began to walk a tiny bit. First, I could only lift my feet up a little bit on the spot, with the help of two physiotherapists. That was terrifying. But eventually my mum could take me to the toilet down the corridor, and I held on to the wall on the other side. I had absolutely no muscle left, and wasn't allowed to use my arms much (I'm still not until it's been twelve weeks) anyway because it puts pressure on the broken breastbone.
On the 16th I was taken into a private room on the same ward, which is where I stayed for the next 3 or so weeks. They gave me the room because I’d begun to get anxious, and when I got anxious my fingers went blue and I was cold all over (apparently). I have traits of social phobia, and that, on top of a hospital and illness phobia, was pretty SHIT. So I was SO happy when I was given the room. My mum actually hugged the nurse! I carried on having intravenous antibiotics for the whole time, four times a day, and got better and better. I walked more and more, very slowly, sometimes just to go to the ensuite bathroom on my own. Eventually I went down the corridor with my mum or sister or Harry to look out the windows, but I had to go really slowly, because I was incredibly unfit (a bit of a shock after being a Grade 8 ballet dancer 3 times a week) and my lungs were tiny after the operation and 3 weeks of doing nothing but lying in bed. I also hunched over, like an old person does, I think because I was scared of falling over (I was REALLY off balance), and I’d forgotten how to walk completely, so I didn’t realize I was doing it. Plus, it was painful to straighten up, and even now my scar feels tight sometimes if I try and stand up really straight. I walked more and more, and in the second week after the operation Harry took me on a small lap of the hospital, which took us at least 30 minutes (on the day of my discharge I think I could do it in about 4 minutes!), and we had to stop and sit down quite a few times so I could try and get my breath back.
At one point I had to have chest drains in my back to drain all the fluid. I was finding it pretty painful to breathe sometimes, and I think there was quite a lot of fluid on my lungs judging by the amount they drained off me. One was 6cm deep and one 4cm, and even now (it’s been almost 12 weeks now) I get some pain on the side where the 6cm drain went in. I had them in for 2 days, and drained 3 litres in the first hour! Lost a considerable amount of weight, which helped as I’d gone from my healthy 8.5 stone, to 10 stone, due to all the swelling. ( By the time I was discharged, I was down to 8st, still losing between 2-4lbs a day!). Luckily, unlike the stomach drains, the chest drains weren’t so painful when they came out, though it felt pretty damn weird! When they were first in though, I was shouting in agony, as my bones seemed to be grinding together, because of the sudden lack of fluid. My mum sometimes had to get someone to sit and hold my hand while she went out to cry, because she couldn’t bear to hear me moaning in pain. Luckily I got more morphine and felt better pretty quickly.
I had seven blood transfusions altogether – 2 in theatre, 1 in intensive care, 2 in High Dependency, 2 in my private room after about 2-3 weeks! I’d been scarily anaemic after it all, and when I had that final one, it was such a nice feeling, I finally had a bit more energy to walk and sit in my chair more, and I was a bit pink again, instead of deathly white! At first it felt a bit weird, having so much of other people’s blood, especially when I had lots of nose bleeds (I was on heparin injections along with aspirin to thin my blood), and I’d be thinking…this probably isn’t my own blood! I’m not allowed to give blood now that I’ve had transfusions, but I’m so incredibly grateful to all those people who do, because I would have died if I didn’t have any transfusions. So if anyone reading this has never given blood, PLEASE consider it, you could seriously help to keep someone alive!
I’ll never forget when I first went outside. It had been about 4 weeks altogether, apart from being transferred between ambulances and hospitals. 2 weeks after my surgery, my physiotherapist cousin came to visit, and she took me outside in a wheelchair, which was great. It was so incredibly bright though, I couldn’t handle the sun so had to wear huge sunglasses! If I can find some pictures of me outside for the first time I’ll put them up here.
Also after 2 weeks, I was told I needed a CT scan done, so that they could find out if the infection had spread anywhere else, including my brain. I was really scared by that, especially when they told me that if the results weren’t clear enough they’d have to put a camera down my throat to see how my valve was doing. So they did yet another procedure, where they shoved a huge needle/tube into my wrist, just under the skin, so that they could fill my veins with dye, which would show up on the scan. That was HORRIBLE, but when it was over I went down for the scan, which I nearly had a panic attack during, being put in and out of a tube. I was pretty happy when that was done, and found out later in the day that the results were clear 😀 I was so happy, I nearly cried. It would have been pretty terrifying if the infection had gone to my brain. So I didn’t have to have the camera down my throat after all 🙂
I’m so proud of myself after everything I’ve had done – CT scans, all sorts of other scans, heart ultrasounds (echo’s), x-rays, a catheter, a biopsy, blood tests every day, about 25-30 stitches altogether, venflons and canulars, stomach and chest drains, 7 blood transfusions. Not to mention all the injections, being on a heart monitor, temporary pace maker and three drip lines altogether! (one in my arm from the beginning, til surgery, when I had the second in my neck, then the final long-term one in my chest). The final one, the Hickman line, was an actual theatre procedure, where I was given LOADS of local anaesthetic, which eventually made me fall asleep (I woke up in Recovery). But my face was covered with a towel, and all I could feel was tugging and pulling which always felt weird, but I had someone to hold my hand so it was ok…
When it was finally around the time for my discharge, the nurses tried to get the Professor (my surgeon) to let me go home for a day when I was taken off my drip, so that my mum could monitor my temperature etc (she’s a nurse anyway) until I returned for my final discharge the day after. Eventually Prof agreed and I went home with my drip line still in for a day. It felt so amazing to be home and all I could say on the way was “Oh my God, everything’s so green!”. It was so shocking, and I’d been in since before the trees blossomed, so it was SO weird. You don’t realize how green everything is! The dog went absolutely crazy when I got home, she obviously remembered I was the person who used to walk her all the time! It was scary settling in, and going to sleep without loads of nurses and Doctors around. I couldn’t get comfy in my own bed and still hadn’t been sleeping lying down (you’re not allowed for a while after surgery due to risk of chest infection). So my mum propped me up with about 10 pillows and left the door open in case I needed her. At that point, I think I actually wanted to be back at hospital, in a familiar bed, with people around, because I was so scared. I’m used to it now though, but it definitely took a while to settle down.
So I went back the next day, they did the final blood test (to see if my white cell count was up again without the IV antibiotics), did an Electrocardiogram (where they use a machine to do a printout of heart rate etc), and they took my drip line out, which actually took ages, and there was blood everywhere 🙁 I was pretty scared, even though they gave me local anaesthetic. Finally it was out and I had a little stitch, which my mum took out after a few days. I still have scars from the huge stitches where they held the line in etc. But they’re nothing compared to my ‘zipper’ down my chest 🙂
After waiting for about 3 hours, I got the blood results back, which were really good! My white cell count was still going down, and I’d been put onto oral antibiotics for two weeks, just to be sure the infection was really gone. I could have jumped I was so happy. I just turned to my mum and said “I’ve kicked that infection in the ass!” haha. So we went to the discharge lounge and got my medication (aspirin for life, and furosemide (water tablets) for a while as well as loads of paracetamol, and antibiotics). It was so weird leaving, because I felt like I’d sort of become attached to the place after being there so long. It was such a nice hospital – they only deal with heart and lungs and it was much nicer and calmer than my hospital in town where I was first.
It was the worst experience I’ve ever had in my life, and probably the worst I’ll ever have, even though I’m only 18. It was such a traumatic experience but I’ve come out so much stronger. I feel like I can do pretty much anything now; if I can get through heart surgery, I can do anything else if I put my mind to it. After being terrified of hospitals, I’ve overcome that phobia (just about) at the same time as being incredibly ill. I feel so lucky to be alive, even if the anxiety is still there occasionally. I’m still going to uni in October, but I feel like I’ll cope ok. I am scared, and the idea that my heart might try to fail again doesn’t help my general anxiety. But I need to get on with life. Being so close to death makes you realize how little time you have left – no one knows when they’re going to die so there’s no point wasting time worrying, even though it seems like the only thing you can do sometimes, when really anxious. I have a list that I made in hospital of things I need to do before I die. Everytime I look at it it just reminds me that I need to get on with stuff, otherwise I’ll die without doing everything I want to, and that seems like a waste. Someone put us on this earth, and I’ve been given a second chance at life, so I’m going to use it in the best way I can.
We’ll never know how the infection got in. It could have been any of the things I already mentioned – an infected piercing, tampon, self-harm or even just a graze. The surgeon said afterwards that it was hard to tell if I had a defect on my heart valve from birth, as when he got to my heart, the valve was completely destroyed due to the vegetation. I’m having a case study written about me at Glenfield, as it’s the first time they’ve managed to repair a valve (instead of completely replacing it with a mechanical man-made one) which was so destroyed. It’s pretty amazing, and like I said, I’m so lucky. They were a bit worried pre-op that they’d have to use a mechanical one, as that requires Warfarin for life to thin the blood, and as I’m so young and have not had children yet, it could affect the rest of my life. I went for my first follow-up appointment the other day and had an x-ray, which they showed me. It was quite funny as I could clearly see about 6 wires tied around my breast bone, to hold it together. They’ll be there for life of course, but the surgeon said I won’t beep when I go through the thing at the airport!
It has affected my life quite a bit. I’m also now deaf in one ear due to the really strong antibiotics, but I guess it’s better than death! I do find it pretty irritating though, as it’s been nearly 13 weeks and my hearing is still non-existent in that ear. Just a loud, high pitched noise constantly.
If I ever get any signs of infection now, I have to rush to the Dr immediately to get antibiotics. I can’t have invasive dental work done, unless on antibiotics, and I’m pretty scared of using a tampon! Even though they reckon it probably wasn’t that. It’s scary though, and now I have quite a few empty holes in my ears, because I’m worried about wearing earrings!
Hopefully the valve will last forever. No one can guarantee it will, but hopefully I’ll be a bit older and cope with it better next time. No one can imagine how it feels to have heart surgery unless they’ve been through it, especially when you’re so young. I had a cardiac rehab exercise class today, and they were all old men apart from me. Everyone’s shocked when I tell them, because I look so young and healthy (despite the huge chest scar). I don’t know why it’s happened to me, though in a way I feel right about it now, like it’s showed me something. And it all happened at such a convenient time! Though I did have to miss two of my A Levels (I’ve already got two from last year, I’m on a sort of gap year, but luckily had unconditional offers from universities, meaning I was already accepted with just the grades I had).
I can’t help but think it must be a divine intervention! I used to cry a lot in hospital (when it stopped being so painful to cry), asking “why me?”. It feels like there are so many people in the world who deserve it more than me. But then I think how much more capable I am now of living my life to the full, because I’ve realized how close anyone can be to death at any time. I’m so proud of myself for getting through it, and it’s getting easier to cope with it all now. I think I’m beginning to come to terms with it slightly. Though sometimes I still wake up like “hang on a minute…I can’t believe I’ve had heart surgery!”. I’ll have a scar down my chest for life to remind me how lucky I am. I’ve heard that some people call it their “badge of honour” because of the second chance they’ve been given at life!
I still feel depressed every now and then, but when I’m really upset and want to self-harm, I just picture myself on the ventilator. It stops me straight away, I don’t want to go through that again. I just want to say to anyone who’s reading this: PLEASE try and use CLEAN blades if you have to do it, it’s not worth the risk!
So I’m settling back into normal life and like I said, starting a course of cardiac rehab classes which will hopefully take me back to near where my fitness levels were before. I still can’t run up the stairs or walk fast without getting incredibly out of breath fast though! And yesterday I woke up with quite a bit of pain as I’d stupidly turned onto my front in the night! Eeeek. But after 12 months I can pretty much forget it happened, besides the yearly heart scan. I’ve started driving again, a few weeks after I came home, and it’s nice to have that freedom back, though it was horrible at first. My eyesight was affected pretty badly by the anaesthetic, and I still see random blobs floating around sometimes, but they’re disappearing now. Mostly I think I just wasn’t used to having to focus on close and further away things quickly, so it felt strange driving, but now I’m fine.
I can’t believe I’ve got through all of it and I’m so proud of myself for coping. It's like someone said on a forum on the group 'Christianity anxiety' – "God never gives anyone more than they can handle".
It’s completely changed my way of thinking about life (most of the time!) and I try not to let myself get anxious because the last few months have shown me that worse things CAN happen.
If someone had said to me “you’ll have heart surgery before you turn 19” a few months ago, I would have either laughed at them or had a major anxiety attack. I heard on the news today that the success rate of heart surgery is way up, with a death rate of 1% or something. So that made me happy 🙂 We’re all so lucky we live in a society with modern medicine and technology. Otherwise I’m fairly sure I wouldn’t be sitting here writing this blog today.