'Til the River Runs Dry
If you are reading this then you need to know two things; this is not a short post and yes, I will talk about shit (or my inability to).
When I started this blog it was purely so I would not forget what happened while I was at the hospital because I had been seriously toying with the idea of writing a book about it all. But then people actually started reading the posts and I had to start worrying about what I could and couldn't say - either because I didn't want to offend people or because there are some things that are generally known as not something you tell other people. This for the same reasons that you would not announce that you had your periods as readily as you would a cold or flu.
However, if the last three years has taught me anything it is that we definitely need more awareness of just what people in my situation or similar go through, and that's not going to happen if no one talks about it. On top of that, as weird as it sounds, I want to remember all of this adventure.
I call it an 'adventure', and that might seem flippant but it is accurate. To me, an adventure is an experience/a series of experiences, during which a transition occurs and you emerge different in some way. It does not have to be life-altering or immediately obvious but trust me, it is there. It does not have to be something perfectly describable in words (even though I will try) because I will define it. I would rather that than it define me.
One thing you have to remember, not just for reading this but for everything, is that not all adventures are good nor do they necessarily end well. Nevertheless, adventures they are and I think that adventures should always be told from start to finish, with all of the good and bad times. Because every trial is just a triumph waiting to happen.
There is one thing that I have struggled with since I started posting on here and we started the fundraising for the BHF and that was people knowing my story. That must sound silly considering I am still doing this and, if you know me then you'll know, that you can ask me anything about the hospital and I will happily answer. For me, it felt a bit suffocating that everyone seemed to know everything about what went on in the hospital. I have never been an overly social person, I am used to my own company and therefore used to privacy in most things. And that was another reason that I did not post every single thing that happened; I wanted some of it to stay mine. My entire life someone has decided what I can and cannot do, whether that someone was a doctor, teacher, my mother or even my own body, someone has always said 'you can't'.
You can't get your ears pierced, you can't keep up with the other kids, you can't get changed in gym without turning away, you can't walk at the front with your friends, you can't win the sport's day, you can't remember all of that, you can't take ballet, you can't wear tops like that, you can't try smoking, you can't join in P.E classes, you can't go from registration to Science with everyone else (two flights), you can't be a police officer, you can't be anything but 'the wee lassie with the heart condition', you can't- you can't- you can't-
And then suddenly I had this journey to go on and it was 'you can't ever just go to hospital and it be simple eh?'
I've gone through my life with everything being too complicated, never being simple, never being something people got or wanted to get. So, I wasn't surprised, I'm used to people not knowing what's going on in there, what you actually go through once those doors close.
But when folk started reading this I was confronted, after twenty odd years, not just with medical professionals who were looking at me when they spoke and not my mother, but with people starting to become interested and ask about these things while seeing that 'with the heart thing' wasn't my last name. Since I hadn't had any major surgery like that since I was a child it was like being plunged into this world with hundreds of people in the waiting room with me and it was overwhelming. Yes, it was great but I had never realised that having the doctor look at me and make sure I understood was such a big deal and that part of me half wanted to keep that to myself. The other part that had been used to no one asking what was going on pushed back, feeling like I was just something shiny, like as soon as the novelty went then so would the interest. My life wasn't a novelty and neither was what was happening.
I was told when I was a child that if I kept growing at the rate I was then I'd be getting my valve replaced when I was fourteen. And when fourteen came and went I began to feel like no one was taking me seriously in the hospital. I was in pain and they just kept saying that there was nothing on the tests. This went on for years.
Then, not only am I being taken seriously, being treated like an adult, being respected by these medical professionals in Glasgow, people wanted to know what was happening, they wanted to know how I was doing, what I was going through. I was completely unprepared for the entire thing and so I did what I was used to - giving the lite version and smiling all the way through.
After the operation, when I was being bombarded with the aftercare I tried to explain this to my mum as I felt like I'd been jumping up and down my entire life, trying to get people to understand, to listen, ready to help them to get it all and no one cared. No doctors, no friends, no teachers, no one. And then suddenly it was like I was being encircled from every angle, people at me, demanding information, phones ringing, pulling at me and it was too much. But also a part of me thought, 'Fuck you, now you're ready I have to jump?'
And I guess that now it's easier to feel like that's calmed and I can deal with it. I haven't said any of this to dissuade anyone from talking to me, please don't think that, I just want to remember even that feeling because going through that was all part of the adventure.
I think it's probably about time that, when I tell one of these stories, I tell you the whole thing because while my instinct was to protect little things, little experiences and thoughts, and keep them mine what is that going to achieve? How can I expect anyone to understand these things if someone doesn't tell them? No one knows what these lives are like unless you're there when it happens and unfortunately you can't all be in the waiting room, asking questions and offering support, and so this is the next best thing. I left out the things 'no one wants to know' but that doesn't apply once you cross the threshold of the hospital so why should it apply to the story? I've had to wear an adult nappy into an operation because I've had my periods and I left that out because it's embarrassing or not 'appropriate' but hospital isn't appropriate or what you want to know. It's humiliating and as emotionally taxing as it is physically so I think after three years I can acknowledge that the 'pink bum' story is not the worst.
Thankfully though, you can relax, nothing bad happens here. No bums were flashed, pink or otherwise.
If you've been following my story then you'll know that this latest procedure was a 'never been done before' hybrid version of the previous two attempts. You'll also know that I was pretty sick by the time that this whole thing came around - so much so that without it I would have definitely died. This is not an exaggeration, when we told my consultant about the plan to go to Venice she advised us to go before the operation. I was made very aware that there was a very good chance that I wasn't going to survive this operation.
We had to go through to Dalmuir the day before the operation so that I could have tests in preparation for the following day and to be admitted to the ward that night to make sure I was ready for the early start.
For some reason that I still can't quite pin down I put it off until the last minute but the night before leaving for Dalmuir I wrote letters saying goodbye and sealed them. I remember putting them in a folder that had Winnie the Pooh on the front and back, one of a few I've had since I was around ten, perhaps younger. I felt like there was something meaningful in that but I was too exhausted to find it. Even now I still can't word it. If I was religious I could have found something in saying my final words on a Sunday, the day of rest. Perhaps it just feels like there should be there because of what it entailed but the truth is no one should have to write goodbye letters to their family at twenty-five.
The next morning was when it all really took off. My mum and I got the Helensburgh Central train into Dalmuir on an unusually sunny day. We dropped my mother's luggage off at the hotel reception and then went to the ward. It wasn't long before people started to arrive to take various readings, fluids and wheel me off to be prodded.
Nikki (Dr Walker), Elaine (SACCS nurse), Mr McArthur (surgeon) and his assistant Mr Peng arrived after that to discuss the procedure. This was when they made sure I understood what it entailed. I won't go into it far since I've already explained it a lot but in simple terms they would enter via the front, opening the rib-cage to do so, pierce the heart and insert the stent into the artery after which they'd set the valve in place inside the stent.
Then they detailed the risks - chiefly the artery could shatter (remember the calcification) and I'd bleed to death on the table while they just had to watch helplessly. In that instance Mr McArthur was prepared to attempt to replace the whole area.
There were many more but considering that I've spoken about them in length before I'll skip them.
They wanted/needed me to sign the consent form for the operation but also another form that consented to pictures and notes being taken of the procedure and possibly used in future for teaching. I took immense comfort in the knowledge that, no matter the outcome, I could help someone at some point, that even if the technology isn't here for me that it will be eventually and somehow I aided that. However, I think there was talk of a study or a case file being done - forgive me I get asked so many times to let my information be used in these things that I get them mixed up - whatever the reason I had to write down my age and hair colour. It was so surreal to be talking seriously about the chances that I might die or end up a vegetable one minute and then laughing about having green hair the next.
Everyone was working and so Nicole, Josslyn and Dean turned up later that night, bringing a McDonald's with them.
Stewart also turned up while I was munching my dinner before my nil-by-mouth kicked in however Dean and Josslyn had to leave to drive back through to Edinburgh for work the next day, leaving the four of us.
Everything was going relatively the same as the previous operation, except for the cancellation. The last time I somehow knew before we got there that it would be cancelled and then when it was I knew it'd go ahead a few days later but wouldn't work. This time I knew I wasn't going to die and I expected it to be successful. However, when my mum and sister left me for the night that's when things started to go against my expectations.
I know that before operations they want you to shower with this pink gel, the last time the nurse said, "Either tonight or in the morning," and I opted for that night only to be told I had to do it again in the morning anyway so this time I thought I'll just do it in the morning, screw doing it twice. Again, I was told no, I had to do it both times so I took my shower and settled in.
The night before the op they give you tablets to calm you down and pretty much knock you out so that you can get some sleep. The nurse had advised me to take my shower before taking my tablets because they would knock me out right away. The tablets have never worked on me the way they have others, ever. When I was a child in the Sick Kids they had to take a patient scheduled for a procedure after me before me because I was not passing out like I was supposed to be. So, when she said that I just internally scoffed like:
After showering I sat on my bed and waited for my medication that would "knock me out". Uh-huh, sure hen. The nurse told me not to get out of bed afterwards because they're strong stuff. Aye, okay then.
It was after she'd left that I looked to the chairs at the bottom of my bed and saw all of my stuff in a pile over them and thought about what my mum would say when she came back in the morning. And so, I decided to tidy up and stood up, in between the bed and the window, not stopping before I took a step towards them.
Except that I didn't go forward; I went sideways and collided with the ledge under the window. I held onto it and stood myself up straight, laughing that I had stood up too fast. I then gathered myself and tried again. This time I stumbled to the right into the bed and over-corrected to the left and then, trying to propel forward, slammed into the chairs themselves.
I think I must have been genuinely concerned for a moment because, as silly as it may sound, this had never happened to me before. The one thing I really don't like about operations is the feeling as you're starting to pass out when your body isn't quite under your control anymore, which is why I don't drink much because it's too much like being under general anaesthetic (GA).
I quickly sorted the mess and staggered back to bed, I was stuck between the great sleep I could possibly get out of this and not willing to admit that I was affected by them. What I really wasn't ready for was the drugs not just affecting me physically but mentally too.
I know for sure that I was talking to my sister at some point because I told her where my folder was, instead of telling my mum, if it was needed but what was said after that is beyond me. However, I am reliably informed that I was out my face and talking utter shite. If there were two things that people always commented on when it came to the hospital it was that I was never out cold when I was supposed to be and that I always survived or succeeded expectations. And yet, there I was passing out from the tablets that usually had nothing on me.
Was it possible that I actually might not survive this time?
I knew, really understood and accepted it to be true but I think perhaps I expected to walk into the hospital and the changes in my health that I'd noticed to immediately cease. As I fell asleep I considered that everything really had changed lately.
In the morning I had my second pink gel shower and wasn't allowed to eat anything and so was given my tablets.
I also took a couple of photos, or must have since my iPod puts the time as 8am that morning.
Now, I barely remember any of this so it's been told to me.
My mum arrived at half six while Nicole and Stewart came down an hour later. It was after that that Elaine came to see me and apparently I was out of it already. When the people from downstairs arrived to collect me I announced I needed to go to the toilet. I was advised not to go in there because of the state I was in with the tablets but I was determined that no damn tablets were gonna stop me going to the toilet and so Elaine helped me in there while my family waited outside with the staff.
It's strange what battles you pick when the outcome of the war isn't in your hands.
I do remember sitting on the toilet for a while purely to give my head a chance to get itself together and walk in a straight line.
I eventually came out and was being taken away.
It all happens so fast that we never seem to get a good chance to say goodbye - maybe for the last time - because the staff are talking to you and you don't want to miss what they're saying because it might be important but you also don't want your family to go without saying goodbye so it always ends in a sort of half-hug or wave that seems dismissive but it's not that at all, it's just done very quickly.
I don't know if it's the same for everyone but I never dream under GA, or I haven't in the past three years. Neither do I just blink and wake up again. I'm always aware of some darkness, it lasts a period of time where I'm aware of it. As to how aware I am or how long it's been there before I've become aware that it is I couldn't say. I don't hear anything or feel anything, it's not like I'm awake mid-operation but my eyes aren't open, I don't know how else to describe it except a fake darkness. It's not like when you close your eyes, it's lighter than that somehow, as if you just have a cover over your eyes. It's really strange and I think it happens not long before I wake up, what I mean is I think it's when I'm no longer under the GA effects but rather just sleeping in the afterglow of it. I'm never able to determine when I first wake up either I just know at some point it happened. I've been known to stand up in the hospital bed as a kid and pull my tube out, when I was in the last time my mum told the nurse on the ICU that I do that and she witnessed herself as. when I woke up the first thing I did was pull it out. I don't remember ever doing this.
My mum refused to leave the hotel after the last time so her, Janice, Nicole and Stewart waited the eight and a half hours until my mum's phone rang. It was Elaine. My mum couldn't answer it and so she handed it to Nicole who promptly handed it back and my mum was forced to answer it.
Apparently Stewart had gone for a cigarette just before my mum's phone rang and he came back to three women crying.
I was being taken to ICU so Elaine asked everyone to go up to a quiet room near the clinic to meet them. When they turned up Elaine and Nikki were both head-to-toe in scrubs and as they came along Nikki was taking her hat off. They took them in and told them everything: I had been stable all the way through the surgery, no emergencies had occurred, nothing had shattered, everything had gone as well as it could have but obviously I was not out of the woods yet.
My mum said it was the first time they'd left one of those rooms happy.
She also said that as they were leaving she asked if they were off now and they just laughed, they had a lot of paperwork to do. She joked that they could just go and she'd take it from here. If only, eh?
Mum, Janice, Nicole and Stewart went for a coffee while I was being prepared to see Mr McArthur in ICU which I don't remember at all. I was reminded later of talking to my mum and Janice but what we spoke about or for how long, again I've no idea. I don't remember Nicole and Stewart coming up afterwards.
They then left me to get a rest; they all went into Clydebank and then Mum and Janice went for dinner while Nicole and Stewart went to the gym and for a sleep. My mum had to phone a few times to remind the ICU staff that my skin was horrible and needed certain care.
I remember wakening up and it was dark, I was in a bed and there were walls on my right and left with a light somewhere on the other side of the room. I became aware of a woman going back and forward and I was slowly realising that this room didn't have a wall at the other side where I assume there would be a door because the woman was talking to someone walking away out of the end rather than a door. I tried to get my bearings but the lack of light was disorientating and the tablets kept knocking me out and so my eyes didn't get a chance to adjust to the lack of light.
I remember the woman telling me that my mum had phoned to tell her about my skin and I was just to tell her when I wanted to wash my face but I think I might have passed out again. I remember asking for my glasses which was pointless but it's quite disconcerting when you wake up after an operation and you automatically try to see properly. I think it's linked to your past survival instincts; you want to assess your surroundings and look for danger. I'm shortsighted so I always ask for my glasses when I wake up and they always tell me that I'll be falling asleep again but I insist because I can't adjust to my surroundings if I can't see them. And there is something calming about just seeing where you are even though it's pretty obvious I'm in a hospital bed in a room in a hospital - this is not a surprising turn of events - but you just need to see it.
You're always asked before the operation if there's anything you're allergic to and I always react the same way - there was a GA that made me ill when I was a kid, I threw up constantly, and butterfly stitches.
I remember being in pain and telling her that as she carefully washed all over me, they don't usually do that when it's been just a few hours but since I had my skin problems she did it earlier. She also helped me sit up and wash my face and put my Aveeno on. She gave me tablets and it was barely five minutes before I was throwing them up. I think she gave me them again and again I threw it up. I can't remember how many times it happened and I surprised myself by refusing anymore. I used to have really bad migraines when I was a kid that always culminated in me throwing up until I was ready to pass out and doing just that in a dark room. So, I'm used to functioning with migraines and I'm used to throwing up. No one likes throwing up but I'm surprised at myself not sticking with it longer except that I vaguely remember thinking 'stop trying to prove something, throwing up tablets or passing out doesn't make you weak, you proved that, idiot'.
I wish I could remember the name of the woman from the night before because even just helping me wash myself and giving me my glasses made everything so much better for me. I thought I'd been moved but I've been told that that was the same room I'd sat in in the dark the night before.
I think they gave me a different medication and the next thing I remember was wakening up in the morning to a completely different room. I woke up and the walls on either side of me were in fact glass walls to separate the beds but with curtains giving each patient privacy. That was why I didn't think my room had an end wall, beside it wasn't one room, it was a cubicle in a room or cubicles with a nurses station at the end of my bed.
I was sitting up and talking to the nurses, so much so they gave me toast and I kept it down. I remember one of them telling me something Nikki retold me when I got back to the main ward; that she (the nurse) had been there when they'd brought me back from the operating room and she'd said, "Oh my god, what did you do to her hair?!" And Nikki had to assure her than no, that wasn't the new colour for the disinfectant, I'd come in like that. They even got me into the chair beside my bed. That doesn't normally happen in ICU because everyone's too drugged up to try. The nurses were standing talking to me and I remember one just shaking her head, looking at the other nurse and looking back to me and saying, "You're so coherent, I can't believe it!"
I quickly remembered me two nights before, walking into the bed trying to get to the chairs before I said, "Yeah, medication never affects me the way it does other people."
Although I was sitting in the chair and suddenly started to feel exhausted and at the end of my bed, beside the nurses station, all of the nurses were standing discussing something and I didn't want to interrupt or try to get their attention and fail like an idiot because I just didn't have the energy to wave myself about and get nowhere. I remember looking at my bed and briefly wondering if I could do it myself and then shaking the idea, calling myself an idiot again. I even looked at it forlornly wondering why I'd ever left it. I eventually got someone's attention and when she started to walk over I felt such relief that I didn't have to hold myself up anymore and that I could sleep again that as I asked her if I could get back into bed I randomly burst out crying. Which of course meant they all swarmed around me asking what was wrong. The original lass said, "Oh don't cry, I'll start!" I tried to explain that I was just tired and apologised for crying, it seemed really important that they knew I wasn't someone who cried all the time. They told me not to apologise, that I'd been through an exhausting ordeal - emotionally and physically. I just nodded thinking that this wasn't from a few days ago, this was three years worth of emotion I didn't even know I had.
Surprisingly, I was moved to HDU that day, by around three o'clock. I was still attached to a medication machine by the line in my neck and the drains in my chests were hooked up to a machine on the side of my bed which was trying to get the fluid that had collected in my chest out. This is a normal thing that happens and you have to do it every time you get open-heart surgery, it was connected to me through two tubes into my chest. I'm not sure where about inside they go into, as a kid I thought it was my lungs but after this time I don't think it is and I'll tell you why later.
This was taken about twenty past four in HDU and you can see the tubes everywhere. They always sit you in your chair first as your bed is being made and I guess you can say it sets your mind at ease that your bed is completely fresh and it means you've gone from a bed to a chair again, which is a heavy physical toll, it still surprises me how much it takes out of you. For those that don't know the thing I'm hugging is just a towel rolled up, I hold it to me to put pressure on my sternum as I move and protect it. It comes in especially handy for sneezing which is genuinely the most frightening thing that happens during recovery.
Because of these machines you can't move from your bed, not that you want to anyway, but it means that the catheter you have in during the operation has to stay in. I swear, this is literally the only thing I don't care about having in, when they take it out (which you don't feel) I'm miffed. Imagine never having to get up to pee again, never having to pause something or move from a comfy position to pee. That was me, just chilling. You get the sensation of needing the toilet, it can go to absolutely bursting and it sticks around afterwards for a minute or so but I remember the first open-heart attempt this time saying to the nurse that I was going to pee myself and her just taking a step back and looking at something on the side of the bed and saying, "You are peeing." It starts off weird but then it becomes something to stop the nurses taking out, however the last time, after standing up with the physio I sat down and it pulled and it was unpleasant as hell.
One thing that HDU could really do without is the noise the drains make, it sounds like the sound a large fish tank makes. I don't know what that noise is but I guess a filtration system for the water. But it's irritating as hell. However, it has its purpose and on top of that I was given breathing exercises to do to try to help shift everything and prevent infection and I was to do them every half an hour. I was told later that I was the only person who was doing them and I just don't understand that; these things are not just to annoy you, they're are to stop you succumbing to an infection after surviving such a serious surgery. You hear about so many people who have died from 'complications after surgery', that means that they survived the trauma of surgery but something else got the better of them, and one of the biggest complication is infection. I was not surviving a surgery that all of these people have invested so much in, worked so hard (physically and emotionally because, let me tell you, these people really fucking care about you), that was successful, and then dying because I couldn't be bothered to cough a few times every half an hour.
Elaine came to see me in HDU just after six in the evening.
That night I settled in for a sleepless night due to how noisy they were. Although, it was okay in the end because my nurses were lovely. Tracy was on the day shift and she was brilliant. She said I was a delight to care for, so put that on my grave please.
And then there was Cat on the night shift.
The first night we spoke about Harry Potter, she'd been to Universal Studios to the Harry Potter section and we spoke about the films, the books, the theories and the houses! She was a Slytherin and I'm a Hufflepuff and those two house apparently get on the best!
As expected I didn't get a very good sleep and being in and out of sleep I caught the tail-end of a conversation in the corridor between two of the nurses I didn't know. They said there was a guy along the corridor who had been in the army or a marine (I can't remember which, I was still on drugs) and he'd been told out of the blue that he had a heart condition and needed an operation. What stuck with me was, "poor guy," and, "Well, aye, that's his life up in the air now, eh?" and I remember it because I didn't get what they meant until my mum explained that his career in the army/marines was over. That's the reality of what young people living with a heart condition can mean.
The next day Tracy came and gave me a Wispa she'd promised me the night before. She said that she was going to try to change her shift to see me the next day and taught me how to use the bed controls because she knew I wouldn't ask for help. I remember someone in the next room being very unwell and the nurses all rushing around looking very worried.
Nicole and Stewart had to go back through to Edinburgh soon, for work, and so they came up to see me quickly. Nicole had previously listened to my heart during a visit to A&E and so wanted to hear the difference.
That night Cat came back and was telling me that she'd told her partner that she was talking to a really nice patient and apparently that was me. I was really confused about how lovely these people were. I was sitting there afterwards thinking about how much easier it makes everything that's happening easier to deal with when the staff are so lovely.
I know that Janice was still staying with my mum in the hotel and my mum had a good night's sleep but knowing the noise she makes when she sleeps I can guess Janice didn't.
The next morning I was exhausted again with the drains still keeping me up. The ward doctor came around with a group of people, doing rounds, but for some reason they were struggling with their machine so he asked me what book I was reading since it was beside me but upside down. It was "Silence of the Lambs" by Thomas Harris and we started talking about 'Man Hunter' which was the original film based on "Red Dragon", the first Hannibal Lecter book. It wasn't favourably received and some years later was redone as "Red Dragon" with Ed Norton, Anthony Hopkins and Richard Armitage. He was determined that the director of 'Man Hunter' was the same as that for 'Miami Vice'. We ended up googling it as the rest tried to fix the machine. He was right in the end and they fixed it.
However he said I could get my drains out and then probably go to the main ward! That was not a pleasant experience. It involved two nurses standing at either side of me and pulling a tube each out of my body in one go. I don't mean little tubes, puny straw sized things. I mean the kind of tube you'd siphon petrol with. And the reason I don't think they came from my lungs is that they didn't pull once and then be done, they pulled as if collecting it after siphoning from a truck across the road and I felt it coming out from inside, in places I've never felt before and doubt I will again, until the next time.
I also had to say goodbye to the catheter... Until next time friend. I'll miss you.
I had to get more of the nebulisers that were to help prevent infection and were supposed to take ten minutes but took about forty minutes to over an hour for me. However, I think I figured out why, well after the fact. A few years ago I had to go on an exercise bike with a mask on which was attached to a machine with a large tube that measured how I breathed and other statistics like oxygen levels. He told me to watch how I was breathing because I was hyperventilating and I remember thinking that I wasn't, that was just how I breathed. I think over the years, since I started with a diminished lung capacity, I'd gotten used to breathing shallow and quick and then as my health had gotten worse so had my breathing. And then, when I was in hospital I wasn't taking breaths as deep as I could and therefore it took the bag longer and longer to be finished.
We all joked about my green hair until we saw the sheets I was leaving behind and how my oxygen tubes looked after I took them off.
So, I was taken to the main ward (before anyone saw the mess).
Which of course meant I could get my laptop and iPod back but also... More nebulisers! I actually didn't really mind them except that I couldn't wear my glasses.
Today I turn twenty-six and am not expected to need anything for five to ten years.
This week I'm going to a convention in Germany to meet people and actors from a TV show I like and then, when I go home, we're planning our trip to Venice.
The one I wasn't expected to live to see.
If ever you needed a representation of why we fund-raised for the British Heart Foundation here it is:
When I started this blog it was purely so I would not forget what happened while I was at the hospital because I had been seriously toying with the idea of writing a book about it all. But then people actually started reading the posts and I had to start worrying about what I could and couldn't say - either because I didn't want to offend people or because there are some things that are generally known as not something you tell other people. This for the same reasons that you would not announce that you had your periods as readily as you would a cold or flu.
However, if the last three years has taught me anything it is that we definitely need more awareness of just what people in my situation or similar go through, and that's not going to happen if no one talks about it. On top of that, as weird as it sounds, I want to remember all of this adventure.
I call it an 'adventure', and that might seem flippant but it is accurate. To me, an adventure is an experience/a series of experiences, during which a transition occurs and you emerge different in some way. It does not have to be life-altering or immediately obvious but trust me, it is there. It does not have to be something perfectly describable in words (even though I will try) because I will define it. I would rather that than it define me.
One thing you have to remember, not just for reading this but for everything, is that not all adventures are good nor do they necessarily end well. Nevertheless, adventures they are and I think that adventures should always be told from start to finish, with all of the good and bad times. Because every trial is just a triumph waiting to happen.
There is one thing that I have struggled with since I started posting on here and we started the fundraising for the BHF and that was people knowing my story. That must sound silly considering I am still doing this and, if you know me then you'll know, that you can ask me anything about the hospital and I will happily answer. For me, it felt a bit suffocating that everyone seemed to know everything about what went on in the hospital. I have never been an overly social person, I am used to my own company and therefore used to privacy in most things. And that was another reason that I did not post every single thing that happened; I wanted some of it to stay mine. My entire life someone has decided what I can and cannot do, whether that someone was a doctor, teacher, my mother or even my own body, someone has always said 'you can't'.
You can't get your ears pierced, you can't keep up with the other kids, you can't get changed in gym without turning away, you can't walk at the front with your friends, you can't win the sport's day, you can't remember all of that, you can't take ballet, you can't wear tops like that, you can't try smoking, you can't join in P.E classes, you can't go from registration to Science with everyone else (two flights), you can't be a police officer, you can't be anything but 'the wee lassie with the heart condition', you can't- you can't- you can't-
And then suddenly I had this journey to go on and it was 'you can't ever just go to hospital and it be simple eh?'
I've gone through my life with everything being too complicated, never being simple, never being something people got or wanted to get. So, I wasn't surprised, I'm used to people not knowing what's going on in there, what you actually go through once those doors close.
But when folk started reading this I was confronted, after twenty odd years, not just with medical professionals who were looking at me when they spoke and not my mother, but with people starting to become interested and ask about these things while seeing that 'with the heart thing' wasn't my last name. Since I hadn't had any major surgery like that since I was a child it was like being plunged into this world with hundreds of people in the waiting room with me and it was overwhelming. Yes, it was great but I had never realised that having the doctor look at me and make sure I understood was such a big deal and that part of me half wanted to keep that to myself. The other part that had been used to no one asking what was going on pushed back, feeling like I was just something shiny, like as soon as the novelty went then so would the interest. My life wasn't a novelty and neither was what was happening.
I was told when I was a child that if I kept growing at the rate I was then I'd be getting my valve replaced when I was fourteen. And when fourteen came and went I began to feel like no one was taking me seriously in the hospital. I was in pain and they just kept saying that there was nothing on the tests. This went on for years.
Then, not only am I being taken seriously, being treated like an adult, being respected by these medical professionals in Glasgow, people wanted to know what was happening, they wanted to know how I was doing, what I was going through. I was completely unprepared for the entire thing and so I did what I was used to - giving the lite version and smiling all the way through.
After the operation, when I was being bombarded with the aftercare I tried to explain this to my mum as I felt like I'd been jumping up and down my entire life, trying to get people to understand, to listen, ready to help them to get it all and no one cared. No doctors, no friends, no teachers, no one. And then suddenly it was like I was being encircled from every angle, people at me, demanding information, phones ringing, pulling at me and it was too much. But also a part of me thought, 'Fuck you, now you're ready I have to jump?'
And I guess that now it's easier to feel like that's calmed and I can deal with it. I haven't said any of this to dissuade anyone from talking to me, please don't think that, I just want to remember even that feeling because going through that was all part of the adventure.
I think it's probably about time that, when I tell one of these stories, I tell you the whole thing because while my instinct was to protect little things, little experiences and thoughts, and keep them mine what is that going to achieve? How can I expect anyone to understand these things if someone doesn't tell them? No one knows what these lives are like unless you're there when it happens and unfortunately you can't all be in the waiting room, asking questions and offering support, and so this is the next best thing. I left out the things 'no one wants to know' but that doesn't apply once you cross the threshold of the hospital so why should it apply to the story? I've had to wear an adult nappy into an operation because I've had my periods and I left that out because it's embarrassing or not 'appropriate' but hospital isn't appropriate or what you want to know. It's humiliating and as emotionally taxing as it is physically so I think after three years I can acknowledge that the 'pink bum' story is not the worst.
Thankfully though, you can relax, nothing bad happens here. No bums were flashed, pink or otherwise.
If you've been following my story then you'll know that this latest procedure was a 'never been done before' hybrid version of the previous two attempts. You'll also know that I was pretty sick by the time that this whole thing came around - so much so that without it I would have definitely died. This is not an exaggeration, when we told my consultant about the plan to go to Venice she advised us to go before the operation. I was made very aware that there was a very good chance that I wasn't going to survive this operation.
We had to go through to Dalmuir the day before the operation so that I could have tests in preparation for the following day and to be admitted to the ward that night to make sure I was ready for the early start.
For some reason that I still can't quite pin down I put it off until the last minute but the night before leaving for Dalmuir I wrote letters saying goodbye and sealed them. I remember putting them in a folder that had Winnie the Pooh on the front and back, one of a few I've had since I was around ten, perhaps younger. I felt like there was something meaningful in that but I was too exhausted to find it. Even now I still can't word it. If I was religious I could have found something in saying my final words on a Sunday, the day of rest. Perhaps it just feels like there should be there because of what it entailed but the truth is no one should have to write goodbye letters to their family at twenty-five.
The next morning was when it all really took off. My mum and I got the Helensburgh Central train into Dalmuir on an unusually sunny day. We dropped my mother's luggage off at the hotel reception and then went to the ward. It wasn't long before people started to arrive to take various readings, fluids and wheel me off to be prodded.
Nikki (Dr Walker), Elaine (SACCS nurse), Mr McArthur (surgeon) and his assistant Mr Peng arrived after that to discuss the procedure. This was when they made sure I understood what it entailed. I won't go into it far since I've already explained it a lot but in simple terms they would enter via the front, opening the rib-cage to do so, pierce the heart and insert the stent into the artery after which they'd set the valve in place inside the stent.
Then they detailed the risks - chiefly the artery could shatter (remember the calcification) and I'd bleed to death on the table while they just had to watch helplessly. In that instance Mr McArthur was prepared to attempt to replace the whole area.
There were many more but considering that I've spoken about them in length before I'll skip them.
They wanted/needed me to sign the consent form for the operation but also another form that consented to pictures and notes being taken of the procedure and possibly used in future for teaching. I took immense comfort in the knowledge that, no matter the outcome, I could help someone at some point, that even if the technology isn't here for me that it will be eventually and somehow I aided that. However, I think there was talk of a study or a case file being done - forgive me I get asked so many times to let my information be used in these things that I get them mixed up - whatever the reason I had to write down my age and hair colour. It was so surreal to be talking seriously about the chances that I might die or end up a vegetable one minute and then laughing about having green hair the next.
Everyone was working and so Nicole, Josslyn and Dean turned up later that night, bringing a McDonald's with them.
Everything was going relatively the same as the previous operation, except for the cancellation. The last time I somehow knew before we got there that it would be cancelled and then when it was I knew it'd go ahead a few days later but wouldn't work. This time I knew I wasn't going to die and I expected it to be successful. However, when my mum and sister left me for the night that's when things started to go against my expectations.
I know that before operations they want you to shower with this pink gel, the last time the nurse said, "Either tonight or in the morning," and I opted for that night only to be told I had to do it again in the morning anyway so this time I thought I'll just do it in the morning, screw doing it twice. Again, I was told no, I had to do it both times so I took my shower and settled in.
The night before the op they give you tablets to calm you down and pretty much knock you out so that you can get some sleep. The nurse had advised me to take my shower before taking my tablets because they would knock me out right away. The tablets have never worked on me the way they have others, ever. When I was a child in the Sick Kids they had to take a patient scheduled for a procedure after me before me because I was not passing out like I was supposed to be. So, when she said that I just internally scoffed like:
It was after she'd left that I looked to the chairs at the bottom of my bed and saw all of my stuff in a pile over them and thought about what my mum would say when she came back in the morning. And so, I decided to tidy up and stood up, in between the bed and the window, not stopping before I took a step towards them.
Except that I didn't go forward; I went sideways and collided with the ledge under the window. I held onto it and stood myself up straight, laughing that I had stood up too fast. I then gathered myself and tried again. This time I stumbled to the right into the bed and over-corrected to the left and then, trying to propel forward, slammed into the chairs themselves.
I think I must have been genuinely concerned for a moment because, as silly as it may sound, this had never happened to me before. The one thing I really don't like about operations is the feeling as you're starting to pass out when your body isn't quite under your control anymore, which is why I don't drink much because it's too much like being under general anaesthetic (GA).
I quickly sorted the mess and staggered back to bed, I was stuck between the great sleep I could possibly get out of this and not willing to admit that I was affected by them. What I really wasn't ready for was the drugs not just affecting me physically but mentally too.
I know for sure that I was talking to my sister at some point because I told her where my folder was, instead of telling my mum, if it was needed but what was said after that is beyond me. However, I am reliably informed that I was out my face and talking utter shite. If there were two things that people always commented on when it came to the hospital it was that I was never out cold when I was supposed to be and that I always survived or succeeded expectations. And yet, there I was passing out from the tablets that usually had nothing on me.
Was it possible that I actually might not survive this time?
I knew, really understood and accepted it to be true but I think perhaps I expected to walk into the hospital and the changes in my health that I'd noticed to immediately cease. As I fell asleep I considered that everything really had changed lately.
In the morning I had my second pink gel shower and wasn't allowed to eat anything and so was given my tablets.
I also took a couple of photos, or must have since my iPod puts the time as 8am that morning.
My mum arrived at half six while Nicole and Stewart came down an hour later. It was after that that Elaine came to see me and apparently I was out of it already. When the people from downstairs arrived to collect me I announced I needed to go to the toilet. I was advised not to go in there because of the state I was in with the tablets but I was determined that no damn tablets were gonna stop me going to the toilet and so Elaine helped me in there while my family waited outside with the staff.
It's strange what battles you pick when the outcome of the war isn't in your hands.
I do remember sitting on the toilet for a while purely to give my head a chance to get itself together and walk in a straight line.
I eventually came out and was being taken away.
It all happens so fast that we never seem to get a good chance to say goodbye - maybe for the last time - because the staff are talking to you and you don't want to miss what they're saying because it might be important but you also don't want your family to go without saying goodbye so it always ends in a sort of half-hug or wave that seems dismissive but it's not that at all, it's just done very quickly.
I don't know if it's the same for everyone but I never dream under GA, or I haven't in the past three years. Neither do I just blink and wake up again. I'm always aware of some darkness, it lasts a period of time where I'm aware of it. As to how aware I am or how long it's been there before I've become aware that it is I couldn't say. I don't hear anything or feel anything, it's not like I'm awake mid-operation but my eyes aren't open, I don't know how else to describe it except a fake darkness. It's not like when you close your eyes, it's lighter than that somehow, as if you just have a cover over your eyes. It's really strange and I think it happens not long before I wake up, what I mean is I think it's when I'm no longer under the GA effects but rather just sleeping in the afterglow of it. I'm never able to determine when I first wake up either I just know at some point it happened. I've been known to stand up in the hospital bed as a kid and pull my tube out, when I was in the last time my mum told the nurse on the ICU that I do that and she witnessed herself as. when I woke up the first thing I did was pull it out. I don't remember ever doing this.
My mum refused to leave the hotel after the last time so her, Janice, Nicole and Stewart waited the eight and a half hours until my mum's phone rang. It was Elaine. My mum couldn't answer it and so she handed it to Nicole who promptly handed it back and my mum was forced to answer it.
"Sharon, it's Elaine. Taylor's fine, she's stable. The surgery is over."
Apparently Stewart had gone for a cigarette just before my mum's phone rang and he came back to three women crying.
I was being taken to ICU so Elaine asked everyone to go up to a quiet room near the clinic to meet them. When they turned up Elaine and Nikki were both head-to-toe in scrubs and as they came along Nikki was taking her hat off. They took them in and told them everything: I had been stable all the way through the surgery, no emergencies had occurred, nothing had shattered, everything had gone as well as it could have but obviously I was not out of the woods yet.
My mum said it was the first time they'd left one of those rooms happy.
She also said that as they were leaving she asked if they were off now and they just laughed, they had a lot of paperwork to do. She joked that they could just go and she'd take it from here. If only, eh?
Mum, Janice, Nicole and Stewart went for a coffee while I was being prepared to see Mr McArthur in ICU which I don't remember at all. I was reminded later of talking to my mum and Janice but what we spoke about or for how long, again I've no idea. I don't remember Nicole and Stewart coming up afterwards.
They then left me to get a rest; they all went into Clydebank and then Mum and Janice went for dinner while Nicole and Stewart went to the gym and for a sleep. My mum had to phone a few times to remind the ICU staff that my skin was horrible and needed certain care.
I remember wakening up and it was dark, I was in a bed and there were walls on my right and left with a light somewhere on the other side of the room. I became aware of a woman going back and forward and I was slowly realising that this room didn't have a wall at the other side where I assume there would be a door because the woman was talking to someone walking away out of the end rather than a door. I tried to get my bearings but the lack of light was disorientating and the tablets kept knocking me out and so my eyes didn't get a chance to adjust to the lack of light.
I remember the woman telling me that my mum had phoned to tell her about my skin and I was just to tell her when I wanted to wash my face but I think I might have passed out again. I remember asking for my glasses which was pointless but it's quite disconcerting when you wake up after an operation and you automatically try to see properly. I think it's linked to your past survival instincts; you want to assess your surroundings and look for danger. I'm shortsighted so I always ask for my glasses when I wake up and they always tell me that I'll be falling asleep again but I insist because I can't adjust to my surroundings if I can't see them. And there is something calming about just seeing where you are even though it's pretty obvious I'm in a hospital bed in a room in a hospital - this is not a surprising turn of events - but you just need to see it.
You're always asked before the operation if there's anything you're allergic to and I always react the same way - there was a GA that made me ill when I was a kid, I threw up constantly, and butterfly stitches.
I remember being in pain and telling her that as she carefully washed all over me, they don't usually do that when it's been just a few hours but since I had my skin problems she did it earlier. She also helped me sit up and wash my face and put my Aveeno on. She gave me tablets and it was barely five minutes before I was throwing them up. I think she gave me them again and again I threw it up. I can't remember how many times it happened and I surprised myself by refusing anymore. I used to have really bad migraines when I was a kid that always culminated in me throwing up until I was ready to pass out and doing just that in a dark room. So, I'm used to functioning with migraines and I'm used to throwing up. No one likes throwing up but I'm surprised at myself not sticking with it longer except that I vaguely remember thinking 'stop trying to prove something, throwing up tablets or passing out doesn't make you weak, you proved that, idiot'.
I wish I could remember the name of the woman from the night before because even just helping me wash myself and giving me my glasses made everything so much better for me. I thought I'd been moved but I've been told that that was the same room I'd sat in in the dark the night before.
I think they gave me a different medication and the next thing I remember was wakening up in the morning to a completely different room. I woke up and the walls on either side of me were in fact glass walls to separate the beds but with curtains giving each patient privacy. That was why I didn't think my room had an end wall, beside it wasn't one room, it was a cubicle in a room or cubicles with a nurses station at the end of my bed.
I was sitting up and talking to the nurses, so much so they gave me toast and I kept it down. I remember one of them telling me something Nikki retold me when I got back to the main ward; that she (the nurse) had been there when they'd brought me back from the operating room and she'd said, "Oh my god, what did you do to her hair?!" And Nikki had to assure her than no, that wasn't the new colour for the disinfectant, I'd come in like that. They even got me into the chair beside my bed. That doesn't normally happen in ICU because everyone's too drugged up to try. The nurses were standing talking to me and I remember one just shaking her head, looking at the other nurse and looking back to me and saying, "You're so coherent, I can't believe it!"
I quickly remembered me two nights before, walking into the bed trying to get to the chairs before I said, "Yeah, medication never affects me the way it does other people."
Although I was sitting in the chair and suddenly started to feel exhausted and at the end of my bed, beside the nurses station, all of the nurses were standing discussing something and I didn't want to interrupt or try to get their attention and fail like an idiot because I just didn't have the energy to wave myself about and get nowhere. I remember looking at my bed and briefly wondering if I could do it myself and then shaking the idea, calling myself an idiot again. I even looked at it forlornly wondering why I'd ever left it. I eventually got someone's attention and when she started to walk over I felt such relief that I didn't have to hold myself up anymore and that I could sleep again that as I asked her if I could get back into bed I randomly burst out crying. Which of course meant they all swarmed around me asking what was wrong. The original lass said, "Oh don't cry, I'll start!" I tried to explain that I was just tired and apologised for crying, it seemed really important that they knew I wasn't someone who cried all the time. They told me not to apologise, that I'd been through an exhausting ordeal - emotionally and physically. I just nodded thinking that this wasn't from a few days ago, this was three years worth of emotion I didn't even know I had.
Surprisingly, I was moved to HDU that day, by around three o'clock. I was still attached to a medication machine by the line in my neck and the drains in my chests were hooked up to a machine on the side of my bed which was trying to get the fluid that had collected in my chest out. This is a normal thing that happens and you have to do it every time you get open-heart surgery, it was connected to me through two tubes into my chest. I'm not sure where about inside they go into, as a kid I thought it was my lungs but after this time I don't think it is and I'll tell you why later.
This was taken about twenty past four in HDU and you can see the tubes everywhere. They always sit you in your chair first as your bed is being made and I guess you can say it sets your mind at ease that your bed is completely fresh and it means you've gone from a bed to a chair again, which is a heavy physical toll, it still surprises me how much it takes out of you. For those that don't know the thing I'm hugging is just a towel rolled up, I hold it to me to put pressure on my sternum as I move and protect it. It comes in especially handy for sneezing which is genuinely the most frightening thing that happens during recovery.
Because of these machines you can't move from your bed, not that you want to anyway, but it means that the catheter you have in during the operation has to stay in. I swear, this is literally the only thing I don't care about having in, when they take it out (which you don't feel) I'm miffed. Imagine never having to get up to pee again, never having to pause something or move from a comfy position to pee. That was me, just chilling. You get the sensation of needing the toilet, it can go to absolutely bursting and it sticks around afterwards for a minute or so but I remember the first open-heart attempt this time saying to the nurse that I was going to pee myself and her just taking a step back and looking at something on the side of the bed and saying, "You are peeing." It starts off weird but then it becomes something to stop the nurses taking out, however the last time, after standing up with the physio I sat down and it pulled and it was unpleasant as hell.
One thing that HDU could really do without is the noise the drains make, it sounds like the sound a large fish tank makes. I don't know what that noise is but I guess a filtration system for the water. But it's irritating as hell. However, it has its purpose and on top of that I was given breathing exercises to do to try to help shift everything and prevent infection and I was to do them every half an hour. I was told later that I was the only person who was doing them and I just don't understand that; these things are not just to annoy you, they're are to stop you succumbing to an infection after surviving such a serious surgery. You hear about so many people who have died from 'complications after surgery', that means that they survived the trauma of surgery but something else got the better of them, and one of the biggest complication is infection. I was not surviving a surgery that all of these people have invested so much in, worked so hard (physically and emotionally because, let me tell you, these people really fucking care about you), that was successful, and then dying because I couldn't be bothered to cough a few times every half an hour.
Elaine came to see me in HDU just after six in the evening.
That night I settled in for a sleepless night due to how noisy they were. Although, it was okay in the end because my nurses were lovely. Tracy was on the day shift and she was brilliant. She said I was a delight to care for, so put that on my grave please.
And then there was Cat on the night shift.
As expected I didn't get a very good sleep and being in and out of sleep I caught the tail-end of a conversation in the corridor between two of the nurses I didn't know. They said there was a guy along the corridor who had been in the army or a marine (I can't remember which, I was still on drugs) and he'd been told out of the blue that he had a heart condition and needed an operation. What stuck with me was, "poor guy," and, "Well, aye, that's his life up in the air now, eh?" and I remember it because I didn't get what they meant until my mum explained that his career in the army/marines was over. That's the reality of what young people living with a heart condition can mean.
The next day Tracy came and gave me a Wispa she'd promised me the night before. She said that she was going to try to change her shift to see me the next day and taught me how to use the bed controls because she knew I wouldn't ask for help. I remember someone in the next room being very unwell and the nurses all rushing around looking very worried.
Nicole and Stewart had to go back through to Edinburgh soon, for work, and so they came up to see me quickly. Nicole had previously listened to my heart during a visit to A&E and so wanted to hear the difference.
That night Cat came back and was telling me that she'd told her partner that she was talking to a really nice patient and apparently that was me. I was really confused about how lovely these people were. I was sitting there afterwards thinking about how much easier it makes everything that's happening easier to deal with when the staff are so lovely.
I know that Janice was still staying with my mum in the hotel and my mum had a good night's sleep but knowing the noise she makes when she sleeps I can guess Janice didn't.
The next morning I was exhausted again with the drains still keeping me up. The ward doctor came around with a group of people, doing rounds, but for some reason they were struggling with their machine so he asked me what book I was reading since it was beside me but upside down. It was "Silence of the Lambs" by Thomas Harris and we started talking about 'Man Hunter' which was the original film based on "Red Dragon", the first Hannibal Lecter book. It wasn't favourably received and some years later was redone as "Red Dragon" with Ed Norton, Anthony Hopkins and Richard Armitage. He was determined that the director of 'Man Hunter' was the same as that for 'Miami Vice'. We ended up googling it as the rest tried to fix the machine. He was right in the end and they fixed it.
However he said I could get my drains out and then probably go to the main ward! That was not a pleasant experience. It involved two nurses standing at either side of me and pulling a tube each out of my body in one go. I don't mean little tubes, puny straw sized things. I mean the kind of tube you'd siphon petrol with. And the reason I don't think they came from my lungs is that they didn't pull once and then be done, they pulled as if collecting it after siphoning from a truck across the road and I felt it coming out from inside, in places I've never felt before and doubt I will again, until the next time.
I also had to say goodbye to the catheter... Until next time friend. I'll miss you.
I had to get more of the nebulisers that were to help prevent infection and were supposed to take ten minutes but took about forty minutes to over an hour for me. However, I think I figured out why, well after the fact. A few years ago I had to go on an exercise bike with a mask on which was attached to a machine with a large tube that measured how I breathed and other statistics like oxygen levels. He told me to watch how I was breathing because I was hyperventilating and I remember thinking that I wasn't, that was just how I breathed. I think over the years, since I started with a diminished lung capacity, I'd gotten used to breathing shallow and quick and then as my health had gotten worse so had my breathing. And then, when I was in hospital I wasn't taking breaths as deep as I could and therefore it took the bag longer and longer to be finished.
So, I was taken to the main ward (before anyone saw the mess).
Which of course meant I could get my laptop and iPod back but also... More nebulisers! I actually didn't really mind them except that I couldn't wear my glasses.
At this point I wanted an early night because I hoped that because the drains had gone I would get some much needed peace.
Which was not the case, that would have been too easy, of course. Early Saturday morning I woke up in agony and they had to call someone to come and see me. I was in tears and trying not to scream as my shoulder felt like it was being stabbed through with something sharp.
As I thought it was the dreaded nerve pain I'd had to deal with the last time but it felt so much worse. He asked me, on a scale of 1 to 5, how bad it was and I immediately said, through sobbing, "Five, please make it stop, please, please." He gave me a muscle relaxant hoping that that would make me sleep but since it was nerve pain there was nothing that would touch it and I just had to ride it out. I asked for a sleeping tablet and was denied that too. That's when I remembered what I had done the last time so I picked up my pillow, walked to the chair, sat down, put the pillow on the table in front of it and planted my face in it. I fell asleep like that almost immediately and it was the only way it would stop hurting enough. I woke up barely a few hours later when a nurse came in to give me medication and then promptly went back to sleep like that.
That morning my mum helped me shower for the first time since I went under.
It just felt so good to be clean, get new pyjamas on and do my hair. Although after it there was talk of giving me a laxative because I hadn't done anything since the night before but I think they may have misunderstood and thought I hadn't done anything at all. It's all the drugs they give you, they mess with your digestive system. The last time I was in I ended up with a UTI and that was like trying to piss a stone it was so sore. But there was no bloody way anyone was getting anywhere near my arse! I managed to that day and sent my mum the poop emoji from the toilet and heard her laughing. It's the wee things in life, eh? We just ignored the green stains everywhere in the shower and called it even. No one threatens putting anything near my bum and walks away with a shower not covered in green dye.
My mum went out for lunch with her friend and then came back with my auntie Jackie to see me, she brought me a pumpkin (I'm not a flowers person) balloons and a book!
By this point I was taking walks around the ward, trying to get to different checkpoints on the walking route. (Not gonna lie I did them all on the first day but I put my iPod in and took a few laps when I was bored.) And I saw this on the nurses station.
That night sleeping was a little easier but still agony meaning I slept in and out of the next morning.
That morning I went for another walk, wishing I could go out of the ward, possibly just down to the gift shop and look around. I was beginning to get cabin fever. On my way back I saw a guy I recognised from HDU - it was the army guy who had his operation the same day as me. He was walking slowly and holding onto the wall and I briefly thought, as I sauntered passed him completely fine, that I didn't see why he was like that. He was a young guy, apparently with a wife and new kid, and then the look on his face registered in my head a few seconds after I'd seen it. It was total emotional turmoil and some healing can't be helped with drugs and physiotherapy. There was no denying that the proverbial arse had fallen out of his world. It's strange but, at time's like that I think myself lucky that I've never known any different.
My mum told me that as she was coming up in the lift there was an elderly woman and two women with her, they were talking to her, saying everything would be fine. My mum decided to neb in and spoke to them saying, "My daughter came in on Monday, she's getting out soon, you'll be fine, they're brilliant here!" And they sort of nodded but she didn't look reassured. However, Mum chummed me on another walk around the ward (I was really bored) and we ran into them and my mum said, "This is my daughter." And they all just looked at me and their faces completely changed. The woman who was going in for surgery was smiling at me and seemed lifted a little. As shan as it is I just hoped she didn't run into the young guy because it really hurt to look at him, as if he was completely lost, without hope. And this woman needed hope.
On our way back to the ward a man being wheeled along put his hand out to me and said, "I love your hair, hen." He then turned to the porter and said, "Bloody beautiful." As I walked away all I could think was, "Celtic fan."
It was later that day that a couple of medical students came around and tested themselves by doing a timed check-up on me and guessing what I had then going away to look at my file and seeing if they had it correct. Unfortunately, they'd missed the scar that runs around my side from a previous surgery and then came back to ask me about it.
That night I walked to the nurses station to ask for water because I hate buzzing it when I don't have to and one of them asked if I wanted more tablets because I hadn't had any since midday (this was past midnight) and I said no. She just stared at me like I'd spoken French and when I said I wasn't in pain they looked at each other. And then another woman, who had been there when I was in agony and tears with my shoulder said, "You're looking phenomenal!" I was like, "I am?" And then the nurse told her I hadn't had my main tablets since midday and they all asked if I was in any pain so I shook my head and walked back.
The one thing I don't think people get is how much you actually use your sternum in everyday life. You're not allowed to lift a certain weight which equates to a kettle-full so whenever I got water I asked for half a jug and sometimes got a full one then had to ask someone to come and pour some out for me. I thought it would have been a good idea to have jugs half the size of regular ones so the nurses didn't have to remember to half fill it.
It was then that I realised my name on the board that used to be yellow was now on green.
The next morning, a Monday, I was doing my usual wandering around the ward and as I was coming back I saw four older men gathered near the window. As I approached they turned and looked at me, stopping talking as soon as they saw me. I smiled and went into my room thinking it was weird. I thought they're too old to be dealing drugs, they were less One Direction more Rat Pack. I hope they form a wee barbershop quartet and sang for people in the ward. I have no idea why but it made me feel better thinking of four older guys with dead Scottish accents just singing old songs I'd never heard of before and maybe a few I had, making people talk about music together instead of why they were in there, like it was a prison and they were on remand. Your mind can go to weird places when you're bored.
Later I was given an echo and told that I could go as long as I had someone coming to pick me up since they didn't want us to attempt to get the train. I was anxious to get home because I knew I'd never sleep in the hotel room with my mum and the admissions needed the bed. That day they had seven free beds and thirteen admissions.
I was discharged six days after my surgery.
While waiting on Janice to pick us up Nikki found us in the hotel lobby sitting having a drink and a rest and I convinced her to take a photo, saying it was a victory shot and how could she argue?
We got home eventually however the ride was dangerous because I had a jumper pressed between the seat belt and my rib-cage and at once point Janice made to turn up a cobbled street out of habit and I freaked out. Eventually, I got home and couldn't wait for a peaceful sleep, no drains, no six in the morning wake up calls. However, I did wake up in the night needing drugs, fortunately they were the right stuff compared to last time so I took them and went back to sleep once they'd kicked in.
The next day I went into work in the front street to see the people I work with on a Tuesday afternoon. It was totally worth it to see the look on my manager's face as he just saw a flash of green hair go by. And when Ellis, wondering what he was looking at, turned she looked like she'd seen one too.
My manager said, "How are you here, should you be out of it on drugs?"
I said, "I've had paracetamol."
And he said, "Oh, what I take when I've just- I don't know- stubbed my toe, alright, okay!" And turned away as if I'd just confirmed he'd never understand anything ever again.
The next few weeks consisted of my mum helping me with meals, bathing and getting around. She had to go to the shops for me and pretty much do everything I would normally do for myself without a second thought. I was sleeping with a lot of pillows behind me so that I was sitting up to try and combat the nerve pain which lasted a good few weeks but I gradually lowered myself to lying down, I had to keep it so that it didn't hurt to breath, that it wasn't too hard to get up in the morning and not hurt my neck in the process. When you wake up in the morning and decide to get up, if you're on your back you might just sit up as you are. That's what I do. The sheer pressure that puts on your sternum is something you'll never know until you can no longer do that. To get up I had to turn on my side and push up using my hands but I found I struggled to do that too. So I sort of rolled towards the end of the bed until my legs came off of the edge and let my arms take the weight, you have to let your torso pretty much become dead weight, as much as possible. Like lifting with your legs and not your back, it's hard to do.
One morning I'd woken up and I'd rolled off of the pillows in the night and I had to get my mum to come through and help me get up. I was like an upturned turtle.
It's really not a process that ends at the hospital door.
It also wasn't helped by the change over from DLA to PIP happening while I was there. I got a letter telling me about it in September but they called Elaine while I was there for my surgery and asked her if I could go to the toilet by myself and feed myself. They told Elaine that they would wait a little while before they scheduled my appointment and would come to us instead of expecting me to come to them. When I got home I had a letter saying they were coming the next week. And when they turned up the woman had "no idea" that I'd just been in the hospital or "we would have rescheduled". To which my mum promptly corrected her. I won't go on about it but PIP is a joke, take my word for it. It's a joke that will cost people their lives. They should have kept the old DLA and just applied regular check ups because the PIP guidelines are nonsensical.
I was supposed to be off of work for three to four months at least however I was bored so I went back a month after, with permission from my doctor, and with two weeks probation that said that I wasn't allowed to move from the till at all, and which my co-workers made me adhere to. I volunteer at a charity bookshop so if I'm not lifting a kettle I can assure you I had no intention of trying to lift boxes of books. Especially since, every time I moved I could feel my sternum grating.
It eventually went away but something that I thought I was stuck with was my blood pressure. Do you ever lie on your side at night and can hear your blood pumping in your ear? Well, after the surgery I could hear that all the time. In my ear like a clock ticking. And I hate ticking clocks. I thought I was going to go mad but I eventually stopped hearing it. On top of that, I became aware that I could breathe, really breathe for the first time ever! I've had to try and teach myself to breathe again, and I still need to work on it because I still breathe short and fast but I have been doing it for twenty-odd years so give me a minute.
Before I went in for surgery I was sleeping most of the day away and when I wasn't I was lying on my bed and just staring, too exhausted to do anything else. It was a huge decline from having insomnia for years, not being able to (and sometimes not wanting to) sleep for days to barely being able to do anything else. My depression really swelled during those times, I wasn't sure I was going to get through that, never mind the surgery. However, when I came home I was sleeping a lot because my body needed to recuperate and I was fine with that. Yet, after a few weeks I was aware that I was actually able to stay up for some hours without it being a task, I was slowly becoming a functioning person again.
In December I went back for a check-up and left again after being told I was doing great!
We don't really make a big deal out of Christmas now and this year was no exception, but sitting down to a meal with my mum was perfect. With New Year brought the Dutch. Carmen came to visit me in my natural habitat and we chilled for a few weeks. After that it was Nicole's thirtieth birthday party, in February, whenever I spoke to anyone they said, "How are you, you're looking great!" and I totally blanked for a minute, even asking my mum what was going on, it was then she reminded me that no one had seen me since before the hospital.
A few weeks ago I went back for my six months check-up and after an echo and ECG I was told by Nikki's registrar that before they put the valve in the area was narrow and the heart was struggling to work, right after putting it in the area was less narrow and working a little less, not it's widened considerably and working within parameters considered more than acceptable for someone in my situation. He seemed over the moon and I didn't know what to say other than, "That's good." They (he and my mum) spluttered that it was more than good it was fantastic!
Like, I know.
Over the years my check-ups have gone from a year apart to six months to just a few months. Now they're back to a year apart. If I was ever out of the proverbial woods, it's now. Or as I say; I've gone from death's door to his gate to the end of his street, waiting for a bus outta here.
People have previously said to me that I'm so strong for getting through it and I've said, "I didn't do anything, it was the doctors." And I mean it because I've been fortunate enough that it's when I leave the hospital that my part starts. For most of the first few weeks I just have to do what I'm supposed to - sleep, drugs - and not do what I'm not supposed to - lift things, do too much.
I don't even remember when my shoulder pain stopped but, bar the couple of times I had to take a step back because I'd done too much too quickly, the physical part is easy. It's the rest that's the problem, like I explained to Elaine at my check-up; I'm going to have to completely readjust my expectations of myself. I'll have to find my balance again and teach myself so much that I never needed or found I could no longer use before.
For a year or so I'd been having some bad digestion problems as well as rashes and I finally went to the doctor about it, having managed to figure out myself that I was having some reaction to gluten. I don't do anything drastic, such as completely cutting something out of my diet (which by the way can be highly dangerous if not done properly and don't let anyone tell you different) and yet the locum I saw spoke to me like I was an idiot and had a go at me, telling me things that were untrue (wheat and gluten are not the same thing by the way, they're closely connected but not the same thing). He said, very condescendingly that he was going to send a report to the gastro place but I wasn't to expect them to follow it up because it was obvious what was wrong.
A few weeks later I got a follow up and I've met with the gastro guy who basically agreed with me and took me seriously enough to do tests. I most probably have a wheat allergy. And you're wondering why I'm telling you this. He said I most likely had a susceptibility to it, lying dormant in my body, and then my immune system was weakened with the recent cardiac trouble and that triggered it. I now have a life long dietary requirement because of my heart condition and the intervention it needed. No one knows these things can happen because your body is so vulnerable in many ways after surgery, even in seemingly unconnected ways.
I had physio exercises but as I did more at work and in every day life I genuinely didn't feel like I needed them, I never felt like I was wasting my life away or getting frustrated at my limits because they aren't as low as they were in October.
I feel like a person again.
Maybe even for the first time in over ten years, since I first started to feel ill.
Christmas, Carmen visiting, my sister's thirtieth birthday, my mum's fifth-second birthday, a trip to the Netherlands where I am right now, having spent seven hours writing this post.
When I was a baby they told my mum that there was nothing they could do for her recently diagnosed three month old baby, when I was four years old one of the medical staff told my mum I might not see thirteen because the technology just wasn't there.
This week I'm going to a convention in Germany to meet people and actors from a TV show I like and then, when I go home, we're planning our trip to Venice.
The one I wasn't expected to live to see.
If ever you needed a representation of why we fund-raised for the British Heart Foundation here it is:
Aaw Taylor, you told your story beautifully. What a journey you've had and how amazingly well you travelled it. Now, at last, you can properly look forward to your dream trip and have the energy to really enjoy it. You might have to pinch yourself a few times to make sure you're not just dreaming. So happy for you. Enjoy the trip you are on just now and celebrate your new beginning. Love, Janet x
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