Pilot Episode
Sorry it's taken so long to put this up but, as usual, nothing concerning the hospital and me is ever simple. So, true to form, this post will be long and complicated and I apologise in advance but this past few weeks have been just that. So again... Bear with me.
Also, I should warn you that there are pictures in this post and while none are gory or anything a few of you might be shocked or a little taken back (you probably won't be but I'm told that it could be a shock for people who are not as used to this life as I am) so be aware of that before you continue and remember that I am completely fine now. Thanks. <3
Also, I should warn you that there are pictures in this post and while none are gory or anything a few of you might be shocked or a little taken back (you probably won't be but I'm told that it could be a shock for people who are not as used to this life as I am) so be aware of that before you continue and remember that I am completely fine now. Thanks. <3
Sunday night I had a problem with my computer so I spent all night trying to fix it in time for setting off with it on Monday morning. It took so long that I only finished it (successfully by the way, I am a tech genius) twenty minutes before I had to jump in the shower so by the time we were rushing into the hotel grounds I was pretty much ready to drop. My mum checked in the hotel and put everything in the room while I found the right place, usually we went into Outpatients department but I was to go to the third floor to Ward 3 East. I found the desk and handed my registration form in at five minutes to one (1PM being my appointment time) and then settled in the waiting room. Mum eventually joined me and we got comfy for what turned out to be a long wait.
In the waiting room there were four other people/groups to begin with. There was one man sitting by himself, he looked quite sad and a little worse for wear but not dramatically so. There was a family of four consisting of a man and his wife and either his two daughters or his daughter and her girlfriend - it was quite hard to tell. The two women seemed quite unconcerned about their father's (as it turned out to be his appointment) welfare or pending appointment and more about which photos they could take of each other or who was phoning them but that's just what we saw. There were two men, around the same age sitting talking like men at the end of a bar watching the football as these two idly watched loose women - it turned out to be one of the men's appointment and the other appeared to be a close friend rather than a relative (the man said to a nurse "No, I'm just here waiting with my pal while he goes in" or something along those lines). There was also a younger guy, maybe a bit older than me and a man older than him that appeared to be his father. As the hours went on, the family was taken, the man sitting with his friend was taken and a couple of women (looked like wife and daughter) collected the man who looked worse for wear. A couple of other patients joined the waiting room but by this point I was intently watching the TV trying to concentrate on not falling asleep, there was also a man who came from the ward with all of his stuff to wait on someone picking him up. He seemed to have been discharged early and unexpectedly - he had to phone to be picked up and the pharmacist was giving him his medication in the waiting room while someone else came to take out the line in his hand. It all seemed a bit of a shame on the man that this was all happening in the corridor rather than his room but we soon realised why.
3PM approached and we moved to the chairs that lined the hallway beside the waiting room as a meeting started. Every Monday and Thursday at 3PM a discharge meeting is held in the waiting room of Ward 3, all the patients who are able to can go to this meeting and learn about what to expect when they go home in terms of: medication, conditions of release, their limits, working, driving, smoking, drinking, child care etc.
EG - If you smoke, all the work that is achieved by whatever surgery they do is reversed in two years.
You cannot even lift a full kettle or you risk your sternum grinding out of place.
You have to wear special socks (the same ones you get for flying) for at least 6 weeks after the surgery to prevent blood clots (I'm wearing them right now).
At this point Elaine walked along the corridor coming to see me in my room except that I wasn't in my room yet. After talking for a little while Elaine went away to find out what was going out and we were ushered into a little side room. The nurse said, "Taylor, I'm not going to beat around the bush... You're not getting your surgery tomorrow." Basically the story was that there was another patient who had been in the hospital unwell for some time, too sick to have his surgery, they had been slowly building him up to the right strength and he was finally there. He was finally strong enough to withstand the surgery so he would be taking my spot on the Tuesday morning and I had been moved to the Friday morning. My mum was disappointed but how can you be mad at that? Saving a man's life? He was healthy enough now but that wouldn't last - this was his one chance. Not mad at all. I wasn't surprised anyway because I had said to Mum and to my cousin, Josslyn, that I knew it would be cancelled. It had been cancelled before that, I was originally scheduled to be in at some point in March but unforeseen circumstances had meant they had to reschedule to April and I just knew it would happen again but this time it would be once we were already there. Everyone said I was being pessimistic because it had already been cancelled but I just had a feeling.
Anyway, we had a choice of staying in the hotel until Thursday, when I would be admitted to the ward, or going home and coming back. We decided to stay and just stick it out until then so on the Monday we went for food (I hadn't eaten that morning - I never do, hate breakfast) then went to the room and I conked out for a much need snooze.
I slept almost right through to breakfast the next morning. Tuesday was spent as if we were on the comedown from a high, we just lolled around the room in between meals. Even when we came back and I was preparing to write this I said "We must have done something on Tuesday?!" But, no. All we did was lie about, half-watching TV until meal times. I didn't get much sleep that night since I'm not used to sharing a room so I pretty much watched Netflix all night. The next day we took a slow walk down to the Clyde Shopping Centre and had a look around. We had a little McDonalds and nipped into Asda before jumping in a taxi back to the hotel. That night we decided to have dinner in the hotel since I would be admitted on Thursday and I was surprised to find that we both preferred the canteen food. We had a little drink in the bar before going back to the room and getting settled for the night.
It's funny, I can't remember exactly when but Mum and I made two agreements over the days we were waiting. I was unsure that this would still go ahead so I said to her, if it goes ahead I'll buy a takeaway the night we get home and if it doesn't then you have to. The second was made after I kept saying "It'll either be cancelled or it won't work. If it doesn't get cancelled then it won't work." Mum made me promise to stop saying negative things like that out loud and she wouldn't get on at me for every little thing I did after the procedure.
On Thursday we got ready and headed up to the ward, as usual we got there early and were shown to my room for the night. We had been told the drill during the pre-assessment a while ago - the night before I would stay in a room on the ward, the next morning I'd be taken away for the op and when I woke I'd wake in the Intensive Care Unit (ICU). I was not to panic at waking up in ICU because that was procedure after operations like this one, it didn't mean I was in trouble or anything. After ICU had cleared me I would be moved to the High Dependency Unit (HDU) and when they were satisfied I'd be moved back up the ward, although probably a different room. I sat there for a while still unsure of what was going on, my mum was telling me to get into my jammies now but I was thinking 'No, I've been shown in here and left... Something's up.' But when one of the nurses, Stephen, came in and told me to get comfy because I might be waiting a while it dawned on me that I hadn't be left while they drew straws outside as to who was going to tell me that I had to go home. So I got my Supermans on and watched TV. I was visited that day by a lot of different people, so much so I don't remember what order they came in so I'll just rattle off names and a list of what for. There was the ward nurse of that day, Dr Bhawal - who was the ward doctor, he spoke to me about any concerns I had and who I should address them to, Elaine - who is the SACCS nurse I always talk about, she holds everything together and was checking in on me, the pharmacist came to ask if I had any regular medication etc, Dr Reive - he was the anaesthetist, he came to explain his role in everything and to ask for my consent to use 'Tranexamic acid' to reduce bleeding during surgery, then Mr MacArthur - who is the surgeon - appeared to explain his side of things and ask if there was any questions. In this little chat, during which my mum was present, we discovered that one of the surgeons who worked on one of the surgeries when I was a baby trained with Mr MacArthur in Melbourne.
That night my sister Nicole and her boyfriend Stewart came up to see me and we sat for a little while before they went to McDonalds and brought me back a meal, the nurses said I was allowed to eat whatever I wanted up until midnight so I was making the most of it. While we were there my uncle Colin, cousin Josslyn and Dean came up to see me. At this point, if everything had gone down how it was supposed to, I would have probably been in HDU or back in the ward by the this point. My auntie Jackie was meant to be coming too but she had caught something and thought it was a better idea that she didn't come just in case she passed it on.
After visiting time they all left me to my own devices. This included a shower I did not want to have (for no reason other than my skin doesn't like being showered everyday, it becomes all red and irritated) with a red gel that turned my skin a little pink. The nurse said everyone who is going in for surgery has to have a shower with that gel either the night before or the morning so I thought I'd get it over and done with before I settled down in front of the film "Knowing" for the night. I was given tablets to help me sleep at eleven and, as usual, they did not touch me. I lay in the dark for a while and I think I conked out around one or two in the morning.
At about half past six I was woken up by one of the nurse (Who is up at this time, seriously? I'm a writer, 6AM is my bedtime.) who told me that I would be getting my pre-med soon so I phoned the hotel room that my mum, Nicole and Stewart were overnighting in to tell them. They turned up at twenty to eight (not exactly the rush I expected when I phoned) and I was supposed to be out of it by then but, as usual, things like that never affect me like they are supposed to but my mum did note that by the time the theatre people came to collect me I had begun to slur. Attractive. I vaguely remember taking to a woman with red hair, who was one of the theatre staff (a woman and a man) as they prepared me to be taken away.
As I was being wheeled away the woman was talking to me and somehow we managed to get onto malteasers and she said "Oh, I'll bring you some!" We laughed and I must have conked out pretty soon after that.
My sister and Stewart decided that the three of them should go to Loch Lomond, which was twenty minutes away in the car, to take their minds off everything while I was under. I was taken away at about 8.15 am and we were told, "It should take up to about 2PM but if it goes over that don't panic, it doesn't mean anything, sometimes these procedures just take longer, we will phone you as soon as she's out. But not before 2." But, at 1PM, as the three of them had just ordered food in a restaurant my mum noticed she had a voicemail. From Elaine.
Chaos ensued in the restaurant which resulted in my mum going outside to phone Elaine. When my mum managed to get ahold of her Elaine said "First of all, nothing is wrong. Taylor is absolutely fine. But Nikki (Dr Walker) and Mr MacArthur have decided to stop the surgery because it's not safe to go on and we need you to come back." So, after being shouted at, Stewart drove back to hospital with my mum and sister in tow until they reached the hospital and met Elaine in the corridor. She took them all into a quiet room, it was my mum, Nicole, Stewart, Elaine, Mr MacArthur, Claire (the Intensive Care Nurse) all talking about why they had stopped the surgery.
*Takes deep breath in preparation of explaining it.*
They said that the reconstructed part, that had been done when I was a baby, had fused together and was so over calcified that when when Mr MacArthur had tapped it, it had made a noise like porcelain which meant that they could not attach the valve to anything. The area they were trying operate on is shaped like a 'T' and they were concentrated on all of the vertical part. And you have to remember that all of the tests they do do not give them a 100% view of inside of your heart so when they opened me up they had no idea there was so much calcification. Now that the plan had changed they decided to wake me up and talk to me about Plan B. At this point Mum, Nicole and Stewart went to ICU where yours truly was completely out of it, the staff said I was fine and everything looked great but my family would have disagreed. I was still out of it and, apparently, yellow but that's not what they noticed. I was hooked up to a breathing machine with the breathing tube down my throat- the works. But what was strange was that, the tube wasn't at the side of my mouth like everyone else's, mines was in the middle but... right in the middle. My mouth was fully open with the tube sat right in the middle.
They asked why my mouth was open like that and the staff said that everyone looked different. They visited a few times after that until Claire phoned the hotel room to say that they had took my breathing tube out and I was stable. Of course, it was said later that it was in fact me that woke up and pulled it all out but no one was surprised because they had been warned that when I was four, one minute I was out of it after heart surgery and the next I was stood right up on the bed and pulled the tube right out. Yeah, I really don't like it.
When they visited again, this time I was without the breathing tube, my mouth was still hanging wide open - my mum and a few nurses said to me later that I actually looked *they whispered this bit* dead. Great look. My family went away again and when they came back Claire said that while I was being sick my jaw had closed and I had mumbled to her that my jaw was sore. The nurse, Claire, said to me at some point something about theatre staff but all I could think was "my jaw is sore". Baring in mind it was gone eleven at night on a Friday they got an orthopaedic surgeon from the nearby Southern General (instead of their own because of the time) and the IC doctor to come and have a look at me. I don't remember this meeting but they concluded that my jaw was dislocated, knocked me back out and reset it. When Mum, Nicole and Stewart came back to see me I was in and out of consciousness but I had two or three rolled up towels stacked up on my chest in case I yawned (or anything else that could knock my jaw back out) and I remember little bits of conversation.
Janice came up that day too but I don't remember her being there since I was sedated for a lot of it. At some point someone gave me a rolled up towel to hold against my breastbone. I don't remember exactly when or who but they told me that if I coughed or just moved that pressing it a little against the breast bone would take away the pressure that movement would cause. It became my best friend for nearly the rest of my time there. I remember just a little of ICU and towards the end it became clearer - they tried to get me to eat some toast and a banana, I had a couple of bites of toast just to get them to leave me because I didn't want anything at all. They kept the banana and it even followed me to the next place.
Now, because ICU closes at the weekend I was moved up to HDU on the Saturday, I was still a little out of it, I basically woke up to be sick and talk to who ever was there and then fall asleep again.
I don't remember a lot of the first few hours in HDU, I still had the line in my neck so they were able to give me painkilliers without me even feeling it and without the pain kicking in first. The day nurse who dealt with me was called Pamela and she was nice. At some point they had to move me to a chair which was awful but once I was there I didn't want to go back to bed, just the movement was the bad bit. When I did go back to bed if I wanted to move it took two nurses to move me and I hated it. I had to roll to one side and hold onto one nurse while the other put a sheet under me, then I would turn all the way to the other nurse and hold onto her while the first nurse pulled the sheet under me, I rolled onto my back and they would move me with the sheet. It was so painful to move around that much and I would put it off as much as possible. They even started to help me just shimmy - one nurse would hold onto my arms as I sat up a bit and slowly moved my bum back on the bed, I tried to get them to do that every time instead but I remember once when I was saying my mum "Tell them, not a full move, just a shimmy." And I got a full move anyway because I couldn't shimmy myself. All day and night I could hear the man in the next room coughing, it sounded so sore but I was so in and out of it to really notice.
On Sunday I woke up and was told I might be going to the ward that day they had me sitting in the chair and I looked over at my folder, sitting there was the infamous forgotten banana which was turning to the darkside. But beside that was a red bag and something from ICU came back to me. Remember when Claire was talking to me and all I could think about was my jaw? Well, what she said was that a member of the theatre team had dropped off a bag of malteasers for me. Pamela showed me them and they had a sticker on them saying that they were for me from the theatre team. I also remembered at some point in ICU, I don't remember exactly when, a woman in scrubs came and spoke to me. She said that she had been having a rubbish day when I spoke to her and that I was laughing and joking with her as I was about to have this big operation that I made her day and that's what the malteasers were for. Then again, I may have been hallucinating. But the malteasers were real so who knows.
I was told if I tried to eat something for lunch that they would be happy for me to go to the ward. What they didn't tell me was that I would need physio before I went. Are you ready for the pink bum story? *Sighs* After lunch a young guy came in, about my age give or take, and said his name was Ross and he was the physiotherapist. Well, actually what he said first was "This is my Friday." (his working week meant that... Ah, you get the idea). So I assume from that and his surprise that he had to introduce himself that I had met him at some point in the past few days but I was out of it, he was probably the one who gave me my best friend - the rolled up towel. Anyway he spoke to me for a little while and then asked if I would be okay to walk around the ward a couple of times with him. I panicked. What you have to understand is that I was sitting in a hospital gown, special socks to stop blood clots that appeared on my legs at some point and... Nothing else. My gown wasn't even tied at the back. Oh, I'm not finished. Do you remember the red gel I had to shower in on Thursday night that turned me a slight pink? Well, I had came out of the operation to most of my body below the neck a neon pink. They had to use it before the operation while I was out of it. So not only was my bare bum showing at the back... It was neon pink. I'm not exaggerating. Istuttered embarrassed said to him, "Em, my gown is open at the back." thinking that he would go get Pamela. Oh no. He said. "Oh well just stand up and I'll tie it for you." What was I supposed to say? "I'd rather not show you my bum when it is it's usual colour never mind when it's glowing."? So I just muttered an okay and stood up while my face turned the same colour as my bum. We walked around the ward a few times and then I went back to my chair of shame. He talked me through a couple of breathing exercises and took mercy and left. As soon as Pamela came she said "How was physio?" I could have threw my face into the table, especially when she started cackling after I told her. Even paper knickers would have been better.
I managed to eat a little for lunch and that evil banana was disposed of. I also managed to convince Pamela to let me take the oxygen off. I had one of those tubes that go across your face under your nose and hook on your ears but it was making the inside of my nose very dry. Those of you who know me will know about my struggle with acne and the problems I had with the Roaccutane I had to take for it. It left me with a very dry nose that bleeds a lot as a result. So with the oxygen adding to it my nose was bleeding and the dryness was actually making it harder to breathe, I got that off and, as Pamela said I would, I started coughing because I was sitting up properly. She gave me a nebulisser - it was something I had to breathe in through my mouth and was like steam, just to ease the coughing and make it less dry but I still hugged into my towel friend for support as I coughed. Before I got that off I managed to convince Pamela to stop for a few seconds.
I was eventually moved up to the ward after lunch and I was settled into room 308 back on Ward 3 East, I must have been fed up with it all because I asked my mum "Is this where I'm going to be now, they're not going to move me again?" and that's when the usual suspects came to say hello, like the ward nurse, doctor etc. I got various tests when another young guy wandered in and said he was physio, he went through the breathing exercises with me and we went a little walk. I was tied up at the back this time. The rest of that day was basically getting settled in but the ward was very noisy. I felt like I would never sleep.
The next few days were trying with little sleep, being woken up at 6AM with breakfast was not my idea of fun especially when they wouldn't leave until I was properly awake which I didn't know would happen. I honestly bit my tongue a few times, reminding myself to be nice no matter how sleep deprived I was or how much I didn't want to eat. On the Monday I waited to see the doctors, had a shower and did whatever I could to try and feel like myself again - including straightening my hair. I had dinner and then Nikki and Elaine came up to discuss the next step. I'll try to explain it briefly. Basically when they were going in they were going to replace the vertical part of the T shaped pulmonary artery which carried a 2-3% risk of death, when they went in they realised they couldn't do that due to the calcium. Remember the whole T which had to be reconstructed when I was first diagnosed so the next thing they would have had to do was replace the whole bit again, which carries a 20-30% risk of death - a risk Nikki was uncomfortable going ahead with without speaking to me about first. When Nikki explained this my immediate thought was "Okay, let's do this then." but before I could verbalise this Nikki explained that her and the team had sat down on Saturday and had devised a new plan. Instead of replacing the whole T or all of the vertical bit they would replace the bottom part which housed the affected valve. When Dr MacArthur had reconstructed the artery part Nikki would then put in multiple stents to stabilise it and place a new valve in the last stent. This, they said, should give us a few years to either let science catch up to what they needed to fix things the way they want to or to come up with another plan.
This is the option Nikki, Elaine, Dr MacArthur and the rest of the team are happy with and I trust them completely but... In all honesty, I am still frustrated because this is all going to be dragged out over the next god knows how many years. I am not going to get that "probably ten years or there abouts" break between surgeries. I am not going to get the chance to start my life in terms of independence and working. I am not going to be strong enough to get a job so that I can start to publish writing (writing I am constantly changing my mind about). I kind of wish they would just replace the whole T, 20-30% isn't as bad as it could be but I know it's still a lot. I'm just stuck, again, waiting. But that seems to be how my whole life is going to go. Everyone says "It's not going to be like that" or "It's just how it is just now, it won't be forever" but it might as well be. I don't want to seem ungrateful because I'm not, I'm just fed up. And I think, after 8 years, I am entitled to be a bit disheartened. Nikki had to go after that but Elaine stuck around for a little chat. Dr MacArthur was supposed to be coming to see me at some point but when he got to my room, my door was closed and thinking I was asleep he left me be. At first, when I found out I thought "of all the people that have woken me up in the time I've been here you're the only one I do want to see!" And then my mum pointed out that he was the only one who left me to sleep, knowing how important it was to recovery.
Well regardless of how I feel or what the future holds I still had this surgery to recover from. On the Tuesday I had a man called Thomas come and do a quick ECG, at one point he dropped one of the sticky pads and I leant over to pick it up without thinking. I got "Atch-chachacha!" from him in response. When I asked what he said "You've just had heart surgery, you shouldn't be bending over like that!" I just laughed. I completely forget there was things I shouldn't be doing. We spoke briefly and he asked what I do I told him I was a writer. He said "Like Sci-fi?" all happy. I assured him I wasn't that smart and we spoke a little about Stan Lee and he left after making me promise to let him know if my work ends up on jammie trousers. I guess you had to be there. I got a wee picture with Diana who was the nurse on the ward and I called her my drug dealer because she always brought me little cups of tablets, she laughed at that. I wasn't laughing when she brought me a cup of K+ (potassium) to up my levels which always fall after surgery. It was the foulest thing ever. I don't remember exactly when she brought me this poison so I'm going to put it here.
Elaine came up about six in the afternoon, head to toe in scrubs because Tuesday was her day in the Cath Lab, she was just popping in before heading home. She put her bags down, my mum wandered in at one point and when she finally pulled herself away from us it was half past seven. But not before another photo.
As she was leaving Dr Reive approached cautiously, he started off with "Why are you all standing in the corridor?" and a smile. He had come up to ask about my jaw and when he realised it was most likely while he was intubating me that it happened he looked like he was ready to run away or be sick. He apologised and after a quick chat he departed and Diana came to take my dressing off. She started with the bioinclusive bandage that was clinging for dear life onto my neck and then moved to the dressing on my main scar and little drains. The main dressing is a special kind - it's completely waterproof so I was able to shower before this with it on but it did had a red blotch on it from leaking. I just felt dirty with it on and a little claustrophobic, I wanted my skin to breathe and be rinsed so at first I thought "Aw good!" but as she was taking it off I thought "Oh, I don't like it. Put it back on." When she had taken it off I was to go in a shower and just let the water roll over it, don't scrub it - as if I would, I barely even touched it. It felt so strange being unprotected and just letting water run down it but that night was the strangest feeling. I didn't feel right pressing a towel against it so I was more unsure of getting in and out of bed/chairs than I had been. I had been getting slightly comfier in my bed at night, my towel with me, as the days went on and I learned what my body needed but when the dressing came off everything took a few steps back and I had to learn it all over again.
On Wednesday Sandra and Nikki popped back in to see how I was doing and talk about the option they had come up with again to see how it sat with me now I had time to think about it and if I was okay. I told her what I will always tell her, "I'm always okay". Another photo of the team, we will corner Dr MacArthur one day.
Jackie, a staff nurse on the ward who's student had accompanied me to my ECHO and watched, came and had a word with me about what I should and shouldn't do - I wasn't allowed a bath because that involved using your arms to haul yourself out, I wasn't allowed to lift a full kettle, things like that. She said that it sounded like she was saying the obvious, which it didn't to me, but the amount of times they had phone calls from people who had done things they shouldn't and were either stuck or had really hurt themselves - they had even had one patient who had been discharged and they've played rugby. We couldn't believe it, I couldn't even stand up normally and he/she had thought it was okay to play rugby. I don't know what pain killers they were on but I wouldn't mind a shot of them. I was discharged late that day, a nurse said that a district nurse would come to my house and remove my stitches but as we were leaving Jackie called us back and said "Have you had your stitches out?" so we told her about what the other nurse had said and she waved us back in. She took them out and then we were free to go.
We didn't tell anyone (announce it on facebook) because when we got back to the hotel I was exhausted and in pain.
I tried to get some sleep but it wasn't looking hopeful, so we got our dinners in our room and settled in to watch TV. When I tried to sleep that night it was agony, I was up all night in pain and could hardly move. I couldn't understand it because they had asked me before they discharged me "Can you handle the pain?" And I said "Yes." because I really could, I felt it when I moved around but, even at night, it was manageable. This was anything but. Mum even said that in the short times I did manage to sleep I was mumbling and moaning with pain, so much so that I kept her up most of the night too. So in the morning we went back to the ward and told them about it - I would take my pain killers and two hours later I was in agony again, I mumbled and moaned through that waiting until I could take them again. They gave me new painkillers to take every two hours instead of four and we waited on Stewart who had offered to drive all the way through there after his work to pick us up and take us back. While waiting I may have found some jelly... Not going to lie, I totally found jelly. And I lost the ability to talk properly which I blame on the medicine.
Just as an added bit, I wanted to show you just how far surgery has come over the years. I was only a baby-four years old when I had my first surgeries so I don't remember what it looked like before that or even after it. Although, in some old pictures my scar looks quite red and raw even years after it and I wasn't sure what to expect after this one. But this is a photo, not trying to flash you all, for comparison - my nearly twenty year old scar is on the left, taken the night before travelling to Dalmuir and on the right is my scar a couple of weeks ago. It is actually less red now than the right hand side photo and has settled down. But the spotlight is usually on the surgery itself and not on the progress the cosmetic side has made and how the surgeons go out of their way to try and make life after surgery better.
It's been four weeks since the surgery and three weeks since I've been discharged. I have a sore shoulder which doesn't respond to any painkillers so I've had an X-ray (orthopaedic surgery was probably bouncing on it trying to reset my jaw) although Elaine says that it is a common complaint among post-surgery patients just because of the way your body lies during and after it so it may well be nothing more than that, I don't take the painkillers any more because I didn't like the feeling of being on them. I would have to take them sitting in my bed because I would fall asleep after them which was fine before but now I'm okay without them. Saying that. my body is still putting itself back together so I'm glad to have that pain in my shoulder because it reminds me to watch what I'm doing. This is honestly the hardest thing, physically, that I've ever had to do and this was only the pilot episode. I still have to do this at least once more in the recent future and once my body has had a little break (lets not forget I have tickets to see Lee Evans later on this year which I am not missing for anything) then I'm ready for the next episode.
I slept almost right through to breakfast the next morning. Tuesday was spent as if we were on the comedown from a high, we just lolled around the room in between meals. Even when we came back and I was preparing to write this I said "We must have done something on Tuesday?!" But, no. All we did was lie about, half-watching TV until meal times. I didn't get much sleep that night since I'm not used to sharing a room so I pretty much watched Netflix all night. The next day we took a slow walk down to the Clyde Shopping Centre and had a look around. We had a little McDonalds and nipped into Asda before jumping in a taxi back to the hotel. That night we decided to have dinner in the hotel since I would be admitted on Thursday and I was surprised to find that we both preferred the canteen food. We had a little drink in the bar before going back to the room and getting settled for the night.
It's funny, I can't remember exactly when but Mum and I made two agreements over the days we were waiting. I was unsure that this would still go ahead so I said to her, if it goes ahead I'll buy a takeaway the night we get home and if it doesn't then you have to. The second was made after I kept saying "It'll either be cancelled or it won't work. If it doesn't get cancelled then it won't work." Mum made me promise to stop saying negative things like that out loud and she wouldn't get on at me for every little thing I did after the procedure.
On Thursday we got ready and headed up to the ward, as usual we got there early and were shown to my room for the night. We had been told the drill during the pre-assessment a while ago - the night before I would stay in a room on the ward, the next morning I'd be taken away for the op and when I woke I'd wake in the Intensive Care Unit (ICU). I was not to panic at waking up in ICU because that was procedure after operations like this one, it didn't mean I was in trouble or anything. After ICU had cleared me I would be moved to the High Dependency Unit (HDU) and when they were satisfied I'd be moved back up the ward, although probably a different room. I sat there for a while still unsure of what was going on, my mum was telling me to get into my jammies now but I was thinking 'No, I've been shown in here and left... Something's up.' But when one of the nurses, Stephen, came in and told me to get comfy because I might be waiting a while it dawned on me that I hadn't be left while they drew straws outside as to who was going to tell me that I had to go home. So I got my Supermans on and watched TV. I was visited that day by a lot of different people, so much so I don't remember what order they came in so I'll just rattle off names and a list of what for. There was the ward nurse of that day, Dr Bhawal - who was the ward doctor, he spoke to me about any concerns I had and who I should address them to, Elaine - who is the SACCS nurse I always talk about, she holds everything together and was checking in on me, the pharmacist came to ask if I had any regular medication etc, Dr Reive - he was the anaesthetist, he came to explain his role in everything and to ask for my consent to use 'Tranexamic acid' to reduce bleeding during surgery, then Mr MacArthur - who is the surgeon - appeared to explain his side of things and ask if there was any questions. In this little chat, during which my mum was present, we discovered that one of the surgeons who worked on one of the surgeries when I was a baby trained with Mr MacArthur in Melbourne.
That night my sister Nicole and her boyfriend Stewart came up to see me and we sat for a little while before they went to McDonalds and brought me back a meal, the nurses said I was allowed to eat whatever I wanted up until midnight so I was making the most of it. While we were there my uncle Colin, cousin Josslyn and Dean came up to see me. At this point, if everything had gone down how it was supposed to, I would have probably been in HDU or back in the ward by the this point. My auntie Jackie was meant to be coming too but she had caught something and thought it was a better idea that she didn't come just in case she passed it on.
At about half past six I was woken up by one of the nurse (Who is up at this time, seriously? I'm a writer, 6AM is my bedtime.) who told me that I would be getting my pre-med soon so I phoned the hotel room that my mum, Nicole and Stewart were overnighting in to tell them. They turned up at twenty to eight (not exactly the rush I expected when I phoned) and I was supposed to be out of it by then but, as usual, things like that never affect me like they are supposed to but my mum did note that by the time the theatre people came to collect me I had begun to slur. Attractive. I vaguely remember taking to a woman with red hair, who was one of the theatre staff (a woman and a man) as they prepared me to be taken away.
As I was being wheeled away the woman was talking to me and somehow we managed to get onto malteasers and she said "Oh, I'll bring you some!" We laughed and I must have conked out pretty soon after that.
My sister and Stewart decided that the three of them should go to Loch Lomond, which was twenty minutes away in the car, to take their minds off everything while I was under. I was taken away at about 8.15 am and we were told, "It should take up to about 2PM but if it goes over that don't panic, it doesn't mean anything, sometimes these procedures just take longer, we will phone you as soon as she's out. But not before 2." But, at 1PM, as the three of them had just ordered food in a restaurant my mum noticed she had a voicemail. From Elaine.
Chaos ensued in the restaurant which resulted in my mum going outside to phone Elaine. When my mum managed to get ahold of her Elaine said "First of all, nothing is wrong. Taylor is absolutely fine. But Nikki (Dr Walker) and Mr MacArthur have decided to stop the surgery because it's not safe to go on and we need you to come back." So, after being shouted at, Stewart drove back to hospital with my mum and sister in tow until they reached the hospital and met Elaine in the corridor. She took them all into a quiet room, it was my mum, Nicole, Stewart, Elaine, Mr MacArthur, Claire (the Intensive Care Nurse) all talking about why they had stopped the surgery.
*Takes deep breath in preparation of explaining it.*
They said that the reconstructed part, that had been done when I was a baby, had fused together and was so over calcified that when when Mr MacArthur had tapped it, it had made a noise like porcelain which meant that they could not attach the valve to anything. The area they were trying operate on is shaped like a 'T' and they were concentrated on all of the vertical part. And you have to remember that all of the tests they do do not give them a 100% view of inside of your heart so when they opened me up they had no idea there was so much calcification. Now that the plan had changed they decided to wake me up and talk to me about Plan B. At this point Mum, Nicole and Stewart went to ICU where yours truly was completely out of it, the staff said I was fine and everything looked great but my family would have disagreed. I was still out of it and, apparently, yellow but that's not what they noticed. I was hooked up to a breathing machine with the breathing tube down my throat- the works. But what was strange was that, the tube wasn't at the side of my mouth like everyone else's, mines was in the middle but... right in the middle. My mouth was fully open with the tube sat right in the middle.
When they visited again, this time I was without the breathing tube, my mouth was still hanging wide open - my mum and a few nurses said to me later that I actually looked *they whispered this bit* dead. Great look. My family went away again and when they came back Claire said that while I was being sick my jaw had closed and I had mumbled to her that my jaw was sore. The nurse, Claire, said to me at some point something about theatre staff but all I could think was "my jaw is sore". Baring in mind it was gone eleven at night on a Friday they got an orthopaedic surgeon from the nearby Southern General (instead of their own because of the time) and the IC doctor to come and have a look at me. I don't remember this meeting but they concluded that my jaw was dislocated, knocked me back out and reset it. When Mum, Nicole and Stewart came back to see me I was in and out of consciousness but I had two or three rolled up towels stacked up on my chest in case I yawned (or anything else that could knock my jaw back out) and I remember little bits of conversation.
Janice came up that day too but I don't remember her being there since I was sedated for a lot of it. At some point someone gave me a rolled up towel to hold against my breastbone. I don't remember exactly when or who but they told me that if I coughed or just moved that pressing it a little against the breast bone would take away the pressure that movement would cause. It became my best friend for nearly the rest of my time there. I remember just a little of ICU and towards the end it became clearer - they tried to get me to eat some toast and a banana, I had a couple of bites of toast just to get them to leave me because I didn't want anything at all. They kept the banana and it even followed me to the next place.
I don't remember a lot of the first few hours in HDU, I still had the line in my neck so they were able to give me painkilliers without me even feeling it and without the pain kicking in first. The day nurse who dealt with me was called Pamela and she was nice. At some point they had to move me to a chair which was awful but once I was there I didn't want to go back to bed, just the movement was the bad bit. When I did go back to bed if I wanted to move it took two nurses to move me and I hated it. I had to roll to one side and hold onto one nurse while the other put a sheet under me, then I would turn all the way to the other nurse and hold onto her while the first nurse pulled the sheet under me, I rolled onto my back and they would move me with the sheet. It was so painful to move around that much and I would put it off as much as possible. They even started to help me just shimmy - one nurse would hold onto my arms as I sat up a bit and slowly moved my bum back on the bed, I tried to get them to do that every time instead but I remember once when I was saying my mum "Tell them, not a full move, just a shimmy." And I got a full move anyway because I couldn't shimmy myself. All day and night I could hear the man in the next room coughing, it sounded so sore but I was so in and out of it to really notice.
On Sunday I woke up and was told I might be going to the ward that day they had me sitting in the chair and I looked over at my folder, sitting there was the infamous forgotten banana which was turning to the darkside. But beside that was a red bag and something from ICU came back to me. Remember when Claire was talking to me and all I could think about was my jaw? Well, what she said was that a member of the theatre team had dropped off a bag of malteasers for me. Pamela showed me them and they had a sticker on them saying that they were for me from the theatre team. I also remembered at some point in ICU, I don't remember exactly when, a woman in scrubs came and spoke to me. She said that she had been having a rubbish day when I spoke to her and that I was laughing and joking with her as I was about to have this big operation that I made her day and that's what the malteasers were for. Then again, I may have been hallucinating. But the malteasers were real so who knows.
I was told if I tried to eat something for lunch that they would be happy for me to go to the ward. What they didn't tell me was that I would need physio before I went. Are you ready for the pink bum story? *Sighs* After lunch a young guy came in, about my age give or take, and said his name was Ross and he was the physiotherapist. Well, actually what he said first was "This is my Friday." (his working week meant that... Ah, you get the idea). So I assume from that and his surprise that he had to introduce himself that I had met him at some point in the past few days but I was out of it, he was probably the one who gave me my best friend - the rolled up towel. Anyway he spoke to me for a little while and then asked if I would be okay to walk around the ward a couple of times with him. I panicked. What you have to understand is that I was sitting in a hospital gown, special socks to stop blood clots that appeared on my legs at some point and... Nothing else. My gown wasn't even tied at the back. Oh, I'm not finished. Do you remember the red gel I had to shower in on Thursday night that turned me a slight pink? Well, I had came out of the operation to most of my body below the neck a neon pink. They had to use it before the operation while I was out of it. So not only was my bare bum showing at the back... It was neon pink. I'm not exaggerating. I
I managed to eat a little for lunch and that evil banana was disposed of. I also managed to convince Pamela to let me take the oxygen off. I had one of those tubes that go across your face under your nose and hook on your ears but it was making the inside of my nose very dry. Those of you who know me will know about my struggle with acne and the problems I had with the Roaccutane I had to take for it. It left me with a very dry nose that bleeds a lot as a result. So with the oxygen adding to it my nose was bleeding and the dryness was actually making it harder to breathe, I got that off and, as Pamela said I would, I started coughing because I was sitting up properly. She gave me a nebulisser - it was something I had to breathe in through my mouth and was like steam, just to ease the coughing and make it less dry but I still hugged into my towel friend for support as I coughed. Before I got that off I managed to convince Pamela to stop for a few seconds.
I was eventually moved up to the ward after lunch and I was settled into room 308 back on Ward 3 East, I must have been fed up with it all because I asked my mum "Is this where I'm going to be now, they're not going to move me again?" and that's when the usual suspects came to say hello, like the ward nurse, doctor etc. I got various tests when another young guy wandered in and said he was physio, he went through the breathing exercises with me and we went a little walk. I was tied up at the back this time. The rest of that day was basically getting settled in but the ward was very noisy. I felt like I would never sleep.
The next few days were trying with little sleep, being woken up at 6AM with breakfast was not my idea of fun especially when they wouldn't leave until I was properly awake which I didn't know would happen. I honestly bit my tongue a few times, reminding myself to be nice no matter how sleep deprived I was or how much I didn't want to eat. On the Monday I waited to see the doctors, had a shower and did whatever I could to try and feel like myself again - including straightening my hair. I had dinner and then Nikki and Elaine came up to discuss the next step. I'll try to explain it briefly. Basically when they were going in they were going to replace the vertical part of the T shaped pulmonary artery which carried a 2-3% risk of death, when they went in they realised they couldn't do that due to the calcium. Remember the whole T which had to be reconstructed when I was first diagnosed so the next thing they would have had to do was replace the whole bit again, which carries a 20-30% risk of death - a risk Nikki was uncomfortable going ahead with without speaking to me about first. When Nikki explained this my immediate thought was "Okay, let's do this then." but before I could verbalise this Nikki explained that her and the team had sat down on Saturday and had devised a new plan. Instead of replacing the whole T or all of the vertical bit they would replace the bottom part which housed the affected valve. When Dr MacArthur had reconstructed the artery part Nikki would then put in multiple stents to stabilise it and place a new valve in the last stent. This, they said, should give us a few years to either let science catch up to what they needed to fix things the way they want to or to come up with another plan.
This is the option Nikki, Elaine, Dr MacArthur and the rest of the team are happy with and I trust them completely but... In all honesty, I am still frustrated because this is all going to be dragged out over the next god knows how many years. I am not going to get that "probably ten years or there abouts" break between surgeries. I am not going to get the chance to start my life in terms of independence and working. I am not going to be strong enough to get a job so that I can start to publish writing (writing I am constantly changing my mind about). I kind of wish they would just replace the whole T, 20-30% isn't as bad as it could be but I know it's still a lot. I'm just stuck, again, waiting. But that seems to be how my whole life is going to go. Everyone says "It's not going to be like that" or "It's just how it is just now, it won't be forever" but it might as well be. I don't want to seem ungrateful because I'm not, I'm just fed up. And I think, after 8 years, I am entitled to be a bit disheartened. Nikki had to go after that but Elaine stuck around for a little chat. Dr MacArthur was supposed to be coming to see me at some point but when he got to my room, my door was closed and thinking I was asleep he left me be. At first, when I found out I thought "of all the people that have woken me up in the time I've been here you're the only one I do want to see!" And then my mum pointed out that he was the only one who left me to sleep, knowing how important it was to recovery.
Well regardless of how I feel or what the future holds I still had this surgery to recover from. On the Tuesday I had a man called Thomas come and do a quick ECG, at one point he dropped one of the sticky pads and I leant over to pick it up without thinking. I got "Atch-chachacha!" from him in response. When I asked what he said "You've just had heart surgery, you shouldn't be bending over like that!" I just laughed. I completely forget there was things I shouldn't be doing. We spoke briefly and he asked what I do I told him I was a writer. He said "Like Sci-fi?" all happy. I assured him I wasn't that smart and we spoke a little about Stan Lee and he left after making me promise to let him know if my work ends up on jammie trousers. I guess you had to be there. I got a wee picture with Diana who was the nurse on the ward and I called her my drug dealer because she always brought me little cups of tablets, she laughed at that. I wasn't laughing when she brought me a cup of K+ (potassium) to up my levels which always fall after surgery. It was the foulest thing ever. I don't remember exactly when she brought me this poison so I'm going to put it here.
On Wednesday Sandra and Nikki popped back in to see how I was doing and talk about the option they had come up with again to see how it sat with me now I had time to think about it and if I was okay. I told her what I will always tell her, "I'm always okay". Another photo of the team, we will corner Dr MacArthur one day.
We didn't tell anyone (announce it on facebook) because when we got back to the hotel I was exhausted and in pain.
Just as an added bit, I wanted to show you just how far surgery has come over the years. I was only a baby-four years old when I had my first surgeries so I don't remember what it looked like before that or even after it. Although, in some old pictures my scar looks quite red and raw even years after it and I wasn't sure what to expect after this one. But this is a photo, not trying to flash you all, for comparison - my nearly twenty year old scar is on the left, taken the night before travelling to Dalmuir and on the right is my scar a couple of weeks ago. It is actually less red now than the right hand side photo and has settled down. But the spotlight is usually on the surgery itself and not on the progress the cosmetic side has made and how the surgeons go out of their way to try and make life after surgery better.
It's been four weeks since the surgery and three weeks since I've been discharged. I have a sore shoulder which doesn't respond to any painkillers so I've had an X-ray (orthopaedic surgery was probably bouncing on it trying to reset my jaw) although Elaine says that it is a common complaint among post-surgery patients just because of the way your body lies during and after it so it may well be nothing more than that, I don't take the painkillers any more because I didn't like the feeling of being on them. I would have to take them sitting in my bed because I would fall asleep after them which was fine before but now I'm okay without them. Saying that. my body is still putting itself back together so I'm glad to have that pain in my shoulder because it reminds me to watch what I'm doing. This is honestly the hardest thing, physically, that I've ever had to do and this was only the pilot episode. I still have to do this at least once more in the recent future and once my body has had a little break (lets not forget I have tickets to see Lee Evans later on this year which I am not missing for anything) then I'm ready for the next episode.
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