Jack Daniels.
Well, it has been quite a week, there is a lot to put in here. It is four days of details, fails, explanations and frustrations so bare with me.
I do not know if I mentioned but the man from the booking office phoned me on Friday (22nd Nov) to confirm that he had sent out a letter first class on Thursday, when I told him that I had not received it he told me that it would say that my first appointment for the pre-assessment (to assess if I was fit for surgery) would be 2pm on the Monday at The Golden Jubilee. I repeated this back to him and explained that I was making sure that this was correct because I lived in Edinburgh so an early appointment on the Monday would not be possible. Then he confirmed that my appointment on the Tuesday would be early and we had a little back and forth about the short-comings of Scot Rail. As far as I was concerned, 2pm was perfect.
Well, imagine my surprise when, come Saturday morning, I got a letter saying I had an appointment at 9am on Monday morning as well as my (expected) appointment at 7:45am on Tuesday. I phoned them up and found them to be closed on the weekend so I left a message on Elaine's machine. She was really going to regret her job by the time this week was over. My mum said that since I had spoken to the guy after he had sent the letter that it could be that he was just correcting himself. She had a point but I just had a feeling something was going to go wrong considering that he never mentioned a wrong time on the letter while he was on the phone.
Just to make sure, when we got up early to go for breakfast on Monday morning with Nicole, I phoned the booking office.
Now this is not a word-for-word account but it's the jist.
I said to him, "I don't know if you remember speaking to me on Friday, you phoned to say you had sent out a letter on Thursday for appointments on Monday and Tuesday?"
Him: "Yeah."
Me: "Well, when I spoke to you you had said that my preassessment appointment was 2pm today but when I got the letter it said 9am."
Him: "So, could you not make it?"
Me: "Well, when you phoned on Friday you said that it was at 2pm?"
Him: "And it's not?"
Me: "Well the letter says 9am? Do you remember talking to me on Friday? I said that 2pm was perfect because I live in Edinburgh so an early appointment for the pre-assessment would not be possible?"
Him: "Oh right, yes, I do remember now!"
Me: "We talked about Scot Rail?"
Him: "Yes, of course! So I said 2 and it's... it's not..."
At this point he went quiet for about thirty-seconds. Eventually he said to come out for two and he would sort it out. So, because I had left her a message I phoned Elaine to brief her and she assured me that she would get it sorted, I should just come through for 2pm as planned. And when I was in the car on the way to breakfast I got a phonecall from another woman in the booking office asking why I had not turned up for the 9am appointment. I started to feel like no one was talking to each other here.
Anyway, we got breakfast, got a train and got to the hotel, but, surprise surprise, they did not have a reservation for us. I could have just walked out right there and then. We went along to my appointment anyway and told the receptionist (when she would let us talk) about the mix up and on the way to get an ECG and bloods I ran into Elaine. "How are you?" I honestly did not know whether to laugh or cry. She already knew about the appointment mix up, since she had been the one to fix it, so I mentioned the hotel and the fact that my Mum looked like she was going to collapse in a heap outside. So, Elaine to the rescue, went outside to deal with everything while I got my ECG and bloods done.
The woman who did my ECG was lovely, she told me about her twin daughters; one who loved One Direction and the other (my favourite) who does not understand who she is because of that haha! We spoke about Guns N' Roses, I'm a Celebrity Get Me Out of Here!, One Direction, trains, and more - a lot considering that it all happened in about 20 minutes. When I came out, Elaine had saved the day as usual after my Mum burst out crying in the hallway when she ripped her coat and got us a room, a room that my Mum had now gone away to sew her jacket in and gather herself. I then went off for a MRI, the doctor, Nikki, had managed to get them to squeeze me in since it was only a five minute scan of my groin area to have a look at the arteries that they would be accessing. We had arranged to meet with Elaine after the MRI outside of the outpatients department.
And now came the part of the day that seems to have been missing for 22 years. Elaine took me and my Mum into a room (after we had grabbed coffees etc) to explain what was gong on. And now, if you'd like to get out your medical journals and dictionaries I will now take you through the human anatomy. Or that is what I expected. That is what we had had for all of those years. But, then Elaine and Nikki came along. So here goes. Here is Taylor's 101 of what Elaine explained to us that day.
Basically, what they need to do was replace the valve they had put in when I was just about 4 years old. To do that they wanted to put a tube in through the artery in my leg, about the size of a pen, feeding it into my heart and when it was there they would use a balloon to blow up the stent. If you remember, a stent was a piece of metal tubing that looked like a very very small finger-trapper, when it was in place they would open it up with a balloon and it would house the valve. Again, if you remember, this would be the same procedure that I had done before, when they opened my chest and took my heart out to replace the valve. This was all a way of avoiding putting my body through the physical trauma and risks of that surgery. Nikki did say that, during the procedure, some people can have damage occur to the artery and if this happened, doing the same thing through the same access point would, most probably, not be an option again.
But she did say, and I cannot stress this enough, the procedure they had planned was still very much the same process underneath. Even though it would be happening under unbroken layers of skin, muscle, veins, bones and tissue it was exactly the same procedure, the exactly same stress and the exact same trauma. And she seemed glad that, even though she had to say it, I was under no illusion of the seriousness of what was going on. I may smile and remain un-phased but that does not stop me understanding the severity of it all.
I asked various questions, such as will my previous stroke have any kind of effect on the way they handle this or the risks involved, are there any procedures planned in the future, even for any other parts of my heart, she also mentioned things such as the possibility that emergency surgery may be required and a pacemaker may be fitted (my love affair with the microwave might have to end someday). I went away from that meeting feeling like I really understood what was going to happen. I had never felt that before. Never.
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The next morning we went to the Cardiology Day Ward and got all ready- gown, paper pants, pee now - all of that, the anesthetist spoke to me, he had ducked in the night before during the meeting just to say hi, he put in my canular and explained that they would put another line in my neck with three lines coming from it. I was first on the list so I was wheeled into the cath lab which I had been awake in under Local Anesthetic for my angiogram with Dr Owens. Various things happened in there, such as different cables and things were attached. Elaine was there talking to me while they hooked me up, when the anesthetist put a strip on my forehead he explained, as Elaine had just done, that it was to make sure that I stayed under the General the whole way through, which, if I understood that correctly, is amazing. Then I said to Elaine that I felt like Frankenstein's monster and that if, when I woke up, someone didn't exclaim "She's alive! She's alive!" I would be so disappointed. She laughed and told the various personnel that someone had to do that. I remember the flush going into my hand and maybe 20 seconds later I woke up. Obviously not but it felt like that.
I will share a bit of wisdom I learned that day that will come to make sense later but here it is: when you are under the effects of General Anesthetic do not think. Seriously. Do not think. Because under GA you do not think, you speak. I was told later that things I only remember thinking I actually said as I was coming round. God.
Anyway, when I came round and was still half-cut the doctor's came round. No dice. They had not been able to replace the valve so open heart surgery was back on the table. They had tried for 6 hours to find a way for it to work but to no avail. Now, if you thought you had to stick with me earlier then you really should go get a cuppa and come back ready to try to follow this because I will go around and around in circles and for that, I apologise.
Okay, remember when I said about the stents and valve being put in? Well, when there is foreign things in your body, your body tries to fight it so in these cases it sends calcium. Dun-du-du-du! CALCIUM! Sorry... Anyway, if it can't get rid of it, it effectively binds it to your tissue which is actually a really helpful thing when it comes to these procedures. Your body is supposed to do this, it means that your body is reacting the way it is meant to. So basically, mines was ready for a scrap. After a while that calcium builds up and hardens the valve leaflets, so much so that they stop working so well and that's why so much upkeep is needed, in terms of ballooning and stenting. So when the doctors went in to replace the valve what they found was that there was so much calcium build up and calcified valves and stents that there was just not enough room to attempt ballooning it and putting in another valve.
Nikki had a surgical team on standby in case any emergency intervention was needed and they said to her that they could go in right there and do the valve replacement and she said no, wake her up and lets plan this. That is exactly the kind of doctor that you want. She did not try to force the procedure and she did not try to push forward with surgical intervention when it was not needed without first talking to me. She had the paperwork allowing her to do that and she said no, let's just plan this.
They explained that what they would do was remove the part of the pulmonary artery that had the calcium build up and replace the whole thing, almost like starting from scratch - it's called a pulmonary homoraph - and since they managed not to damaged any of the artery during the procedure, in 10-15 years when a new valve is needed the procedure that they had just tried can be attempted again.
So, it did not work and I will need a valve replacement through open heart surgery. But, they did not damage the artery meaning the procedure can be tried again in years to come, when they do it it will be like clear of calcium (which builds up quicker in children than in adults), it was nothing that the team did that meant the procedure did not work it was the calcium build up which means that my body is doing exactly what it is meant to do. AND someone in Leeds got a valve that they thought they weren't. Although, the person after me in the queue may have been sent home since hers was a procedure under LA (they tried for hours longer than they expected my procedure to take) but she stays in Glasgow so it's not too bad.
Elaine and Nikki came around at a later time to talk to me while I was actually aware of what the hell was going on and in control of my own mouth and limbs. Oh yeah, my bloody mouth. Well, Elaine said to me "Do you remember the last thing that you said to me?" I thought it was the Frankenstein's monster thing. *shakes head*... Nope. Remember the angiogram procedure? The nurse said to me, "What's your poison?" And I said "Jack Daniels" and she said "The Local will feel like you've had some of that"? Well, I was thinking of that as the GA started to make me feel woozy and the last thing that I said to Elaine, before conking out, was "Jack Daniels." *shakes head* ...Doughnut. She thought it was hilarious, I was mortified because I only remember thinking it. And that is not all.
Well, apparently when I was still coming around and Nikki and Elaine first came to say that they hadn't been able to put the valve in, I had thought "I wonder if the calcium came loose if it would do anything, anything bad... Don't ask that, that's a stupid question." Which I only thought of, when an episode of House MD flashed in my mind. It was one when they were treating a condition, once they figured it out, all was well until the patient went back down to critical and they couldn't figure out why. What they found out was their treatment had knocked iron loose that had been lodged and sitting doing no harm. When it was knocked free it tried to escape so it traveled to the lungs and, since iron is bigger than co2 and o2 it escaped by ripping holes in the patients lungs. So I thought, I wonder what a big bundle of unexpected calcium would do if it got free and went roaming around my blood stream. Apparently I asked, in a slightly slurred way, if that had happened and Nikki had said it hadn't. God, I am so embarrassed for asking such a stupid question but in my defence I was juiced.
Also when I was juiced Dr MacArthur came around and said "Hi, I'm Dr MacArthur." And all I could think was "I know that name, why do I know that name, MacArthur Glen? Don't be silly, that's a shopping place.. Oh shit, he's the surgeon Nikki mentioned. Listen to him." And he said that they would be thinking March for the surgery but I had already mentioned that my Mum would be on holiday in March (don't remember that either). Now, don't think "Oh for god's sake, Taylor." If he had said "Well, I'm afraid that is tough." Then it just would have had to be but he said April so there obviously was not a problem, apart from the fact that I don't remember mentioning the holiday but apparently I did, not my Mum, I did. I have to say, my brain still works quite well, if a bit strangely, while drugged.
They decided to keep me in that night for observation anyway. Kirsty and Angela were lovely. Kirsty was a student nurse but she was brilliant. They were getting annoyed with me because I kept saying sorry but I'd hate to be one of those patients who buzzes for everything. It seems I had picked up some urine infection from dehydration and, of course I could not get up so I kept saying "I think I need to pee, I'm sorry, I'm sorry" and they would say "Stop saying sorry it is what we're here for!" After a few hours I was allowed to sit up and just in time for dinner. When I had eventually convinced Mum to go get food while I ate, she came back with stuff. I was washing my face and left a puddle all over the place, Mum went to get water and numpty here... Me... without thinking lifted my leg to wipe my soaked feet. Cue bleed. Numpty. My dressing was changed by Nicole, she stood in the blood at one point and left a trail all over the ward that Kirsty followed in behind with a wipe. I joked that if they needed to find her they could just follow it and she said "Just like the yellow brick road" which I thought was so strange. Then I was punished by being confined to my bed again for an hour or so. I could lie in my bed all day but the minute you tell me that I cannot move then I have to move, you cannot keep me here, this is slavery, kidnapping, jail ARGHHHHH I CANT BREATHE! Not that I'm a drama queen or anything. *fixes crocked crown*
At some point Angela took the line out that was in my neck and the stitches. To be honest I never really understood what that was for, it was explained but I forget. It was one line and it had three or four branches coming out.
Anywho, the rest of the night was good, I sat with a personal DVD player, jaffa cakes, pringles and Rowntrees Randoms and watched Lewis all night until about half 2. But when they shut the day room and I had ran out of water so I went to sleep. Under protest. As if I had not made myself at home enough, I took the end off of the bed so that I could actually lie out straight, turned off the machines that were on standby and took all the sheets off of the bed. I don't think my Mum was as comfy as I was and she was in a room in the hotel attached to the hospital. I was quite happy munching away, watching Laurence Fox and Kevin Whately solving some murderings.
Single rooms that even have their own bathrooms really do make the difference to someone like me who has irregular sleep patterns and is usually up and down all night.
The nurses changed shifts, Angela went home after saying goodbye and Kirsty went off to watch I'm a Celebrity Get Me Out of Here and abandoned me. That's right. Abandoned. The night nurses came on, there was Sandra, who Angela said liked Jack Daniels too, and Valerie who had red hair so, of course, I had to sing to her. I had to. I did. Tammy would never have forgiven me if I had not. So I did. Then I was woken up at quarter to eight by Kirsty on Wednesday. When she first came in, the sound of the door opening made me think I was in my room and Mum was waking me up so I instinctively turned away from her (basically says "Noooooo, I'm asleep... No, you can't make me.") Then I realised so I turned back. Eventually I got up, the thought of breakfast may have helped. May have. At half past eight, still no breakfast but a woman came up with an ECHO machine (like an ultrasound on your chest, as opposed to an ECG which is when they put circle stickers on you that are hooked up to a machine) so while she was doing this, I was facing the door and saw Kirsty come in with a tray of breakfast and put it on the sink. It felt like forever before the woman was finished.
When she was cleaning up, Nikki and two doctors came in to have a look and chat. Nikki had a look at the access point of the femoral artery in my leg - which is in the groin area. I felt sorry for the male doctor at this point because he kept looking at various things in the room. Like he had suddenly developed a certain likening for the ceiling, his shoe, the sink, ceiling again. Oh wait, he remembered something outside, out he goes and when he comes back he really likes that sink and ceiling again. Nikki was pleased with the puncture sight and said to keep the dressing on for about 48 hours. Also that they wanted me back for a CT scan in 6 weeks. Remember the last CT scan? Ten minutes. 60 quid for the train. For a ten minute scan? Anyway, Elaine is on the case. Elaine is always on the case. Kirsty told us that I'm a Celeb... was not even on the night before because of the Champions League and her boyfriend took her car out to Morrisons that night and the car broke down so she almost never made it to work that morning. I think she just wanted to see me to be honest, haha!
Elaine is brilliant, she even brings me stuff that I forgot she said she would. She brought me a couple of leaflets with information that I had forgotten I had asked for. With websites written down that I had forgotten that I had asked for. And names and websites of congenital heart support groups that I didn't even ask for. On top of that, she brought with her a sort-of display stent, shrunken-down (when they put it in the artery they use a balloon to open it up so that they can sit the valve in it) to show me what it looked like. Which I had also forgotten about. This was not the one that she showed me but here is a stent blown up (which they do in the heart) and shrunken down (while they put it in).
I get the various parts of wiring removed, Angela removed the stitches from my neck the night before and someone took my canular out and I was discharged. So we went back to the hotel with the intention of packing and leaving. I lay down for five minutes and crashed out. I woke up hours later. It was a feeling I have never had before, I've had insomnia, I've been physically knackered from doing too much but this was new. It was like my motor was running but just not fast enough to actually do anything other than biological function. We went down to get food from the cafeteria and it was amazing but about half way into the meal I just felt like I could not move properly. When we went back up the stairs I crashed out again. At some point, I don't know if it was the first crash or the second, Mum had phoned Elaine and, since she was off that day, spoke to Jim, her colleague, to say that basically since the hotel was booked until Friday could we stay in that night (Wed night to Thurs morning) because I had just crashed out. He was lovely and basically said of course as long as I was okay, stay there and just make sure I was okay. So we stayed that night. I did wake up again, hours later, for an hour or two and then I was out again.
The next morning we went back up to the ward (NSD), like they said we could, to get them to check the wound because it had been going black, like when blood begins to clot properly on a wound, then it went red again. Remember the artery is not closed, which is why I had to lie down so much, there was no use of collagen like with the Angiogram, it was sealed using a pressure type of plaster but that was changed to a "Bioclusive transparent plaster" (BTP) when it bled out. So it had began to clot but getting up and down in the night had opened it again, not massively, but since we were still there we thought we'd get them to check. Doctor Ballantine did an ultrasound and said there was no bleed or clots so that was okay. They did decide to put stitches in it, just like Kirsty had predicted, (she did not think that she was right because she thinks that she is "just a student nurse" even though I said "No, you're the future") so the doctor who liked the look of the ceiling ended up having to stitch me up anyway, Maggie (who I never actually found out what she did, but she had the same uniform as Angela) helped there and they spoke about Dr Owens (who's name is Colm, which is just the best name ever: Colm Owens, you just never hear a name like that, it's brilliant), who has left but still comes back to do certain procedures even though someone else has his job now, Christmas with their kids and shopping and I felt like such a Scrooge. I thought I should really try to be happier in things and then the doctor started tugging away at the thread and I thought nah. (I didn't feel anything, haha) He put in three stitches just to make sure and then another of those BTP over the top. Which, they have this thing now, called Appeal which takes those BTPs off, you have no idea how good this is, especially considering that I had so many of them on and off in my groin area over the past few days and I have another one on my left groin and another on my neck so they gave me a bundle of them. So I have to get a nurse at my doctors to take out the stitches in about 7 days, but other than that, I'm all good. :)
It's funny that again, although I never had a chance to talk to the girl that I shared a room with in the Day Ward with, just like with Laura the last time, her name was Dionne and she was the one in after me, I did meet a guy called Michael in the Day Room of the NSD ward when I was waiting for them to just check the area before we went home on Thursday. He told me that he had been there since half past nine (This was at 12ish), he lives in Dublin with his family but was originally from here and had suddenly been taken into hospital (an ambulance costs 100EURO through there) and it seems he has heart failure but they don't know why yet, and he has been living back here for two months until they figure it out. They think it has been happening for about 4 or 5 years but this is the first time he has known anything about it, they were going to, firstly, try to bring his heart rhythm back down to normal while they figure out what the cause is. But he is 28 years old and all of a sudden there he is in a ward in Dalmuir, he does not look scared but he was nervous. I could tell by the way he reacted when he realised I was a lifer. I said "I wasn't diagnosed until I was 4 months old" and his face, I will never forget it, he said "Oh, so you're not just finding this out now? You'll be well used to it?" Or words to that effect but his face was a mix of surprise, sympathy and envy. Maybe not envy but realisation. As if he had thought "Aw, that's why she doesn't look like how I feel." Cause, while he had his earphones on and was talking, he had a nervous laugh, the kind of nervous laugh a family man does when he's going down an unfamiliar path and he is not his first priority anymore. I'll never forget it. Just like I'll never forget Nikki's face when she told me that the procedure didn't work (sheer disappointment).
All in all, the week could have gone better but it could have gone bloody worse. So, bring on April. Looks like I won't be getting drunk for my 23rd. Who cares, as long as I have a 23rd. And I bloody well will. You know what they say about me, she's got a lot of heart. Turns out I have a lot of calcium too. :)
I do not know if I mentioned but the man from the booking office phoned me on Friday (22nd Nov) to confirm that he had sent out a letter first class on Thursday, when I told him that I had not received it he told me that it would say that my first appointment for the pre-assessment (to assess if I was fit for surgery) would be 2pm on the Monday at The Golden Jubilee. I repeated this back to him and explained that I was making sure that this was correct because I lived in Edinburgh so an early appointment on the Monday would not be possible. Then he confirmed that my appointment on the Tuesday would be early and we had a little back and forth about the short-comings of Scot Rail. As far as I was concerned, 2pm was perfect.
Well, imagine my surprise when, come Saturday morning, I got a letter saying I had an appointment at 9am on Monday morning as well as my (expected) appointment at 7:45am on Tuesday. I phoned them up and found them to be closed on the weekend so I left a message on Elaine's machine. She was really going to regret her job by the time this week was over. My mum said that since I had spoken to the guy after he had sent the letter that it could be that he was just correcting himself. She had a point but I just had a feeling something was going to go wrong considering that he never mentioned a wrong time on the letter while he was on the phone.
Just to make sure, when we got up early to go for breakfast on Monday morning with Nicole, I phoned the booking office.
Now this is not a word-for-word account but it's the jist.
I said to him, "I don't know if you remember speaking to me on Friday, you phoned to say you had sent out a letter on Thursday for appointments on Monday and Tuesday?"
Him: "Yeah."
Me: "Well, when I spoke to you you had said that my preassessment appointment was 2pm today but when I got the letter it said 9am."
Him: "So, could you not make it?"
Me: "Well, when you phoned on Friday you said that it was at 2pm?"
Him: "And it's not?"
Me: "Well the letter says 9am? Do you remember talking to me on Friday? I said that 2pm was perfect because I live in Edinburgh so an early appointment for the pre-assessment would not be possible?"
Him: "Oh right, yes, I do remember now!"
Me: "We talked about Scot Rail?"
Him: "Yes, of course! So I said 2 and it's... it's not..."
At this point he went quiet for about thirty-seconds. Eventually he said to come out for two and he would sort it out. So, because I had left her a message I phoned Elaine to brief her and she assured me that she would get it sorted, I should just come through for 2pm as planned. And when I was in the car on the way to breakfast I got a phonecall from another woman in the booking office asking why I had not turned up for the 9am appointment. I started to feel like no one was talking to each other here.
Anyway, we got breakfast, got a train and got to the hotel, but, surprise surprise, they did not have a reservation for us. I could have just walked out right there and then. We went along to my appointment anyway and told the receptionist (when she would let us talk) about the mix up and on the way to get an ECG and bloods I ran into Elaine. "How are you?" I honestly did not know whether to laugh or cry. She already knew about the appointment mix up, since she had been the one to fix it, so I mentioned the hotel and the fact that my Mum looked like she was going to collapse in a heap outside. So, Elaine to the rescue, went outside to deal with everything while I got my ECG and bloods done.
The woman who did my ECG was lovely, she told me about her twin daughters; one who loved One Direction and the other (my favourite) who does not understand who she is because of that haha! We spoke about Guns N' Roses, I'm a Celebrity Get Me Out of Here!, One Direction, trains, and more - a lot considering that it all happened in about 20 minutes. When I came out, Elaine had saved the day as usual after my Mum burst out crying in the hallway when she ripped her coat and got us a room, a room that my Mum had now gone away to sew her jacket in and gather herself. I then went off for a MRI, the doctor, Nikki, had managed to get them to squeeze me in since it was only a five minute scan of my groin area to have a look at the arteries that they would be accessing. We had arranged to meet with Elaine after the MRI outside of the outpatients department.
And now came the part of the day that seems to have been missing for 22 years. Elaine took me and my Mum into a room (after we had grabbed coffees etc) to explain what was gong on. And now, if you'd like to get out your medical journals and dictionaries I will now take you through the human anatomy. Or that is what I expected. That is what we had had for all of those years. But, then Elaine and Nikki came along. So here goes. Here is Taylor's 101 of what Elaine explained to us that day.
Basically, what they need to do was replace the valve they had put in when I was just about 4 years old. To do that they wanted to put a tube in through the artery in my leg, about the size of a pen, feeding it into my heart and when it was there they would use a balloon to blow up the stent. If you remember, a stent was a piece of metal tubing that looked like a very very small finger-trapper, when it was in place they would open it up with a balloon and it would house the valve. Again, if you remember, this would be the same procedure that I had done before, when they opened my chest and took my heart out to replace the valve. This was all a way of avoiding putting my body through the physical trauma and risks of that surgery. Nikki did say that, during the procedure, some people can have damage occur to the artery and if this happened, doing the same thing through the same access point would, most probably, not be an option again.
But she did say, and I cannot stress this enough, the procedure they had planned was still very much the same process underneath. Even though it would be happening under unbroken layers of skin, muscle, veins, bones and tissue it was exactly the same procedure, the exactly same stress and the exact same trauma. And she seemed glad that, even though she had to say it, I was under no illusion of the seriousness of what was going on. I may smile and remain un-phased but that does not stop me understanding the severity of it all.
I asked various questions, such as will my previous stroke have any kind of effect on the way they handle this or the risks involved, are there any procedures planned in the future, even for any other parts of my heart, she also mentioned things such as the possibility that emergency surgery may be required and a pacemaker may be fitted (my love affair with the microwave might have to end someday). I went away from that meeting feeling like I really understood what was going to happen. I had never felt that before. Never.
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The next morning we went to the Cardiology Day Ward and got all ready- gown, paper pants, pee now - all of that, the anesthetist spoke to me, he had ducked in the night before during the meeting just to say hi, he put in my canular and explained that they would put another line in my neck with three lines coming from it. I was first on the list so I was wheeled into the cath lab which I had been awake in under Local Anesthetic for my angiogram with Dr Owens. Various things happened in there, such as different cables and things were attached. Elaine was there talking to me while they hooked me up, when the anesthetist put a strip on my forehead he explained, as Elaine had just done, that it was to make sure that I stayed under the General the whole way through, which, if I understood that correctly, is amazing. Then I said to Elaine that I felt like Frankenstein's monster and that if, when I woke up, someone didn't exclaim "She's alive! She's alive!" I would be so disappointed. She laughed and told the various personnel that someone had to do that. I remember the flush going into my hand and maybe 20 seconds later I woke up. Obviously not but it felt like that.
I will share a bit of wisdom I learned that day that will come to make sense later but here it is: when you are under the effects of General Anesthetic do not think. Seriously. Do not think. Because under GA you do not think, you speak. I was told later that things I only remember thinking I actually said as I was coming round. God.
Anyway, when I came round and was still half-cut the doctor's came round. No dice. They had not been able to replace the valve so open heart surgery was back on the table. They had tried for 6 hours to find a way for it to work but to no avail. Now, if you thought you had to stick with me earlier then you really should go get a cuppa and come back ready to try to follow this because I will go around and around in circles and for that, I apologise.
Okay, remember when I said about the stents and valve being put in? Well, when there is foreign things in your body, your body tries to fight it so in these cases it sends calcium. Dun-du-du-du! CALCIUM! Sorry... Anyway, if it can't get rid of it, it effectively binds it to your tissue which is actually a really helpful thing when it comes to these procedures. Your body is supposed to do this, it means that your body is reacting the way it is meant to. So basically, mines was ready for a scrap. After a while that calcium builds up and hardens the valve leaflets, so much so that they stop working so well and that's why so much upkeep is needed, in terms of ballooning and stenting. So when the doctors went in to replace the valve what they found was that there was so much calcium build up and calcified valves and stents that there was just not enough room to attempt ballooning it and putting in another valve.
Nikki had a surgical team on standby in case any emergency intervention was needed and they said to her that they could go in right there and do the valve replacement and she said no, wake her up and lets plan this. That is exactly the kind of doctor that you want. She did not try to force the procedure and she did not try to push forward with surgical intervention when it was not needed without first talking to me. She had the paperwork allowing her to do that and she said no, let's just plan this.
They explained that what they would do was remove the part of the pulmonary artery that had the calcium build up and replace the whole thing, almost like starting from scratch - it's called a pulmonary homoraph - and since they managed not to damaged any of the artery during the procedure, in 10-15 years when a new valve is needed the procedure that they had just tried can be attempted again.
So, it did not work and I will need a valve replacement through open heart surgery. But, they did not damage the artery meaning the procedure can be tried again in years to come, when they do it it will be like clear of calcium (which builds up quicker in children than in adults), it was nothing that the team did that meant the procedure did not work it was the calcium build up which means that my body is doing exactly what it is meant to do. AND someone in Leeds got a valve that they thought they weren't. Although, the person after me in the queue may have been sent home since hers was a procedure under LA (they tried for hours longer than they expected my procedure to take) but she stays in Glasgow so it's not too bad.
Elaine and Nikki came around at a later time to talk to me while I was actually aware of what the hell was going on and in control of my own mouth and limbs. Oh yeah, my bloody mouth. Well, Elaine said to me "Do you remember the last thing that you said to me?" I thought it was the Frankenstein's monster thing. *shakes head*... Nope. Remember the angiogram procedure? The nurse said to me, "What's your poison?" And I said "Jack Daniels" and she said "The Local will feel like you've had some of that"? Well, I was thinking of that as the GA started to make me feel woozy and the last thing that I said to Elaine, before conking out, was "Jack Daniels." *shakes head* ...Doughnut. She thought it was hilarious, I was mortified because I only remember thinking it. And that is not all.
Well, apparently when I was still coming around and Nikki and Elaine first came to say that they hadn't been able to put the valve in, I had thought "I wonder if the calcium came loose if it would do anything, anything bad... Don't ask that, that's a stupid question." Which I only thought of, when an episode of House MD flashed in my mind. It was one when they were treating a condition, once they figured it out, all was well until the patient went back down to critical and they couldn't figure out why. What they found out was their treatment had knocked iron loose that had been lodged and sitting doing no harm. When it was knocked free it tried to escape so it traveled to the lungs and, since iron is bigger than co2 and o2 it escaped by ripping holes in the patients lungs. So I thought, I wonder what a big bundle of unexpected calcium would do if it got free and went roaming around my blood stream. Apparently I asked, in a slightly slurred way, if that had happened and Nikki had said it hadn't. God, I am so embarrassed for asking such a stupid question but in my defence I was juiced.
Also when I was juiced Dr MacArthur came around and said "Hi, I'm Dr MacArthur." And all I could think was "I know that name, why do I know that name, MacArthur Glen? Don't be silly, that's a shopping place.. Oh shit, he's the surgeon Nikki mentioned. Listen to him." And he said that they would be thinking March for the surgery but I had already mentioned that my Mum would be on holiday in March (don't remember that either). Now, don't think "Oh for god's sake, Taylor." If he had said "Well, I'm afraid that is tough." Then it just would have had to be but he said April so there obviously was not a problem, apart from the fact that I don't remember mentioning the holiday but apparently I did, not my Mum, I did. I have to say, my brain still works quite well, if a bit strangely, while drugged.
They decided to keep me in that night for observation anyway. Kirsty and Angela were lovely. Kirsty was a student nurse but she was brilliant. They were getting annoyed with me because I kept saying sorry but I'd hate to be one of those patients who buzzes for everything. It seems I had picked up some urine infection from dehydration and, of course I could not get up so I kept saying "I think I need to pee, I'm sorry, I'm sorry" and they would say "Stop saying sorry it is what we're here for!" After a few hours I was allowed to sit up and just in time for dinner. When I had eventually convinced Mum to go get food while I ate, she came back with stuff. I was washing my face and left a puddle all over the place, Mum went to get water and numpty here... Me... without thinking lifted my leg to wipe my soaked feet. Cue bleed. Numpty. My dressing was changed by Nicole, she stood in the blood at one point and left a trail all over the ward that Kirsty followed in behind with a wipe. I joked that if they needed to find her they could just follow it and she said "Just like the yellow brick road" which I thought was so strange. Then I was punished by being confined to my bed again for an hour or so. I could lie in my bed all day but the minute you tell me that I cannot move then I have to move, you cannot keep me here, this is slavery, kidnapping, jail ARGHHHHH I CANT BREATHE! Not that I'm a drama queen or anything. *fixes crocked crown*
At some point Angela took the line out that was in my neck and the stitches. To be honest I never really understood what that was for, it was explained but I forget. It was one line and it had three or four branches coming out.
This was me, first food of the day, neck been detangled and hair a total mess but I was fine.
Anywho, the rest of the night was good, I sat with a personal DVD player, jaffa cakes, pringles and Rowntrees Randoms and watched Lewis all night until about half 2. But when they shut the day room and I had ran out of water so I went to sleep. Under protest. As if I had not made myself at home enough, I took the end off of the bed so that I could actually lie out straight, turned off the machines that were on standby and took all the sheets off of the bed. I don't think my Mum was as comfy as I was and she was in a room in the hotel attached to the hospital. I was quite happy munching away, watching Laurence Fox and Kevin Whately solving some murderings.
The nurses changed shifts, Angela went home after saying goodbye and Kirsty went off to watch I'm a Celebrity Get Me Out of Here and abandoned me. That's right. Abandoned. The night nurses came on, there was Sandra, who Angela said liked Jack Daniels too, and Valerie who had red hair so, of course, I had to sing to her. I had to. I did. Tammy would never have forgiven me if I had not. So I did. Then I was woken up at quarter to eight by Kirsty on Wednesday. When she first came in, the sound of the door opening made me think I was in my room and Mum was waking me up so I instinctively turned away from her (basically says "Noooooo, I'm asleep... No, you can't make me.") Then I realised so I turned back. Eventually I got up, the thought of breakfast may have helped. May have. At half past eight, still no breakfast but a woman came up with an ECHO machine (like an ultrasound on your chest, as opposed to an ECG which is when they put circle stickers on you that are hooked up to a machine) so while she was doing this, I was facing the door and saw Kirsty come in with a tray of breakfast and put it on the sink. It felt like forever before the woman was finished.
When she was cleaning up, Nikki and two doctors came in to have a look and chat. Nikki had a look at the access point of the femoral artery in my leg - which is in the groin area. I felt sorry for the male doctor at this point because he kept looking at various things in the room. Like he had suddenly developed a certain likening for the ceiling, his shoe, the sink, ceiling again. Oh wait, he remembered something outside, out he goes and when he comes back he really likes that sink and ceiling again. Nikki was pleased with the puncture sight and said to keep the dressing on for about 48 hours. Also that they wanted me back for a CT scan in 6 weeks. Remember the last CT scan? Ten minutes. 60 quid for the train. For a ten minute scan? Anyway, Elaine is on the case. Elaine is always on the case. Kirsty told us that I'm a Celeb... was not even on the night before because of the Champions League and her boyfriend took her car out to Morrisons that night and the car broke down so she almost never made it to work that morning. I think she just wanted to see me to be honest, haha!
Elaine is brilliant, she even brings me stuff that I forgot she said she would. She brought me a couple of leaflets with information that I had forgotten I had asked for. With websites written down that I had forgotten that I had asked for. And names and websites of congenital heart support groups that I didn't even ask for. On top of that, she brought with her a sort-of display stent, shrunken-down (when they put it in the artery they use a balloon to open it up so that they can sit the valve in it) to show me what it looked like. Which I had also forgotten about. This was not the one that she showed me but here is a stent blown up (which they do in the heart) and shrunken down (while they put it in).
I get the various parts of wiring removed, Angela removed the stitches from my neck the night before and someone took my canular out and I was discharged. So we went back to the hotel with the intention of packing and leaving. I lay down for five minutes and crashed out. I woke up hours later. It was a feeling I have never had before, I've had insomnia, I've been physically knackered from doing too much but this was new. It was like my motor was running but just not fast enough to actually do anything other than biological function. We went down to get food from the cafeteria and it was amazing but about half way into the meal I just felt like I could not move properly. When we went back up the stairs I crashed out again. At some point, I don't know if it was the first crash or the second, Mum had phoned Elaine and, since she was off that day, spoke to Jim, her colleague, to say that basically since the hotel was booked until Friday could we stay in that night (Wed night to Thurs morning) because I had just crashed out. He was lovely and basically said of course as long as I was okay, stay there and just make sure I was okay. So we stayed that night. I did wake up again, hours later, for an hour or two and then I was out again.
The next morning we went back up to the ward (NSD), like they said we could, to get them to check the wound because it had been going black, like when blood begins to clot properly on a wound, then it went red again. Remember the artery is not closed, which is why I had to lie down so much, there was no use of collagen like with the Angiogram, it was sealed using a pressure type of plaster but that was changed to a "Bioclusive transparent plaster" (BTP) when it bled out. So it had began to clot but getting up and down in the night had opened it again, not massively, but since we were still there we thought we'd get them to check. Doctor Ballantine did an ultrasound and said there was no bleed or clots so that was okay. They did decide to put stitches in it, just like Kirsty had predicted, (she did not think that she was right because she thinks that she is "just a student nurse" even though I said "No, you're the future") so the doctor who liked the look of the ceiling ended up having to stitch me up anyway, Maggie (who I never actually found out what she did, but she had the same uniform as Angela) helped there and they spoke about Dr Owens (who's name is Colm, which is just the best name ever: Colm Owens, you just never hear a name like that, it's brilliant), who has left but still comes back to do certain procedures even though someone else has his job now, Christmas with their kids and shopping and I felt like such a Scrooge. I thought I should really try to be happier in things and then the doctor started tugging away at the thread and I thought nah. (I didn't feel anything, haha) He put in three stitches just to make sure and then another of those BTP over the top. Which, they have this thing now, called Appeal which takes those BTPs off, you have no idea how good this is, especially considering that I had so many of them on and off in my groin area over the past few days and I have another one on my left groin and another on my neck so they gave me a bundle of them. So I have to get a nurse at my doctors to take out the stitches in about 7 days, but other than that, I'm all good. :)
It's funny that again, although I never had a chance to talk to the girl that I shared a room with in the Day Ward with, just like with Laura the last time, her name was Dionne and she was the one in after me, I did meet a guy called Michael in the Day Room of the NSD ward when I was waiting for them to just check the area before we went home on Thursday. He told me that he had been there since half past nine (This was at 12ish), he lives in Dublin with his family but was originally from here and had suddenly been taken into hospital (an ambulance costs 100EURO through there) and it seems he has heart failure but they don't know why yet, and he has been living back here for two months until they figure it out. They think it has been happening for about 4 or 5 years but this is the first time he has known anything about it, they were going to, firstly, try to bring his heart rhythm back down to normal while they figure out what the cause is. But he is 28 years old and all of a sudden there he is in a ward in Dalmuir, he does not look scared but he was nervous. I could tell by the way he reacted when he realised I was a lifer. I said "I wasn't diagnosed until I was 4 months old" and his face, I will never forget it, he said "Oh, so you're not just finding this out now? You'll be well used to it?" Or words to that effect but his face was a mix of surprise, sympathy and envy. Maybe not envy but realisation. As if he had thought "Aw, that's why she doesn't look like how I feel." Cause, while he had his earphones on and was talking, he had a nervous laugh, the kind of nervous laugh a family man does when he's going down an unfamiliar path and he is not his first priority anymore. I'll never forget it. Just like I'll never forget Nikki's face when she told me that the procedure didn't work (sheer disappointment).
All in all, the week could have gone better but it could have gone bloody worse. So, bring on April. Looks like I won't be getting drunk for my 23rd. Who cares, as long as I have a 23rd. And I bloody well will. You know what they say about me, she's got a lot of heart. Turns out I have a lot of calcium too. :)
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