Not What We Expected

“But if you close your eyes

Does it almost feel like nothing changed at all?

And if you close your eyes

Does it almost feel like you’ve been here before?

How am I gonna be an optimist about this?”

Bastille, Pompeii 

“There’s a pain in my heart and a pain in my chest

I wanna feel human again

There’s a pain in my head and I’m losing my breath 

I wanna feel human again

Human again”

Kodaline, Human Again 

As I laid in the CCU after 6.5 hours in theatres and just as many after that trying to shake off the anaesthetic enough to remain awake, these are the songs I played. I had prepared myself for outcomes at either end of the spectrum: new me or no me (fixed or dead, basically. Improved or killed). I hadn’t been prepared for the in-between. I hadn’t been prepared to wake up in recovery to the nurses discussing my tachycardia, and manage to hold on to enough waking moments to look up at my ECG trace and find my heart was just as grumpy as before. Before the anaesthetic snatched me back to (a far less deep) sleep for a few hours, I thought just long enough for my heart to sink. My consultant bumped into my mum on her way to the CCU as he was leaving the staff changing rooms, having swapped his surgical scrubs for his suit again. He told her some of it was guesswork, and that the last resort part/ all of it may need to be repeated. The next morning a doctor I hadn’t met before looked at the 10 lead ECG I was hooked up to and told me the surgery hadn’t worked. I’d need it again. Just like that, like it was nothing. I already knew. To them it’s just everyday, they get to walk away from it, they get to switch off from it, shut the door on it, walk away from the consequences. But to me… this is a disproportionately. Big. Deal.

(Oh, in case you haven’t noticed yet, Skippy – my heart – has totally stollen this post… apologies for the boring medical nature of this post but… this is life, and unfortunately I couldn’t choose to live a different one so I could blog about something worth reading about. I hate this part of me, this side of my life, but it’s a huge part of my life and if you choose to read on then… thank you)

In 24 hours my body went through it all: the terror of being in a hospital (as the surgical team all lined up in front of me and introduced themselves one by one in theatre, I trembled with fear and told them I was simply cold. The consultant anaesthetist held my hand. One of the theatre nurses that wheeled me to theatre had PTSD and was awesomely understanding), an anaesthetic, keyhole heart surgery (including a new-ish procedure to try to modify/remodel part – or as they discovered, two parts – of my heart), acidosis on top of already low blood pressure post-surgically (yes, I went in for heart stuff and could have died of a different thing), bleeding from one of the four puncture sites they went in through that resulted in a lump the size of my hand forming under my skin, two raw and bleeding cuts at the back of my throat from the endotracheal tube (which hurt to an impressive yet unexpected degree and left me unable to talk for a while but now just hurts like someone has taken a cheese grater to the back of my throat) oh, and rather a lot of PVCs (extra heartbeats).

I made one nurse cry that night by telling her I’d planned to join a gym when I woke up, and that I’d bought myself running shoes for my 21st birthday that I promised myself I wouldn’t wear until it was safe to try and run in them. I almost cried as I told her I felt like I’d never get to wear them. We talked about me – about the past few weeks, about all my time in hospital, about how people walk away from that because they don’t know how to deal with it. She told me I was incredible and that she wanted to clone me. I pointed out that probably wouldn’t be the best idea, given y’know… me. She spent about ten minutes trying to get me to say I would use my buzzer if I needed anything and there was nobody about, because I felt bad asking for anything at all. So naturally I just… didn’t tell anyone. The pain was bearable so I wasn’t going to bother anyone for pain relief, and I could hold my pee for over an hour before I would guiltily murmur between profuse apologies that the dam was about to be breached. I’m terrified of medical people. These doctors and nurses were so nice though, they spent ages just talking to me, trying to relax me, telling me they were paid to be there for me and it wouldn’t annoy them at Allan’s could I please stop thinking of myself as a bother and let them be there.

Emotionally I was done as soon as I fully came round that evening. Even as they discovered I was in acidosis in the early morning, I still told them I was going home. I’d had a sleepless night of crying and flashbacks and fear. I felt disempowered and afraid and I was intimidated to the point I was almost too scared to speak to anyone medical. They didn’t really know how to manage acidosis (seriously, I had to tell them until the appropriate consultant appeared) so it was pretty easy to persuade them all was well a few hours later with no further blood tests.

After the surgery I got breathless standing up. I got breathless walking to the bathroom. My chest HURT even though they hadn’t had to go in through my chest (I was warned that if the whole keyhole thing didn’t work, they’d take the more direct route instead). Not too unfamiliar. Only, I hadn’t done anything. And I hadn’t gone in there like that, and this pain was in new places. I wasn’t worried by it, just annoyed at my heart. The doctor was all “well you did have heart surgery less than 24 hours ago… it’s going to be a little upset and sore while it heals itself.” Upset and sore it is indeed.

I’m home now, and I feel worse than when I went to the hospital, which I wasn’t prepared for at all. It’s nothing disastrous, just breathlessness even when I’m laying down (except I currently can’t lay flat, so it’s sort of… laying back against 5,000,000 pillows). My lungs feel heavy, but no amount of air can satisfy them. If I stand I get so dizzy that I become spaced out and stupid. Walking makes me pant like I’m sprinting. My abdomen has slowly increased in girth to the point that my tops are so stretched they get pushed up and off of it. My ankles overflow from my socks. My legs are ice cold from about halfway down my shins, my hands are so cold the “capillary refill” is more like a “capillary NOPE” etc. etc. I’m exhausted, and pretty surprised about that to be honest. Even though none of this is new, just… worse than before.

I’m disappointed with how things are right now because my expectations were miles off of this either way. I wasn’t prepared with even the thought of more of this, especially not to this degree. My Brian (ok autocorrect missed up but I rather love this typo. I refer to my brain as Brian anyway) hadn’t even thought of that as a possible thing. I knew it might not work, but I didn’t quite manage to carry that though on to the “I will still feel like poop” part of that realisation. The success rates of the new and more complex one of the procedures (the last resort we were trying to avoid) weren’t that reassuring on paper but people kept telling me I was going to wake up a new person with their hope and optimism. But hope and optimism give you further to fall in order to reach reality. And so I’m disappointed, but… I don’t feel it yet.

To start with in the hospital I was deflated. There were tears (partly due to the drugs, which made me very weepy, partly to do with the fact it was a hospital so my PTSD had a field day, and partly because it hadn’t worked). I just didn’t know what to do, how to be, where to go next in my life, what the point in anything was. That’s a difficult place to be and my body was too exhausted to let my mind stay there. The staff said they were sorry, as if it was there fault my heart is a rebellious idiot. I just laid there and had a brain-to-heart conversation in which I told it exactly what I thought of it. It had even played up during the surgery so that they couldn’t get access to a particular part of it; additionally, my heart taunted them, behaving beautifully until they went to do the second procedure, and then taunting them by being a little poop and immediately refusing to behave in the way they wanted it to. When they tried to remodel one region of my heart (part of the third, new procedure that we hoped we wouldn’t have to do but then decided we kinda had no choice) my heart decided to play a trump card and reveal another anomaly, but when they tried to get near it they realised that they were so close to my phrenic nerve that if they slipped and damaged the nerve I wouldn’t have been able to breathe again, and by that route they kind of had less control of what they were doing, so they had to stop.

So right now I’ve no idea what I’m doing. No idea how to be. Plenty of thought but no emotional response to those thoughts. No idea what to do from this point onwards. Can’t even comprehend the current situation because my brain hasn’t accepted it yet. Don’t know how or where to go from here. My mum keeps telling me to revise and care about the exams I have in two weeks, but I don’t even know where my brain is at, and when it comes back down to earth and the hopelessness I felt when I first realised the surgery hadn’t worked returns… it’s going to be hard to find the motivation to get out of bed. So now, while it’s all surreal and I’m stuck in an emotional void full of thought with no feeling (which really was a smart place for my brain to stick itself – dissociation is a great temporary coping mechanism, and I do it a lot) I am trying to get a life. By that, I mean I am sleeping a lot, trying to beat my body into submission by pushing it to do as much as it can until it rebels to the point that I give in, cuddling a Labrador a lot, sometimes making lecture notes, and eating ice cream (in the words of one person who saw it, my throat has been “cut to ribbons”)

But see, I will get my head around this. At some point the dust will settle. Kicking and screaming, time will drag me through and then back into the boxing ring for the next round. Everything ends – the good, the bad, the amazing and the hopeless. No way but through all of it, even when you want to stay forever, even when you see no way out or never want to go there at all. And that perspective, that important, grounding reality, will return to my brain. So I will leave you with the lyrics from another band whose songs have got me through a lot, whose lyrics I cried to on repeat in a coronary care unit until finally I stopped feeling (many of their songs spring to mind, but this one was written about having hope when there isn’t any so…)

“Falling in this great divide 

The earth it splits, and my feet on both sides

Though my faith is shaky


I keep on hoping (keep on hoping)

Keep on hoping (keep on hoping)

When it all feels broken 

Got to keep your hope alive
Falling in this great divide

The earth it shifts, and I’m on the other side 

And I swear the world is going crazy


But I keep on hoping (keep on hoping)

Keep on hoping (keep on hoping)

When it all feels broken 

Got to keep your hope alive”

X ambassadors, Hoping

And that was the song, right there. That was the song that got me through that night, that initial realisation, the fear (along with Bastille and some Imagine Dragons and other artists whose lyrical art has become an emotional lifeline for me through the hardest things my body and the universe have thrown at me).

Maybe I will start saving for a games console, and I can live as a healthy normal human in a video game.

In order to keep on hoping, I’m going to have to start. That’s something scary and difficult for me to do, because it opens you up to a whole world of let downs and hurting (mostly because reality is a complete boob).

Even if we tried and failed, we can try again. Another anaesthetic. Another gamble. Another chance. And if that doesn’t work, then I’m in a bit of a situation. But maybe at some point before then my brain might decide all is not lost. I just know that in the next couple of days I’m going to feel like the world ended, because it carried on exactly the same as it was. I just don’t understand. I’m right back in the situation I was so desperate to escape from, the situation I’d gladly have died on an operating table just to leave behind.

This is all far tougher emotionally than it is physically. Forget the health hiccups. It’s the emotion they kick up that is killing me.

Advertisements

5 thoughts on “Not What We Expected

  1. Sorry to hear it didn’t go as expected and that you’ve had a rough time with your PTSD and with everything emotionally. As always feel free to message me, I should be home next Friday if you’re free and wanted to meet for a couple of hours?

    Like

  2. Oh, London Blogger Friend. You have no idea how much it cheers me that you are still with us! I have been praying constantly over the past several days.

    But I am so sorry the procedure didn’t go as expected and that you’ll need to go through it again. Yet I’m glad that the option is there to give it another try and hopefully get it right next time.

    As we’ve previously discussed, no one can truly understand what each other is going through when it comes to stuff like this because no two people’s health is identical. But I do know what you mean about feeling deflated and the “I will still feel like poop” problem. I had three surgeries last year, two of which seem to have been successful- I had an MRI Thursday that confirmed my brain tumor is gone and I’m just kind of assuming the stent for my aneurysm is doing its thing, though I won’t know for sure until my angiogram in November. The pelvic pain I was having before my hernia surgery has never gone away, though, even though the hernia was repaired, so I’m slowly accepting the fact that this pain is permanent due to the rewiring of my neurons in response to chronic pain; they act as though there is a painful insult when there is none. This is a pain I’ve had for three years now, but I’m pretty sure it’s with me for good. But in an effort to make myself better through all these procedures, I developed POTS, which has made my life worse than what it was like when I still had the brain tumor. I’m dizzy when I stand up. Walking feels like sprinting and any exertion makes me short of breath. Brushing my teeth increases my heart rate to the 120s or 130s. I’m freezing all the time (I have a space heater in the bedroom.) This is a huge defeat to me; I pretty much spend all day in bed pushing fluids and salt in an attempt to improve my blood volume, but it’s an all-day, every-day task. (Hey, let’s trade- can you give me some of your extra fluid? That way you can be less poofy and I can be less dizzy!😂)

    I know this is a huge blow for you. But I am glad to read of your optimism. Yes, the procedure failed, but you’re right; you CAN try again. And yes, save up for that gaming console! Find things to do that distract you and make you happy. I’ve taken to reading again and can’t seem to get my hands on enough books. But I do it because it’s something I can do in my current state.

    And I’m glad Bastille gets you through, too.🙂

    Like

    • I do not have the with-it-ness to answer most of these points, but it sucks beyond belief that your body seems to be composed of rebels instead of organs and I’m not sure what more to say than that.

      I have quite a few friends with POTS… autonomic nervous systems are highly overrated right? 😂 It kind of sucks that you can relate because it means you feel lousy too. My breathlessness is pretty chronic and likes to occur because my heart lets blood back up in my lungs until I start drowning in my own fluid a little bit and cough up pink froth, so it kind of feels like… drowning really because there isn’t enough room for the air. It’s like someone has filled my lungs with lead and my muscles cannot inflate such a heavy mass. Breathing itself becomes exhausting to do, and laying flat just makes it worse. Sometimes it’s because there just isn’t enough blood being moved (my extremities like to go blue when my heart is in an arrhythmia, and my lower legs and arms are permanently ice cold and pale. If I had more control over when the whole blue thing occurred , I’d call it my party trick 😂). Makes everything a little exhausting right? Sucks that there isn’t much they can do for POTS. They really should do more research into it and stuff, it’s debilitating from what I’ve seen; a few of my friends were just dismissed and told they had it but as it isn’t a life threatening condition the doctors were just going to leave them to “grow out of it” and weren’t concerned. I think that’s very wrong and easy to say when you aren’t the person living with it.

      My resting heart rate is between 120-140 and about 110 laying down so you can imagine the numbers I get when I walk and stuff. I know it is only double normal and that mine is due to my heart being an idiot rather than POTS, but I can appreciate how tiring it gets. Luckily when I sleep my heart rate used to drop to about 80 (in a normal person that’d be 50, but 80 was enough to give my heart a bit of a break) so far it’s new minimum is 98 (it’s clearly very stressed out right now). It beats too fast, tires itself out, and then makes mistakes in how it pumps and starts beating in irregular rhythms. I’m careful about what I share here, I try to avoid specifics so I won’t say any more. POTS is something I just always get so worked up about because I get really frustrated that people just dismiss it. Like… if it causes you to pass out in a dangerous place like by a train track then I class that as a life threatening thing… and when your body doesn’t have fast heart rates for long enough that the sensation becomes normal, I can’t imagine how crap it is to suddenly just feel like poop. People should appreciate that more.

      I’m fluid overloaded but actually dehydrated – it sort of all gets stuck pooling in my tissues and forgets to go back where it belongs because my heart doesn’t have enough oomph to force it back so I’m not really sure how I could collect any to donate to you😂. How about I trade you my almost totally healthy autonomic nervous system for your healthy heart?😂😂😂 That’s all I have to offer (Wait… your solution was better, mine leaves us both feeling lousy. Ignore me. I’m spaced out)

      That optimism doesn’t exist yet, but interpret my words however you feel appropriate because I’m hoping that at some point my brain might actually feel/believe those words. I honestly don’t know how to feel right now. I’m not sure if the surgery is a risk I will want to take again, especially as the second and most problematic area they need to poke about is right by my phrenic nerve, and that makes things a lot more dangerous, to the point that it stopped the surgery this time. The surgery went perfectly from the surgeon’s point of view, my heart just will not play fair and it is that which may cause the same issues again. There’s no guarantee it will work. Hope is stupid but I seem to be already hoping anyway. Hope is blindly kidding myself that what I want to happen is going to happen, and what I want to happen isn’t realistic at all.

      No longer have any idea what I said here because I’m too spaced out to really know.

      But yeah Bastille have got me through a lot. I posted about it somewhere in one of the other links across the top of the page… yknow like “about” and those kind of pages… there’s a page about music that means a lot to me. Should probably add more. Ok I literally am so confused by myself sorry this was so long and weird bye

      Like

    • Only if I win the lottery 😅. I’m not worth all that anyway! It’s fine, I’ll get a grip eventually. For now it’s just difficult being so breathless even at rest and things. I can hardly walk, and don’t have enough energy or breath to eat an entire meal. Right now having a well behaved heart seems like an unachievable dream; but seeing Bastille is enough for me, it cancels everything out. That music tunnels into my soul and just… puts out all the fires. I can’t even explain the calm that comes over me. Sometimes tears. Sometimes pure, overwhelming relief AND WHAT THE TV JUST STARTED PLAYING BASTILLE ON A DOCUMENTARY IT KNOWS!!! I can’t believe people valued me enough to get me that ticket. I don’t deserve it at all. I am stunned and it doesn’t feel real. My friends are trying to get me to write to them and tell them what their music means to me, can you believe that?! 😂😂 I’m not that kind of human 😂😂 seeing them perform is enough of a big deal to make my entire year 🙌🙌 and to make all the recent difficulties… insignificant right now. In case you haven’t guessed, it’s a pretty huge deal right now. Anyway, back to my attempts to revise

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s