Blindsided By My Own Heart

There was a post I wanted to write in place of the words you are about to read, and I’m not sure how to introduce what goes in its place. I’m also not sure how to word what goes in its place either. But… Here’s an attempt to do exactly that.

I was up and out by 9:10 this morning, making my way to the tube station to travel to my hospital appointment. As I walked into the hospital there was a huge Christmas tree, and that took a little sting out of the tail of where I was. It was just a trip to the device clinic – no doctors, just to see what my heart had been up to and check to see if Reginald (the little device in my chest) is all ok. Usually takes just a few minutes, they download all the stuff from Reginald, we see that he’s had a rather unremarkable time and not been activated, and then I get to leave. Usually. So that’s what I expected.

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You can’t really see the sparkles in the trees all around the fountain but hey. 

But I was blindsided by my own heart. I sat down in the chair in the clinic room and we had a look at whether or not Reginald had been freaked out enough to be activated. And then he sort of sat back in his chair and looked at me, and asked me how I’d felt on a certain day at a certain time. I looked at the screen, and the ECG trace he was looking at had been flagged a different colour. I didn’t lie, I admitted weird stuff has been going on. I’ve been telling this blog that my heart feels weird and stuff for just over a month, but honestly I’ve been a bit distracted by other things trying to kill me.

He asked me about other dates within the last couple of weeks. He asked me whether I’d been doing anything special or out of the ordinary on some other recent date, and said that my heart rate had been 179bpm for two hours. I was hearing all this, and I’d been symptomatic and stuff, but honestly it was hard to comprehend that it was my heart.

My heart has been feeling weird, I’ve been getting a lot of palpitations and stuff, but I’ve also been getting a lot of general symptoms that I put down to other stuff because that’s what happens when health hiccups hiccup together. So I didn’t deal with it. I should have. Totally should have. Because then he looked up at me and looked a little in disbelief and said,

“Well there are eleven incidences of tachycardia” Ok, that’s feeble. I am clearly the most pathetic human ever because it’s a fast but regular rhythm and I’ve been feeling dizzy and getting chest pain and ascites and oedema and clearly I’m just imagining it all… But he wasn’t done.

“And 179 incidences of arrhythmia.” 179. Well that would do it. Erm… What? How? Excuse me, are you sure that’s my heart? Go home Reginald, you’re drunk. 

He brought up my heart tracings on a screen, printed a few off that showed squiggles and peaks and fluctuations between the peaks of my ECG where there shouldn’t be any, and stupidly fast heart rates, and some tracings where the bottom half of my heart and the top half of my heart decided to beat at totally different rates. Skippy (my heart) had gone rogue. He looked a little uneasy and told me he needed to go and get one of his colleagues. When he came back he was visibly concerned and when I said I’d just decided it was nothing, he told me it was definitely not normal, and that he needed to go and get a doctor. All I could think was ok, so let my cardiologist deal with it when I can next face going to an appointment. But he said it couldn’t wait until my next appointment. So he phoned the registrar who was in clinic, and then they went and had a conversation, and this doctor walked into the room a while later and shook my hand and before he even sat down he asked me how I’d felt yesterday.

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Yesterday night

The above picture is of my yesterday. Throughout the entire thing, even as we got on the underground, I said my heart felt weird. It hurt, right round into my shoulder and arm. It just felt weird, and I was dizzy and my abdomen was more swollen than it has probably ever been. And I couldn’t work out why. I coughed a lot and felt water at the back of my throat. It was hard to breathe, no matter how deeply I breathed in, my lungs felt like they couldn’t expand fully. And I ignored it all. But it all made sense when the doctor said the next thing.

Your heart was beating in an abnormal rhythm yesterday for about six hours. Probably longer, actually. I mean… I had suspected but then totally dismissed this (assuming instead that I was being melodramatic and needed to get a grip)… What. Seriously? Skippy dude… No. And then he glanced at the data from Reginald’s freak out and said, “Oh actually, it started right in the early hours and went on until very late at night.” He looked at the cardiac technician guy or whatever his job title is, and asked about another time, the response was that I’d just been flicking in and out of arrhythmia. And it all made sense then. The fact that yesterday during the day I was SO tired and was struggling to stay awake. The fluid retention because my kidneys were annoyed at my heart being in an arrhythmia so frequently I guess. All of it.

The doctor sat down and looked at me. And I couldn’t really feel anything, the reality didn’t hit, but I looked right back at him. He looked like he was about to say something super bad, but he wasn’t. He told me about what my heart had been doing, and his colleague explained the tracings to me. When held up against my baseline they were kind of chaotic and way more weirdly shaped in ways it never had been before. New heart junk. Merry Christmas body, love from reality. 

He told me it wasn’t normal and we couldn’t just leave it. And then he started dancing around the topic of a treatment, saying that he needed to urgently email my consultant and work out a treatment plan which will also be put into writing. And he danced around the subject until eventually I gave him a shove and he stopped avoiding and started talking… about surgery – the stuff I talked about with my cardiologist a few months ago, but that we decided to hang fire on after my heart improved a bit over the summer. With the medication I take, my heart apparently shouldn’t have done any of the things we sat looking at on the tracings. I mean… It shouldn’t have done them anyway, but apparently it can suggest other stuff is going on so who knows. He didn’t. I don’t.

I was kind of stunned but not really stunned, because there was no emotional reaction or real thought other than, was that really my heart? and clearly it must have been. There’s no way I can wriggle out of this one, Skippy has betrayed me and it’s printed in black and white now so I can’t try and y’know… Mask it. I was totally calm throughout the entire hour long commotion. I sat there on my phone reading blog posts and writing stuff and I talked to them about stuff that didn’t matter. I was completely unable to react to the situation. At all. But I kind of thought it might be important to think or feel about it, so I tried to.

And then I did the only thing there was to do – I stepped out into the world, I bought myself a footlong sub in Subway and a load of food in Pret (and my bank account probably cried about this as I got back on the tube) and headed to campus to attempt to complete the coursework I had that was due in by 5:30. Normal life carried on. I went to my lab at 2pm. I sat surrounded by people, one of whom was very happy which made me just shut down. I sat looking at information, and got complimented by one of the assessors on today’s Christmas jumper.

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I haven’t been able to wear this since I almost died while wearing it last December, but it was the only Christmas jumper I was wiling to let smell of hospitals. Yes I have a padlock on my belt loop – I finally acquired one in the lab because we need them for lockers.

But my brain was still in that clinic room. It was still there, refusing to leave until it figured out how to react, figured out how to even have a thought. And everything else was completely overwhelming. I wanted to cry, but not from sadness, not from weakness, I don’t even know why – just suddenly I realised that I was holding in tears. From nowhere. Another thing that just appeared with no warning. And I had to act normal, I had to be this version of myself that healthy people can handle. They moaned about trivial things and I sat there trying to even comprehend what even had gone on.

Two new things requiring surgery in as many weeks, both pretty big deals… And I knew the university didn’t care. The one thought that managed to temporarily surface was the realisation that university CANNOT find out about either thing, because if they know I have to have surgeries, I’ll have to drop out (or at least last year when they heard I had a surgery planned it was a bullet in the gun they kept firing at me in order to kill my attempt at uni that year and make me take a year out). I spoke to my mum right after my appointment, and we were both calm and I managed not to be a dick. She said it was scary, because I told her everything I’d been told (the stuff I’ve shared here is all I’m willing to share with anyone, so please don’t ask for more detail because I need to figure out where it all sits in my brain first).

After the lab I sat alone and finished my coursework (and somehow submitted it on time), and then Uni Pal decided I needed a distraction and that we should go in search of ALL the Christmas things… We ended up heading to Whitechapel and eating fish and chips (proper fish and chips) in a greasy fish and chip shop where we sat for over an hour on plastic chairs. I showed her a lot of the photos that I have of my dog and I, and she said she wished anyone or anything would love her as much as that dog loves me – apparently she hadn’t seen a dog behave like mine and it made her heart melt. I wanted my dog then. And then we talked more. And we walked to a supermarket and Uni Pal hugged a giant Christmas tree and I almost bought a miniature one… And each time my heart hiccuped I now knew it wasn’t me being an idiot, but Skippy having a tantrum.

Health hiccups don’t care about Christmas. They don’t give you a Christmas holiday. But apparently, mine are now offering new gifts in the spirit of the festive season.

I’d like the world to back off just so my brain can switch back on and deal with reality.

Apologies that this post was the word equivalent of a skid mark. I can’t even even right now.

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9 thoughts on “Blindsided By My Own Heart

  1. Oh, my dear London Blogger Friend (is that ok for a pseudonym?) Now I really want to get on a plane and fly to London just to give you all the hugs. I’m so sorry Skippy has dealt you this blow. I can only imagine what you’re feeling right now. Heart stuff is just plain frightening. It’s most of what we see in our peds ICU, and the pharmacy satellite where I work is located on the peds cardiac step down unit, so I’m pretty familiar with heart stuff and I know what a big deal it is. You name it, I’ve seen it. I don’t know exactly what your initial diagnosis was that prompted you needing Reginald (please don’t feel you need to tell me), but I can imagine it was scary.
    I feel guilty. When you started talking about your edema and having to wait for help to carry your groceries and such, I was worried there was something wrong with your heart. I didn’t know at the time you had Reginald and that Skippy had already made a name for itself through its abysmal misbehavior. I wanted to say something, but I just…I’m sorry, I didn’t feel it was my place. I didn’t want to upset you or be “that” person who doesn’t even know you and your whole situation and tries to tell you what to do. Perhaps I should have said something, and if it would have helped, I’m sorry I didn’t.
    I know what it’s like to be blown over by medical information. You receive what they’re saying, and you nod and make eye contact and say ok and uh-huh, but you don’t really hear what they’re saying because your brain completely shut down as soon as they dropped the bombshell. It definitely takes awhile for your brain to switch back on and understand the whole situation. When I found out that my pre-op imaging prior to my brain surgery had revealed an aneurysm on my carotid artery and that now my surgery would possibly be canceled due to the risk of rupturing the aneurysm during surgery and giving me a stroke, I basically cried for four days until my neurosurgeon consulted with a neurovascular surgeon and they decided it was ok to go ahead with the surgery. But I was still scared as anything before that surgery.
    Please, please, do what’s best for you, whatever you determine that to be. This whole situation totally sucks and is scary as hell, but if anyone has the strength to persevere and get through it, it’s you, my friend. If you ever need anything, I’m here, even though I’m several thousand miles away.
    PS- I also name my medical maladies. My brain tumor was Mini, my aneurysm was Uva, and the four ovarian cysts I had a year ago were Eenie, Meenie, Mynie, and Moe. I haven’t decided on a name for my stent, though…
    PPS- Again, I love your Christmas jumper.
    PPPS- You’re amazing.

    Liked by 1 person

    • I mean… The thing is I’m not frightened or blown over (yet) because of my current unhealthy inability to feel much or think or… Attach any level of importance to anything, especially not in quantities that might warrant caring about it. But it’ll happen. And subconsciously I clearly had a brief flicker of reaction when I almost burst into tears.

      The thing is, all the symptoms I had could so easily have been due to anything else. My kidneys cause oedema too, and they are still a little confused about how exactly to function at the moment. The fatigue could also have been due to other health issues which have been hiccupping lately and therefore I swept this symptom over to them. Palpitations happen, they don’t bother me much, because usually they are nothing. To now know that the very frequent palpitations I’ve been having lately are not nothing is… Well I don’t even know because I think I’m supposed to insert and emotion right about here.

      I heard every word of what that doctor said, I discussed it with him, I questioned him. He was being very careful about how he worded things because I think he expected me to be overwhelmed or shocked… I should have been both of those things. But I wasn’t. Eventually I cut through his over-niceness and made him just come out with whatever it was he was dancing around. He couldn’t confirm that the treatment plan definitely will be surgery, but he was pretty sure that my cardiologist will have to poke around my heart again.

      If strong is something I ever was, then I’m not now. People see who I was, and people see me carrying on, and they assume it means I possess a great deal of strength. I may at one point have, but it came from denial. I am broken at the minute. I am slowly beginning t function, and therefore people assume that I’m not. This isn’t me being optimistic, this is me being realistic. I have absolutely nothing left. I am not going to “face” anything or deal with anything or cope, because I can’t feel anything to try to cope with. That doesn’t stop life taking things from me, and it doesn’t stop time dragging me through. Yeah ok so I can’t write any more. These words aren’t saying what I want them to and my brain is swiftly emptying so guess it’s reacting to something I have no idea about.

      But persevere. Not something I have the ability to do right now. I’m not actively doing or wanting anything constructive. There isn’t any anything. Yeah.

      Like

      • Ok, I think I hear what you’re saying now. Forgive me if I interpreted things a bit wrong and kind of got too pep-talky for where you are right now.
        I think you might be able to relate to this blog post of mine. I wrote it in September a few weeks after my brain surgery. My husband had commented on how strong I was and I just couldn’t understand what he meant; as far as I was concerned, I was the furthest thing from strong there was. And I still don’t feel like a strong person; I’m still adjusting to the “new me” so to speak, dealing with the fact that I may never be better than I am right now. Here’s the link: https://ribbonrx.com/2016/09/27/nocturnal-musings-15-the-meaning-of-strength/
        I think we just look strong to others because they’re not going through what we are. They don’t realize that when you get sick, like chronically sick, you just have to keep moving forward because there’s nothing else to do about it. You just keep living life because you have to. And it doesn’t feel strong to us because we’re just dealing with it and doing what we have to do to keep existing. But I guess that’s what strength looks like to others. And I get it from their perspective, because I used to be healthy until a few years ago. But now that I’m on the other side of things, I don’t see strength the same way, I guess. I just see a daily life that I hate living.
        So…here’s to our “strength,” I guess?

        Like

    • Ok, have slightly regained the ability to human.

      That’s a good pseudonym, yeah.

      Don’t feel guilty at all. I had the medical and biological knowledge to know for myself, and you’d kind of think that I’d recognise it… It wouldn’t have helped. I kinda knew for the last couple of days that my heart may be a little bit grumpy, but even if my brain had been able to care about anything, I wouldn’t have done anything about it.

      PS – I like those names
      PPS – Thank you, my friends are amused that every day I appear in a different Christmas jumper. I think I may have worn them all now
      PPPS – I’m really not, but you are.

      Like

      • Not in hospital
        Nowhere near alright
        Don’t know how to words and really don’t want to right now. The post I just made is nonsense and nobody will appreciate just what it means, but it’s all I can offer. Excuse me for a while. I’m alive but dead inside

        Like

  2. Dear Skippy,
    Look, we had a deal. You beat, about 80 times a minute, and in return the rest of the body will provide you with nutrition and oxygen. Also, take you on field trips to fun and interesting places that aren’t hospitals.
    When you start throwing tantrums, which is why Reginald is in charge of supervising you by the way, you are really just hurting yourself. And if you continue, a cardiologist is going to come poking around and ablate parts of you that you’ve become quite fond of.
    In conclusion, rein in those aberrant nodes, stop throwing tantrums, and appreciate museums that are dedicated to your fabulous form and function.
    Sincerely,
    Literally everyone

    Liked by 3 people

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