Just found out I need heart surgery

It feels like there's a piece of furniture jammed down my throat. My heart is pounding 130 beats per minute, every hour of every day. It's not possible to sleep. I can barely catch my breath. Doctors don't know why it's happening, and don't know how to stop it. Surgery in Vancouver appears to be my main hope now, if I can make it to the top of the waiting list. I want to write about what's happening and how it feels.

I'm skipping the links, the images, the fancy formatting. I just want to type, more or less as it comes to my mind. I think that's something Blurt was meant to do, anyhow.

I ended up having to go to the ER today, after another disastrous night last night. I don't know why evenings and nights are so much worse for my cardiac symptoms. I've been relatively okay in the mornings and afternoons, but once 6pm rolls around, I'm short of breath, and the arrhythmia switches from atrial flutter, to atrial fibrillation.

Quick bit of medial info, atrial flutter is generally seen as less serious, and less debilitating. And that's how I'm experiencing it, too. When I'm in flutter, I have a very fast heart beat, but it's not irregular. How does it feel? Kinda like I just went for a long fast run, then rested for a few minutes. It's beating fast, but not pounding really hard. When I'm in flutter, I've gotten used to it enough that I can fall asleep (if my other sources of sleep problems aren't currently in play).

But atrial fibrillation is more serious. Not immediately deadly, but not something you want to happen often. Both types of arrythmia are nasty. Sadly, I've been having spells of one or the other since mid 2021. Diagnosis has been delayed because of 3 main factors:

1. The Covid plandemic and tyrannical response.
2. An unwanted messy long-distance move in 2022.
3. Terrible luck catching the arrhythmia on a diagnostic test (like an ECG or Holter monitor). Each time I managed to finally get testing, I'd have a completely normal moment. Couldn't catch it. After a while, doctors started to look at me funny, like "are you sure you're having the symptoms you claim?" Earlier this month, I finally managed to get an ECG done while in a serious state of fibrillation.

Things have been moving quickly since the really good confirmation of the fibrillation. I'm being taken very seriously, and told that I "dodged a bullet" by not having serious outcomes after having uncontrolled atrial fib for 2.5 years. One of the main risks is the poor rhythm of your heart causes blood to stagnate and clot, then the clot goes to your brain (a stroke). The other main risk is that too much arrythmia can cause the heart to swell, permanently, leading to failure. So far, I haven't had either of those complications.

At the ER today (I went in around noon), I explained that I'm generally not too bad in the daytime, but things get bad in the evening. I was given IV drugs to try and bring me out of arrythmia, but unfortunately it wasn't successful. That means I'm now in permanent arrhythmia, and it's not likely to go back to a proper rhythm. The last normal beat my heart took was last Monday morning. 10 days of nonstop pounding at 2-3 times the proper pace.

Like I said, feels like a big piece of wood in my throat/chest. Not exactly painful... but not nice. No idea what exactly is causing that sensation, but I'm getting worried about tonight's sleep. I got about 1 or 2 hours last night, then missed my afternoon nap (when my little children go down for naps) because I was at the ER. Now it's looking like another sleepless night. I'm already feeling woozy and out of it... not sure how I'm going to be tomorrow if there's no sleep.

My wife @MediKatie has her own serious health issues right now, and she's in major pain. We're doing our best to keep the house running smoothly, and the children well cared for, but it comes at the cost of sacrificing our own health even further. That's not sustainable. I need to get this problem sorted out. Even if it doesn't get any worse than it is now, which is an unreasonable hope, I can't handle it. It needs to get better, and fast.

Surgery is that potential solution.

There's something called ablation, done by cardiologist specialists in Vancouver. They go in with a probe on a tube, through a hole in your jugular vein, or in your leg. The probe goes through your vessels to the heart, does some looking around, and then zaps specific parts of the heart. This kills off certain electrical pathways, and hopefully, makes things beat much better again.

Apparently there's a 90% success rate, and the surgery itself has become quite streamlined and safe. It's not pleasant, but it's not particularly dangerous. And the potential upsides are huge - I could have my regular heartbeat back! Just the thought of that is amazing. I am going to visualize that happening, and go toward it, and get through this so that I can recover and get back to being a husband and father.

There's a long waitlist. Apparently, heart problems are incredibly common at the moment. My doctor has asked I be considered urgent, and called if there's a cancellation, but it could still be months. When every day, no, every moment is miserable and risky, that's too far away! But what else can I do? Healthcare is free, in Canada... and we get what we pay for. Huge waits. I don't even have a family doctor (general practitioner) because there aren't any available. Can you imagine, being told your life is on the line because of a heart problem, but sorry, there isn't a doctor to be assigned to your case. Yes, I can see an internist (specialist in the internal organs), and I can go to the ER if I'm in really bad shape, but otherwise there's no care available. In Canada, a family doctor is required for so many things, I can't even begin to list them. Without it, you're screwed. And there's none available, leaving millions to scramble for healthcare any way they can get it. I'm lucky to at least be on the ablation waitlist.

My 4 year old son doesn't know anything's wrong. I've been unwell his entire life with my nerve disorder (MS and/or fibromyalgia etc), and since before he was 2 I've had this serious heart problem. He's a clever guy, but we've done our best not to burden him with any of it, and he's blissfully ignorant. My little girl is just turning 2, and she was just a newly-created fetus the last time I was in good cardiac health. We don't see any advantage of telling them at this point.

I'm fit... no blubber here. My arteries are clean as a whistle, my diet impeccable, my nutrient and electrolyte levels perfect. I don't use caffeine, tobacco, alcohol, or hard drugs. I walk regularly, and stay active as much as I'm able (given my chronic pain and fatigue). There's no reason my heart should be doing this, and doctors have told me that to my face. Much like with my 8-year-old nerve problem, they don't understand, they don't have any theories, and they don't seem interested in investigating it. There's no profit for them in finding the cause, just in diagnosis and treatment. I did 10 years of nursing in this healthcare system, I know how things work.

My wife's the only other adult I know in this town, and it's really hard to meet people when you're unwell. I can barely make it to the grocery store lately, not that it's even possible to make a friend there. I don't use smartphone apps, and don't go to a workplace, and don't have a network of family or friends here. I'm pretty isolated. Katie is amazing, she listens when I need to talk. But she can't be my everything. I can't ask her to take care of my emotional health as well as helping take care of my physical health, especially when she's got major health issues of her own right now.

I've talked here before about my heart problems, when it was assumed they could be myocarditis. That has now been all-but ruled out, which is good. So it's "just" the arrythmias and the associated heart failure (congestion, shortness of breath, leg swelling, etc). From what I've been told, if the ablation fixes the arrythmia, the heart failure will fade away. It's one of the only ways to be "cured" of heart failure - to fix an arrythmia that is causing it. In other words, there's still hope that I can make a near-full recovery. I just have to survive to the surgery, whenever that is going to be.

Surviving until then isn't going to be easy - there's no guarantee I'm going to last that long. When I'm able, I will be seeing a lawyer about upgrading my will. I have been thinking about other stuff, too, like reaching out to people I have unfinished business with. I don't want to be grim, like "hey, I might not make it, let's talk about stuff"... but I'm not really sure how else to go about it. We'll see. First, I need to stabilize a little, see if I can get any sleep, because otherwise not much else is going to matter.

If I can't sleep, it'll be back to the ER. This time, they won't try converting to regular sinus rhythm with drugs, they'll go straight to the defibrillator. Yes, they will shock my heart off and then back on again. It has to be done at exactly the right moment, or you send the heart into ventricular fib, which is extremely dangerous. So it's not all that safe, and it's not all that fun (leaves a big burn mark on your chest), but it can bring you back to normal rhythm, at least for a while. If I do that, and if it works, I'll have a better chance at making it to the top of the surgery waitlist.

So I feel somewhat supported, knowing I can go to the ER. Having been a couple times now, I know roughly what to expect. And yes, they strap a mask on your face when you walk in the entrance, no exceptions. I'm there in part because I'm not able to get enough oxygen... so they put a breathing barrier on me. How smart is that? It's hard to trust people that do things like that, but what choice is there? It's not a nice feeling, having to trust people with your safety and health, when you know they aren't actually trustworthy. Ugh. Like I don't have enough sources of stress already? But like I said, knowing there's a hospital (small but decent) nearby, with good staff that have proved they can handle what's going on for me, helps a bit. I don't like going there, but I don't like croaking on my livingroom floor, either. I will go if I need to, that's what it's there for.

I'm pleased the whole "maybe it's anxiety?" thing has been dropped. I've been through 8 years of that, now (and won't get into it too much right now). It has been beyond frustrating to have it insinuated that "it's all in your head". I even had a doctor (my last family doctor, several years ago down in Vancouver) tell me that she thinks I'm a hypochondriac (someone who always thinks they're sick, that they have every disease known to man, and can't accept that they're actually healthy). Such a label follows a patient from that point, and does massive damage to their ability to get care. EVERYTHING is chalked up to that, once it's mentioned. It's basically a way to stop giving someone healthcare services, without the patient being able to do anything about it. If they protest, and insist they're sick and in need of diagnosis/treatment? That's their hypochondriasis talking! Send them away! (See how easy it is?)

Ugh... I went through it for years. Hard to summarize the immense loss of time, finances, and health I endured because of that. I knew all along that my nerve and heart issues were real, and now that I've finally got validation, I find myself sad and angry that I was shoved aside for so long. My outcome would be undoubtably much better, had I been properly diagnosed back in 2016 when this all began. Incredible that in Canada, in the 21st century, we still can't provide citizens with even the most basic of care. I have worked nonstop for 8 years for this diagnosis, and I only got it once my health had fallen completely apart, and I'm close to death.

Regarding typing this up on the blockchain. I like it because it becomes a permanent record of my situation right now. That's also why I DON'T like it. I'm a private guy. I don't even let doctors send me health info (like lab results) over the internet. Paper only. And yet here I am, spilling detailed health info online, on platforms that can never be deleted by anyone. And there's not even really any advantage to it. I won't make more than a dollar for it, I'm not likely to reach anyone that can give me expert advice or help, it won't even be seen by many people that know me. It's up there for my stalkers, my ex, the government, and any other enemies I might have accumulated during my 47 years. But it DOES feel nice to lay it all out there, kind of cathartic, a bit of a release.

So, tonight I'm going to try to sleep a few hours. If my muscle twitching takes the night off, and my intense nerve itching doesn't flare up, and my heart doesn't pound so hard the bed shakes, and my nerve/joint pain is bearable, and my leg restlessness and agitation don't go wild, I should get a short nap. I need it so bad. If I don't sleep, I'm going to get sicker, and then I'll have even more trouble getting healing rest.

I've had difficulties creating much content lately. I'm probably going to continue to be somewhat quiet, simply out of necessity. I don't have the time, or the energy, or the concentration, to make proper videos and articles. I feel glad I managed to push through the end of 2023 and reach my 1,000,000 BP goal, but now I'm going to have to slow my pace considerably.

My hope is the waitlist goes quickly, I get called for a phone consult, it goes well and I'm a good candidate, I get an appointment, I find a way to get down to Vancouver, I get the surgery, it goes well, the arrythmia is gone, the heart failure resolves, and I'm able to get out into my garden in April! Not an unreasonable goal, I think.

Take care of your health. If you don't know what that entails, learn. I did everything I could for my health, and it still wasn't enough. Give yourself the best chance possible, maintain your good health while you have it, because trying to get it back once it's gone is extremely hard.

I'll do my best to keep you updated. Thanks for reading.

DRutter