Caution is warranted

When I said a mere 10 days ago that “this health journey has certainly not been straightforward,” that wasn’t an understatement: Things are, in some ways, less settled now than they were even then. Right now, “moving forward” means using caution.

A week ago tomorrow, I began the new plan that my doctor and I were moving to, which meant I’d take one 60mg tablet of Diltiazem twice daily, something I described in detail in that post 10 days ago. Since then, problems have popped up that may or may not be significant.

I couldn’t sleep Sunday night. At the time, it seemed like my mind wouldn't stop racing, and that was making me feel amped, like I’d had too much coffee (I hadn’t; I never drink coffee, decaf or otherwise, at night). After about an hour and a half or so of lying there awake, I turned on my light and played with my phone for a bit in an effort to get my mind to quiet down. When I turned the light out a half hour or so later, I dozed on and off, but the feeling never went away entirely. Monday, of course, was a washout, though I felt fine. I also slept well-enough Monday night.

Tuesday evening, I had my pill, and within an hour I felt extremely anxious. I took my blood pressure, which was basically normal for me. I decided to go to bed. First I used the KardiaMobile device I talked about the other day. The first result said “Possible AFib”, so I lay down, rested, and took it again. This time it said “Unclassified”, a reading I’ve been getting from time to time since April (before that, it was always “Normal”).

The first thing to be said about this is the obvious and rational thing: I’m well aware that, at best, these readings are indicative only. The descriptions the App puts on ECG readings are determined by AI, not real humans, and so, they have a huge possibility of being incorrect. I’ve known that all along, but it didn’t matter in the moment because this was exactly the thing I was terrified would happen: I’d have some sort of tachycardia or AFib event without Nigel there to help me work through what was happening and, if necessary, to drive me to get help. At one point, I was afraid I was going to die, and I considered calling an ambulance.

My rational mind regained control, and I realised I was panicking, not looking at the available evidence. The ECG reading aside, my vitals were normal: My blood pressure was okay, but, more importantly, my heart rate at the time was a completely normal resting rate (for me), and that meant it was highly improbable that it was either AFib or tachycardia. I calmed down and went to sleep.

The next morning, Wednesday, I woke up and felt fine. I started my day, fed myself and the dogs, then took my morning pills. As I was sitting playing my morning round of “Words With Friends” on my iPad, I again started to feel anxious and unwell. I took another ECG reading and it said “Unclassified” again. I lay down and slept for a bit, and when I woke up I took it again, and it was classified as “Possible Afib”.

I rang my sister in law about something else, and talked to her about what was going on (she’s a nurse), and that helped me formulate a plan.

Since I wasn’t in any pain, didn’t have shortness of breath or anything, I said that I didn’t feel I was in any immediate danger. So, based on what my sister in law and I discussed, I made an appointment with the cardiologist I saw privately back on October. I’m still waiting for a follow-up with the cardiology department at Waikato Hospital, and it’s likely I’ll be waiting for quite some time yet. Even so, the earliest I could get a private appointment was August 31. There's more to all that, too.

In mid-May, the Waikato DHB (District Health Board) was hit with a ransomware attack, which meant there were no computer resources available until some started to be restored over the past week. The worst part of that is that radiation therapy for cancer patients was unavailable, and they had to be sent to other parts of the country (there was also a plan to send them to Australia, but that turned out not to be necessary; those services have now been restored). But this meant that all outpatient appointments were cancelled, and no appointments for new ones were issued, so there is likely to be a backlog of many, many weeks. That most likely includes my cardiology follow-up, which is another of my motivations for getting a private appointment: Ten and a half weeks is likely to be faster than waiting for the public system (I also think that at least part of the reason it’ll take so long to see the cardiologist privately is precisely because people couldn’t be seen in the public system).

I made an appointment to see my doctor yesterday, so Wednesday afternoon I quickly went out to get my blood drawn for my routine tests (important information for the doctors). I also sent a copy of the ECG reports to my doctor and the cardiologist. My doctor sent me a message saying, “Your ECG readings look like sinus rhythm with extrabeats (ectopics) rather than AF”. Sinus rhythm is normal, and ectopic heartbeats are extra or skipped heartbeats in otherwise normal rhythm. There may or may not be a cause, but it’s usually not life-threatening (unless, possibly, it’s associated with some other condition).

The problem here is that I have a history of heart rhythm problems, and it’ll be necessary to find out if it’s that or just ectopics. To do that, my doctor is asking the cardiologist to arrange a special monitor that records my heart rhythm for a week, apparently recording whenever I push a button so it can get a reading whenever I feel unwell, and during the actual event.

In the meantime, I’m continuing on with my medication as I described ten days ago, but I decided to do a couple extra things, too: I’m avoiding alcohol, which can aggravate AFib as well as cause ectopic heartbeats, and I’m also severely limiting caffeine (there’s no conclusive evidence that it affects AFib, but it has been linked to ectopics).

If I do all that, and otherwise look after myself as I’ve been doing (like taking my prescriptions on time and not missing doses), it may be enough to stop this. Or, maybe not. If it doesn’t the monitor might show what’s going on, or, at least, determine if it’s just ectopics rather than a bigger rhythm problem—or maybe a different, non-heart problem.

Aside from all this, but related to it, is that the results of my blood tests were all good. My cholesterol is the best it’s been in ten years of monitoring (which I know because I have a spreadsheet of all the results over the past ten years—of course). My iron levels, liver function, kidney function—all are good. What I was particularly glad to see is that the thyroid level that had been high while I was on the potentially dangerous drug amiodarone had returned to normal (I was taken off the drug after my procedure last December).

All of which means this health journey isn’t over yet. My desire to feel less tired all the time will be unfulfilled for now, because until we know more about what’s going on, keeping my heart rate slowed is prudent. Changing my anticoagulant/blood thinner will be deferred even longer. I’m okay with all that, though, because I want to find out what’s happening first.

Ten days ago, I said that I didn’t know “how likely it is that this attempt could end in a setback.” Technically, this isn’t a set-back as such, it’s more like slowing things down a bit.

And, as always, I still hope for the best.

Important note: This is about my own personal health journey. My experiences are my own, and shouldn’t be taken as indicative for anyone else. Similarly, other people may have completely different reactions to the same medications I take—better or worse. I share my experiences because others may have the same or similar experiences, and I want them to know that they’re not alone. But, as always, discuss your situation and how you’re feeling openly, honestly, and clearly with your own doctor, and always feel free to seek a second opinion from another doctor.