Saturday, August 07, 2021

Necessary delay

If there’s been one consistent theme in my health journey over the past few years, it’s been that I want to feel better, less tired. Nigel’s death added new anxieties over facing changes alone, but the underlying goal hasn’t changed. Even so, I decided that slowing things down a little is a really good idea.

I’ve talked a few times about the anti-coagulant the cardiologist wanted to put me on, rivaroxaban, and how I was frightened about it because of the risk of severe bleeding. However, I also said last month:
I was willing to give it a go anyway, though, because I’ve had enough of the side effects of dabigatran, but especially because of the fact that I’m far more frightened about having a stroke, and that outweighs everything else, even the fear that this drug may go too far in thinning my blood.
A couple weeks ago I started taking the rivaroxaban, and, so far, the unpleasant side effects of dabigatran seem to be gone. I say “seem” because I’m naturally sceptical it’ll last, or that new side effects won’t emerge. The worst side effects of dabigatran didn’t appear for maybe a few weeks. So, early days, but promising.

I thought I’d make the switch to the other drugs a week later—this week—but I decided to delay it. It was again potential side effects I was concerned about.

My new blood pressure medication (because my current one is being discontinued) is an ACE inhibitor called enalapril. I read the details on Wikipedia first, as is my custom, because it gives me basic information quickly. After that, I always look up the “Consumer Medicine Information” (CMI) sheet from the NZ Government agency, Medsafe. There’s actually not necessarily any significant differences in the details provided by the two sites most of the time. In this case, though, Medsafe’s CMI [the PDF is available on their site] included this:
Be careful when drinking alcohol while you are taking this medicine. If you drink alcohol, dizziness and light-headedness may be worse. [bold type in the original]
This caught my attention because I’d already read up on the other drug the cardiologist put me on, a diuretic called bendroflumethiazide. Wikiepdia said:
Bendroflumethiazide is known to have an adverse interaction with alcohol. It is advised that those using this diuretic should abstain from alcohol consumption during use, as it is possible to experience a sudden drop in blood pressure, especially if standing up…
I note that Wikipedia editors pointed out there was no citation given for whoever “advised” that, so I my next stop was the Medsafe’s CMI [the PDF is available on their site], which said this:
Do not drink large amounts of alcohol. Use of ARROW-BENDROFLUAZIDE with alcohol will increase your chances of getting dehydrated and a hangover.
Neither the cardiologist nor the chemist warned me about that, and if I hadn’t read it myself, I might have gotten myself into trouble. The problem here is apparently two-fold: Alcohol may cause a drop in blood pressure which may cause dizziness (Medsafe CMI for enalapril), and that seems to be what the Wikipedia page was talking about when they talked about bendroflumethiazide. The Medsafe CMI on that drug only really talks about possible bad hangovers if one consumes “large amounts of alcohol”.

The larger point here isn’t about alcohol—I totally abstained from alcohol for the entire 19 months I was on amiodarone, after all, so I can obviously abstain now, too. Instead, what concerns me is that I had to research risks myself. Time was, CMI sheets were given whenever I got a new prescription for the first time, but that hasn’t happened in a very long time—years, probably.

The reason I delayed starting the new drugs had absolutely nothing to do with alcohol (although, coincidentally, I bought a bottle of wine the same day I filled the prescriptions; I didn't know any better yet). Instead, it was one possible side effect in particular: Fatigue.

I’ve been complaining about sometimes profound fatigue for some four years now, and as extremely unpleasant as that’s been, I at least know, more or less, how to manage it, how to pace myself, and how to ration my energy to get stuff done. The new drugs may—and hopefully will!—make me feel much better, however, they may not. I have so much more physical work to do in the garage right now that I just can’t risk feeling even more tired than I already do. Next week I hope I’ll have made enough progress that if I stall, at least I won’t have stuff literally everywhere in my house.

One other potential side effect could also halt my garage work: Bendroflumethiazide can possibly cause gout attacks. They’re not pleasant at any time, but it would make me physically unable to work on the garage, even if I felt more energetic.

The rest of the common potential side effects are pretty standard for hypertension medication (like the warning to stand up slowly), the possibility of a dry cough, that sort of thing. My sister-in-law, who is a nurse, warned me to make sure I drink plenty of water while I’m on bendroflumethiazide, another thing no doctor or chemist warned me about.

All of this has made me think about the future—a lot. When I see the cardiologist I’m going to ask him if there’s a path forward that could reduce the number of drugs I’m on. I’m particularly unhappy about being on two drugs for hypertension, especially the diuretic. If there is a way, I’d like the cardiologist to suggest a roadmap for my GP to monitor (I don’t even know what his target for my blood pressure is). Basically, if there are some changes or whatever that I can do now, I want to do that because the longer this goes on, the more likely ageing and mobility issues could make things worse. I don’t like feeling that all of this is out of my control, at least, not when no one has said to me that that’s the case.

Apparently, the theme of this journey is changing. Sure, I still want to feel better and less tired, but now I also want more control. That, I think, is part of my my other journey, the one out of grief, because I find that more and more I want to determine for myself how my life proceeds and what my future holds. In a way, they’re both about my health. And that’s the biggest reason why I decided to slow things down a little: It’s my life, my choices and decisions, and on my timeline. That, too, is healthy, in my opinion.

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.


Roger Owen Green said...

At some level, I think that conflicting (and sometimes deliberately false) info about all things medical, plus the lack of medical care for too many, has made the medical information landscape feel like the Wild West.

Arthur Schenck said...

Exactly. I'm particularly annoyed by the poor quality of communication/information because it's vital for informed consent to be a reality.