Trying again

This health journey has certainly not been straightforward. There have been many changes to the prescriptions they gave me, including dosage of some drugs as well as changing others completely. There have also been a couple procedures along the way. Not all of the changes went exactly as planned or smoothly. Like now. Still, the overall trend is still moving forward.

I saw my doctor the end of May, as I do every six months, in order to renew my prescriptions. I again talked with him about how tired I feel all the time, and I added that I know that it could be months before I get an appointment with the cardiologists to review my prescriptions, and two of them I’m particularly anxious to get rid of. We’re working to change one.

The drug I can’t change at the moment is Dabigatran, a “powerful anticoagulant” doctors put me on when I was hospitalised back in September 2018. It has very unpleasant side effects, so when the cardiologist I saw back in October 2019 told me that they’d look to putting me on a milder drug after my ablation procedure, I was thrilled.

I mentioned all this to my doctor, who didn’t know what that “milder drug” might be (and neither do I). It turns out that dabigatran causes significantly less severe bleeding than the other two approved/fully-funded drugs. The first of those is Rivaroxaban, a drug I was prescribed back in October by the cardiologist I saw privately, but I never started it because the risk of severe bleeding frightened me too much. The other drug is Warfarin, which is usually prescribed for elderly patients (because it’s more easily “reversed” in the event of a severe bleed).

I’ve read some research that seems to show that low-dose aspirin isn’t appropriate for people with atrial fibrillation, but obviously they can’t be far enough down the research path yet to know if that includes people like me, whose afib has been treated with ablation. Which means I have no idea whether that’s an option or not.

All of that means that we really do need to wait until I see the cardiologist, since they’re specialists in the field. I may be somewhat less resistant to taking Rivaroxaban now than I was last year, because at the time I was very uneasy about going through any drug changes alone. I still am, actually.

So, one of the two drugs will have to remain as it is for now.

The other drug is Diltiazem, a drug used to slow my heart rate, and so, to keep me out of tachycardia and afib. I started taking the drug back in July 2018 when the first cardiologist I saw privately put me on it as an alternative to beta blockers, a class of drugs my body can’t tolerate (at all). The hope was that Diltiazem wouldn’t make me as tired as the beta blockers did, however, it only helped a little. Worse, though, a few months later I was back in hospital with tachycardia, and the doctors rejigged all my prescriptions, including the dosage of Diltiazem.

Despite changes, I’ve remained on Diltiazem all along, and I’ve become convinced that it’s the drug most likely to be the one making me feel tired—even exhausted—all the time. My doctor agrees with me.

The dose I’m currently on—120mg per day—is in a sustained-release capsule. My doctor was going to have me take one 30mg tablet twice a day (because they’re not sustained release), however, they don’t make that dosage any more, and 60mg is now the lowest dosage. So, for now, I’ll take one 60mg tablet twice a day (same dosage as now). Then, the doctor wants me to eliminate one tablet, when I feel ready, with an eye toward eventually stopping it altogether. When I picked up the prescription for the 60mg tablets, I asked the pharmacist if I could cut a tablet in half, and he said I could. I think I’d feel more comfortable dropping the dosage a little more slowly, so I’ll ask my doctor if the next step could be half of a 60mg tablet (30mg) twice a day, then eliminate one of those. It’s just I’ve been on the drug for nearly three years, and I’m a little leery of making a change too abruptly. At the moment, though, I’ll start the two tablets per day routine as soon as I finish all the remaining 120mg capsules, which will be the end of the week or so.

I feel good about the change I can make because I think it’ll help—and fervently hope it will change my life. If that sounds like I’m setting myself up for disappointment, the reality is that I always hope for the best possible outcome, but I don’t necessarily expect it. In this case, I just want to feel better, and if I feel even slightly better as a result, that’ll be a major improvement, and good enough—for now.

I made one other related change: I switched the chemist I go to, changing to a location of the same NZ-owned chain that’s closer to my house. Originally, I went to the chemist close to my doctor so that I could get my prescription and go fill it. However, it’s a 15-25 minute drive from home, depending on traffic, and I go every month to pick up the repeats (because I don’t want to have to destroy lots of drugs if my prescriptions are eventually changed; normally I’d get three months at once). The chemist I used to go to wasn’t just farther from my house, it also wasn’t open as much: They closed fairly early on Saturdays, and all day on Sundays and all public holidays. The one I’m going to now is maybe a 5-10 minute drive, and because it’s in Te Awa (the mall at The Base), it’s open seven days and on the public holidays that the mall is open (which is all but three and a half days). This is far more convenient for me.

I also use that particular chain rather than the two places that offer “free prescriptions” (meaning no $5 co-pay) because the cheap places are Australian-owned, and they’re driving smaller pharmacies out of business. Going to locations of that NZ-owned chain supports New Zealand business, but it has the advantages of being part of a chain (for example, it offers rewards points and specials) that small independents don't have. The chain’s stores are usually franchises, so they’re small NZ-owned businesses, just with a bigger company behind them, All of which puts them in a stronger position to survive foreign competition. Basically, it’s my pesky values in action again.

This, then, is another attempt at improving the way I feel, and so, what I can do each day. I don’t know that this attempt will be any more successful than previous ones, nor how likely it is that this attempt could end in a setback. But I have to try. Again.

That, and 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.