Calling a new dance

Yesterday, I went back the clinic at Waikato Hospital for my follow-up with the cardiology team. This was to evaluate my current situation and medications. It was a very good visit, and maybe—maybe the start of a new path. Maybe. Again.

I was notified of the appointment in a letter I received (in the mail!) Friday of last week. I asked my sister-in-law to go with me because she’s a nurse and understands these things better than I do, and because the brain fog I often have might make miss something. She’s helped me with this stuff in the past, including last October when I had the private appointment with a cardiologist, the event that set the stage for the ablation procedure I had in December.

It turned out that the appointment yesterday was with the same cardiologist I saw in October (in New Zealand, specialists generally—maybe always?—also see patients in the public system, without charge to patients). This was a huge bit of luck because he was already familiar with me and my case, and he’d already met both me and my sister-in-law.

What was especially good about this is that he doesn’t have a “God Complex” like many doctors have, specialists in particular. He talked with me, not at me. For example, I’ve long complained about the side effects of the anti-coagulant I’m on, and he listened and asked questions. He then explained to me how they determine risk, and so, the need for such drugs for patients. He felt that my need for the medication was kind of borderline, so he asked me what I wanted to do—he didn’t tell me first what he thought I should do, he asked what I wanted to do. I can’t remember the last time a doctor did that.

I told him that I was worried about potential risk of stroke, especially because of my history of atrial fibrillation (which could return one day), and so, I’d prefer to remain on one for now—just one without the side effects. So, he’s changing me to one he prescribed for me back in October. I never started taking that drug, Rivaroxaban, because I was frightened of the risk of severe bleeding, something I mentioned 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.

My reality is simple: I’m alone. If I were to have a heart attack, it might kill me, and if it did I wouldn’t care (obviously). But I’m terrified of having a non-fatal stroke that left me unable to care for myself. I would never have wanted to become a burden for Nigel, of course, but I felt somehow more secure when he was there for me—not “magic shield” secure, as if I was invulnerable, but that if the worst happened, we’d figure it out like we always did everything else. I simply don’t have that sense of security without Nigel. I’m trying to manage the risk of stroke by staying on a blood thinner, while also taking a risk with a drug that could cause excessive bleeding because I need to end the side effects I’ve been suffering with for the better part of three years. It’s a calculated risk, one I’m actually willing to take because I can’t become a burden for Nigel if things turn out badly. I’m optimistic that things will go okay, though, and I actually have every reason to think that.

Another issue is my hypertension. Because my blood pressure medication is being discontinued, the doctor’s prescribing a new one for me, and that had to happen sooner or later. However, he feels that I’ll need two medications to keep my hypertension under control, something that’s important because if unchecked it could cause atrial fibrillation to return. So, he asked me to try a diuretic (commonly called a “water pill”) because it works differently. He’s also discontinuing Diltiazem, the pill that keeps my heart rate slowed.

I’m happy about all that. If I do have more energy/stamina and can move more, I’ll probably lose weight and that could mean that maybe my hypertension medication could be reduced/modified, and reducing my risk may mean I might not need a blood thinner any more. Honestly, though, all I really care about is having more energy again, and if that means I have to pee more often because of the diuretic, I definitely feel that’s a price well worth paying (that would also help prevent gout attacks, actually, by flushing my kidneys, which is a bonus).

He also said he’d like to get a new echocardiogram, since my last one was done in 2018, partly because my heart is showing extra beats (also known as ectopic heartbeats, which I talked about almost exactly a month ago). The doctor wants to be sure there’s no problem with my heart (there usually isn’t) that would have to be addressed. However, he said that the waiting list through the pubic system was very long, but also that he thought it could wait.

At that point, my sister-in-law pointed out that I can pay for the echocardiogram privately, and she knew I’d be worried about it until it was done (she was absolutely right, of course—another reason I was glad she was there). So, right now, the plan is that I’ll get the scan done privately, and see him the same day (I already booked a private appointment with him for the end of August, as I also talked about a month ago). He said to me, with a smile, “then you can tell me how awful the medications are,” which made me laugh.

The first goal is to get me to the point where my regular doctor can manage my care, without the need for specialists. I don’t know how all this will actually play out, of course, whether it’ll finally be the progress I’ve been hoping for over these past several years, or whether there will be a lot more stuff to work out before/if that happens. But the important point is that I keep pushing to be and feel better, and I’m willing to work on that, even when that means some risk. After all, nothing in life is without risk (obviously), and I feel the ones I’m taking are reasonable and necessary: The status quo simply isn’t sustainable. That's a fancy way of saying the much more dramatic, “I can’t go on living like this”, which is actually equally true.

This dance has gone on far too long. It’s time to call a new tune, one I can actually enjoy for a change, or maybe just not dislike as much. At the very least, I have partners in the journey, and that alone makes a huge difference.

This post contains what I posted to my personal Facebook, but, unusually, I actually wrote the two versions at the same time, moving text around as needed (as well as adding links and more detailed information to this version). I don't think I've ever done that before.

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.