Tuesday, March 27, 2018

Full stop

Not everything in healthcare goes to plan, and sometimes they go completely off the rails. It very often happens when we don’t expect it. Or, maybe we do. Either way, we have to regroup to move forward.

This past Friday, I wrote about my first visit to a new doctor, and as part of that post, I mentioned that she put me on a different beta blocker drug, Bisoprolol. I was to take half a tablet for a week, then switch to one tablet per day. I called it off on the third day.

The first day on the new drug, Saturday, was relatively uneventful, but Sunday night I felt weird. Later, I’d describe it as feeling like my insides were like jelly: Insubstantial, wiggly, tentative. Turned out, that was only the beginning.

That night I fell asleep in my chair—not dozing off, but falling asleep. That was weird enough, but when I tried to wake up later I discovered that the phrase “I couldn’t keep my eyes open” can be literal. I thought for a time I’d have to spend the night in my chair, but I finally forced myself awake so I could finish up the chores I’d intended and then go on to bed.

The next morning I had trouble waking up and then getting up. I tried to do things (I wanted to clean the house that day), but I had absolutely no energy. None. Several times I had to sit down in my chair to rest, and the harder I pushed myself to do things (like put on a load of washing), the longer I had to rest. I felt truly awful far, FAR worse than I did on Metroprolol.

In addition to the profound fatigue and jelly-like insides, I also felt like my head was in a fog, and that I could fall deeply asleep with no effort. Sometimes my legs were heavy, other times I felt like I was walking through a marshmallow.

At one point I was so wiped out, I wondered if the Ministry might contribute to someone to come in to clean the house, since I couldn’t. I guessed I probably wasn’t eligible for a disability pension—and then I pulled myself to reality again. And, I debated with myself.

I know that it takes maybe a couple weeks to fully adjust to a new drug, so I felt presumptuous to be rejecting the new drug so quickly. But then I remembered I was supposed to double the dosage on Saturday—in the middle of a four-day holiday weekend—and I thought, if I felt so profoundly awful then, how much worse would I feel on a full dose? With no doctor available to change anything for a couple days.

At this point I was distraught, and even felt like crying, and then my resolve took over: I was going back to my old drug whether the doctor agreed or not. This would be non-negotiable.

I rang the office, then spoke with the nurse who then talked with the doctor who agreed with my plan. I resumed my old drug, Atenolol. This morning, the first day on the previous drug, I felt dramatically better.

For me, the moral in this story is to ALWAYS trust your body, no matter what. We’re the only ones who can judge what we’re feeling, since much of that is subjective and not measurable by doctors. We have to trust our gut (often literally) and do what we need to do. This is actually the first time I’ve done that.

Beta-blockers are terrible drugs. Medical professionals, focused, as they are, on protocol and strong evidence and consensus approaches almost always focus on what good those drugs can do for the body, according to protocol, strong evidence, and consensus approaches. But they often fail to balance living with life. This is where we come in, and we must always demand better than what doctors offer.

In this case, the doctor hoped the new drug would be better for me, and had no way of knowing how I would respond, or how they would affect me. Once I told them how bad they were, they responded. Maybe there’s a better drug for me—or, maybe I already have the best I’ll ever have or, as I put it last time, that what I already have may be “least awful of all the drugs”. And that, to me, isn’t good enough.

So, what to do? I don’t know. I’ll try the one or two other drugs available, probably, and see. I am NOT optimistic. I thought about scheduling a second opinion with a private cardiologist (since it would take months to get an appointment through the public system, if I even got one), but aside from the high cost of going private, there’s no guarantee that they’d be able to think beyond the protocol, strong evidence, and consensus approaches used by other doctors.

Back in November, I wrote:
Recovery from any health issue is a journey, and so is making improvements designed to prevent problems from developing in the first place. But sometimes that journey encounters washed-out bridges, cul-de-sacs, and all sorts of other things that that slow or even stop the momentum. Working out why it’s happened is important, but recognising that it will happen from time to time is probably even more so.
This incident was one of those inevitable off-road incidents. I know a drug caused it, and maybe another one will be better. Maybe not. I have no idea what the way forward is if there’s no better drug, but that’s for another day. If I’ve learned anything about this journey, it’s that it’s always one step at a time. Sometimes those steps will be forward, sometimes not, but the most important thing is to concentrate on each step, not the one after that.

And so, on to the next step.

Important note: This post 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.

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