Go, Learn Things

Anyone who's a fan of NCIS New Orleans knows that when Pride sends his team out, those are his instructions. Sometimes, however, it's not that deliberate in real life. A chance comment in somebody else's conversation can lead to tons of information.

And now I've got something else to explore and worry about.

One of our lapidary club's oldest and sickest members made a long-awaited appearance at our general meeting on Monday. He and his wife sat at the same table I was at. Unsurprisingly, much of the conversation before the official meeting started was about his health. It turns out that he, too, has to deal with A-fib. Only these days he has to deal with it without the benefit of the medications that keep my cardiac rhythms  pretty normal. Of course my ears perked up, particularly when his wife started talking about the toxicity of what he was, and I am, taking.

If you follow this regularly, you know about the health problems I had when Steve and I tried camping in Wyoming in order to see the totality of the August eclipse this summer, when I spent a few days finding out about the (high) quality of the hospital food in St. George, Utah instead.

I have since seen my cardiologist, a pulmonologist, and my primary, and have follow-up tests and visits upcoming with all of them. We've ruled out a number of things, such as Valley Fever. I am not having problems breathing when I do stuff, but that's probably because I don't have any energy to do anything that might remotely be considered exercise. OK, I vacuumed the house, do laundry, have changed my sheets, done some dishes. But there's a list of "haven'ts" that ought to be easy to do but hasn't been managed yet. There are small bushes to prune, and need another watering. Weeds need to be plucked out of the front yard. I need to work on lapidary stuff, from polishing rocks to putting them in settings in order to make a product to sell.

Somehow the energy isn't there. I take my bag of stuff to the club, and find myself just sitting there. I can't even quite settle on whichever next project there is to do.

OK, I know it's easy to say right off, "depression." It doesn't feel  like it. I have emotional energy, and an optimistic mood.

I have a heck of a time getting up and staying up in the morning, leading to a heck of a time getting to bed when I feel sleepy at night. Shorting myself on sleep to put things right just winds up putting me on the edge of A-fib. Not a top choice.

My cardiologist says everything is perfect. We're trying some experiments to see about cutting down on some meds to see whether and how much I can lower them without causing problems. We're on a try-this-and-report-back-in-a-couple-weeks program.

My primary - well, I'm debating switching but somehow that seems like too much work when I'm already filling out medical forms and more medical forms and.... It's not just that he's terrible about refilling prescriptions, it's that he doesn't seem to have any interest in more than one tiny detail of what's happening at a time, like he only cares about how he can write up each visit for billing. He had, several months ago, noted my thyroid levels are a bit low and I'm now taking pills for that. May I add without his retesting my lab levels? Or my A1C, or...  fill in the list.

Then there's that thing in my lung, which we have to wait till the end of this month for the next CAT scan to see what may have changed and how.

So where is all this going? Well, that table conversation, the part that really perked up my ears, was the phrase "amiodarone toxicity".  My cardiologist had just mentioned that amiodarone is the one of my drugs that he really hoped I would be able to cut down on, since it's very effective but has bad side effects. No details to go along with that statement, of course. Now here was a font of information, first-hand knowledge of the negative effects, backed by life-threatening issues, and all the time in the world to share their story. (OK, 'till the end of lunch, anyway.)

You know that the pharmacist sends every bottle of pills out with a two-page print-out of stuff to watch out for. It's always either too vague (OMG, a headache in some people?) or way too technical, and soon they all sound the same. I know to avoid alcohol,  grapefruit, and too much sunshine, but not for which drugs, and don't care anyway because those are just not me. In contrast, this conversation was hitting a few too many notes close to home. So was follow-up research online.

The toxicity can be a reaction to stressors to the body, such as surgery. (I count 5 procedures in the last 2 1/6 years, two major.) It can mess with your thyroid levels, your lungs (some technical term for damage that shows up on CAT scans), change sleep patterns....

Are you seeing any patterns here? So far my exams have been in aid of looking for horses, as they say, in the array of symptom hoofbeats. It's time to start asking about zebras, now that I know what the questions are. And I know a lung biopsy can make a definitive diagnosis. When you're spread out between three different doctors, the likelihood of any one seeing the whole picture is less. Every one can easily assume somebody else is putting the whole thing together. Throw in a couple of out-of-state docs with their own long-ago reasons for some of these prescriptions, and it can get to be a bit much. Everybody acts in good faith so who questions previous decisions?

I now also know that it can take months to clear the drug out of the system, if it has become a problem. The process involves a lot of steroids, which sounds like a whole 'nother set of battles. But I can go armed to this month's appointments with a different set of questions. In other words, go, learn things.

By the way, that friend from the club? He's had to quit both of the medications I currently take for A-fib. And yep, he's living with it uncontrolled. Day by day. Prognosis uncertain. If you are one of those who believes in prayer, send some Bob's way. Maybe just a well-wish. He's a nice guy.