Return of the giant pills.

My most recent labs showed a drop in potassium down to 3.8, so, as of this afternoon I’m back on the giant pills.

Image

At this point I still don’t have a definitive diagnosis… but at this point I’m not sure I care. Aldosterone is high and potassium is low; I only have one remaining adrenal gland, so really, how much more do I need to know other than “get used to taking lots of pills”?

I’m in the process of being referred to yet another specialist at UCLA. I suppose it will be worthwhile to learn if it’s another tumor, or if it’s hyperplasia, but as far as I know there’s no treatment other than drugs for either.

And as much as I hate drugs, I hate the headaches and the muscle spasms even more. And I hate the dangerously low potassium drops that used to land me in the ER. So really – let’s just get on with it and treat this damned thing.

Advertisements

Labs, the short version.

Got my results over the phone yesterday so I don’t have actual numbers, just conclusions:

  • Negative for pheochromacytoma
  • Negative for hyperparathyroidism
  • Slightly elevated aldosterone
  • Slightly decreased potassium

The plan is to re-test in a month or two, depending on the severity of my symptoms. Could be a tumor or hyperplasia in the other adrenal. Could be something else. Could be related to the Vitamin D disaster, although my nephrologist doesn’t think I took enough of it or took it long enough to matter.

So, while I’m relieved it’s not the first one, I’m slightly bummed it wasn’t the second, since that might have been a quick fix. I’m in no hurry to get back on the adrenal tumor train again, considering the treatment options aren’t exactly ones that agree with me. And I’m not naive enough to really believe this will pass, although I suppose anything is possible.

What I’m dealing with, plain and simple, is “it’s not fair.” It’s not fair to be an otherwise healthy person who gets an adrenal tumor in the first place, let alone gets a second one. While I knew full well it was a possibility that the adrenalectomy would not amount to a get-out-of-jail-free card, everyone on my medical team thought the chance of it reoccurring was miniscule, given my history and my otherwise healthy status.

For now, it’s wait and see.

What not to say (a reminder).

Look, I know you mean well. But you know what the absolute worst thing to say is when someone tells you the medical situation they are dealing with?

“It’s going to be okay.”

The fact that she is having something checked out in the first place already means it is most certainly NOT OKAY. What it is going to be is, simply, what it is, but it is anything but okay.

I’ve been a Sōtō Zen practitioner for a good chunk of time. In this tradition, first and foremost, we do not do denial. We face things as they are, be it good, bad, or ugly, and we do our best to understand that nothing is all one thing or another. There is no black or white; it is all shades of grey*. And that’s okay; and we fail, sometimes miserably, sometimes daily. And that’s okay too.

But please. Don’t tell me that what I am facing is going to be okay. It’s going to be a tumor, or it’s going to be a lifelong medical condition, or it’s going to be something completely different that the universe has not yet revealed to me. It is not – I repeat, not – going to magically disappear. And that, frankly, would be the only possible “okay” outcome. Which is not gonna happen. No. Not a chance.

However – it’s going to be dealt with to the best of my ability, and to the best of the abilities of my collective medical team. And while all of that, in and of itself, is “okay,” what it will be will be challenging and potentially messy and fraught with anxiety and frustration; all of which I am certain will, over time, prove to contain a few blessings amid a whole hell of a lot of prickly thorns.

But let’s be honest here:

It will not “be okay.”

Okay? Okay. Thanks.

(I’ve addressed this previously here, as well as a few other cliches that just really don’t help anybody. But this week, the winner by far is “it’s going to be okay.”)

*Which, coincidentally or maybe not so, happens to be my favorite color.

On hypertension.

I was in my mid-30s the first time I received a hypertension diagnosis. I knew that it wasn’t “idiopathic” (I like to say that’s medical-speak for “we’re idiots who have no idea what is wrong with you”), but it would be another 13 years before I knew what the cause of it was. Those were, frankly, 13 years of hell.

In the United States, standard doctor-patient protocol for hypertension seems to go something like this:

Doctor: “Lose weight. Go on (insert diet name of choice). Reduce stress. Exercise. Take a pill. That pill didn’t work? Okay, keep taking it, and let’s add two-three-five more for good measure.”

Never mind the fact that the patient before them is not overweight; eats a healthy natural diet free of sugars, processed foods, and dairy; and is a Zen practitioner and a yogi who gets outside on long hikes every chance she gets. Nah, just ignore all that. Take a pill! Better yet, take several!!

~ ~ ~

It’s unlikely, but one of the potential scenarios that I may be facing may well be just that – idiopathic hypertension. After all, I’m almost fifty; I endured a good 15+ years of cardiovascular damage due to an undiagnosed adrenal tumor; and while I never was a smoker, I grew up in a household filled with smoke and then left home to spend the next 15 years of my life hanging out in smoky bars and clubs. Damage could most certainly have been done.

Oddly enough, though, of the four possible outcomes I think I’m facing, this is the one that freaks me out the most. The others being, of course, tumors in my remaining adrenal (no cure, meds for life), tumors elsewhere in the endocrine system (surgery, but the possibility of a cure), or the type of tumor that may well just do me in. Those things don’t scare me. Idiopathic hypertension, or essential hypertension, does.

I know I’m oversimplifying here, but the truth is this: I think of essential/idiopathic hypertension as something preventable, kind of on the same spectrum as obesity and certain forms of diabetes. I think of it as something that happens to people with unhealthy lifestyles, people who smoke and drink and line up at the drive-thru and sit on their asses watching television every night. Something that happens due to laziness or ignorance or unwillingness to be disciplined. In other words, something that happens to other people – not to people who take good care of themselves. You know – not to people like me.

Intellectually, I know essential hypertension can happen to anyone. Intellectually, I know there are far worse things. But on an emotional level, the very possibility that I could have developed essential hypertension terrifies me more than adrenal surgery did, more than the possibility of a pheochromacytoma does. Because to me, essential hypertension represents only one thing: a long, slow, painful decline. A long, slow, painful decline that can only involve worse things like diabetes and kidney disease and getting fat (there, I said it) and being forced to be sedentary.*

I am not the only one who holds on to this stereotype. For 13 years, I was “treated” by a succession of doctors for whom this stereotype loomed so large they could not see the small, healthy, still-youngish woman seated before them, and all they could do was flip on the auto-pilot switch and attempt to apply their one-size-fits-all conventional wisdom that we all know doesn’t work for anybody.

~ ~ ~

It’s silly, I know. But I’d rather hear the news that I have another bad adrenal than the news that I have essential hypertension. The treatment for both will be the same – a lifetime of meds, which are certain to cause problems of their own; they always do – but there’s a difference: an adrenal tumor, at least, can never be said to be my fault.

*ETA: my primary care doctor assures me that this is not a given – that he has otherwise healthy, thin, fit, active patients who just happen to have essential hypertension. I remain unconvinced but am trying to keep an open mind.

Deja vu all over again.

Labs done today include: CMP, PTH, Phos, PRA, plasma aldosterone, cortisol, ACTH.

Doing 24 hour urine Thursday (Na, K, Ca, creatinine) then when I drop it off Friday morning having plasma metanephrines done.

Possibly worth noting: thanks to my white-coat HTN, my BP in the office was 150/100 (it’s running high 130s-low 140s, 80s/90s at home consistently and is always higher in a doctor’s office), and when he asked me how my job was going, he said my pulse went up by about 20 beats. So yes, there could actually be a stress factor at play here for once, but that doesn’t account for the headaches and the dizziness and the wild fluctuations in BP.

While my first conclusion was parathyroid/calicum channel issues, the doc’s first conclusion was pheochromacytoma – the idea being to rule it out, as they are rare and “unlikely” but – in his words, my entire medical history is “unlikely.”

I feel like I’ve been on this train before…