Indecision.

On Friday, the nephrologist called me and asked me to guess who he had just gotten off the phone with. Turned out it was the interventional radiologist who was originally scheduled to do the AVS, but who became ill and had her associate do it instead. Apparently she reviewed my results and confirmed that the AVS was done incorrectly. She wanted to give me her opinion that I should have it re-done – don’t even assume that the results on the right side were correct, as I had been doing; just start from scratch and do it again as if the first one never happened.

I’ve been kind of a mess ever since this phonecall. I thought I was, somehow, sort of settling in to the idea that I’m stuck with this damned condition for the rest of my life, so why not make the best of it? Oh no. Not me. Apparently I’m still hanging on to that hope, however tenuous that it may be, that maybe I can be fixed.

The same phonecall also came with the instructions to increase the spironolactone to 37.5mg/day. In the interest of science, I’m going along with it – there’s a part of me that really wants to see if I get the same side effects as I did when I took it a bunch of years back. I also want to see if it works at all, for that matter.

And that means giving it time. And if I give it time – which could be several months – and then decide I want the repeat AVS, that means waiting an additional 6 weeks while the spironolactone clears out of my system before I can have that done, because the results will not be accurate otherwise.

So there’s a part of me saying just stop the spironolactone now, schedule another AVS, and get a definitive answer.

And it’s that duality – the fact that I have two choices at all – that is making me kind of crazy right now.

On Friday, while talking to the nephrologist, I thought I had worked out a plan: stick with the spironolactone and see what happens; if it becomes problematic in any way, try the eplerenone and see what happens; if that doesn’t work, head straight to the repeat AVS.

It seemed so logical at the time, but I’m starting to think that I’ve got the order reversed and the plan should be as follows: stop the spironolactone immediately, schedule repeat AVS; if the PA is lateralized get surgery; if the PA is bilateral go back to the spironolactone and see what happens; if it becomes problematic in any way, try the eplerenone and see what happens.

My next appointment with the nephrologist is Wednesday morning. I’m giving myself until then to make up my mind one way or the other.

Drugs, week three.

The cruel irony behind all of this? I never much enjoyed the idea of taking drugs recreationally. No wonder the fact that I have to take something daily for the rest of my life is getting me down! Anyway.

It hasn’t been all bad. It’s the psychological stuff that sucks, but aside from that I am seeing some improvements. These are good things:

  • I’ve only had one attack of palpitations in the past two weeks.
  • No more Giant Potassium Pills.
  • The blood pressure and tachycardia have started dropping a little bit. It’s still crazy out of control all over the place, but I keep an average and the average for both has dropped steadily over the last two weeks.
  • My trapezius muscle spasm has gone away for the past three days. This is the longest it’s been gone in about 7 years.
  • The only time I woke up with a headache was the day after I had a glass of wine. Er, make that two glasses of wine. Prior to the spiro, I could count on waking up with a headache just about every other day.
  • I don’t seem to be getting episodes of low blood sugar anymore. Maybe there is something to the notion that this will have a positive impact on my insulin resistance.

But other things aren’t so great. Such as:

  • That wine I mentioned? About an hour after I drank it I got hit with the most intense dizziness I’ve ever felt. Won’t be doing that again soon. I’ve had numerous bouts of dizziness without wine this past week, though, so perhaps the wine was only a coincidence. Still… proceeding with caution.
  • Postural hypotension. When I get up too quickly from sitting, of when I come out of forward bends in yoga class, my pulse starts racing and I feel like I’m going to black out. It’s supposed to be temporary, according to the doctors, and is not unexpected that this is happening because they believe my baroreceptor reflex is not working properly because of the aldosterone excess. I sure hope it passes quickly, since I’m not much enjoying it. I do not want to be forever known as The Girl Who Passed Out in Yoga Class.
  • And the big one – the psychological stuff. I’ve gone from the mindset of “a relatively simple surgery and the problem is solved” to “I’m stuck with this for the rest of my life,” and that’s not an easy transition to make. This may sound melodramatic, but the only time in recent memory I’ve felt this emotionally out of control was a couple years back after a friend’s suicide. I would be fine, and then out of nowhere it would hit me – I will never see this person again. This feels really similar – I’m fine one moment, and then I’m not, because – I will never have my old life back. Or maybe because The possibility that this will be cured has been taken away from me. I really, really need to figure out how to accept this and move on, but for now? I’m maybe only 50% there.

 

Drugs, one week later.

As of today I’ve been on 12.5 mg spironolactone per day for a week. And… paradoxically, the biggest change seems to be that my blood pressure is higher than ever. Saw the nephrologist this morning and he thinks this is okay. I’m not so sure.

The nephrologist ordered some bloodwork, and based on my potassium, he thinks the spiro is doing it’s thing, but not enough. My potassium came back at 3.9. Considering that he had me cut back the supplements, and I know that missing even one of those can drop me into the low 2’s, I’ll take this as evidence that he’s correct in saying the spiro is working, as it is supposed to normalize potassium nearly immediately.

That’s the good news. The bad news? Starting tomorrow I have to up the dose to 25 mg/day. That was the dose that I was taking long ago, that gave me the terrible side effects. I’m still willing to believe that being 10 years older might make a difference – even without an endocrine disease, I think the hormones of a 46 year old woman are probably quite different than that of a 36 year old. Still, I’m not happy about the higher dose. And I’m a bit worried about the path that I am on in general.

There’s a woman around my age, with nearly identical symptoms, at the Yahoo Hyperaldosteronism support board who has opted for meds instead of surgery, for reasons I can’t recall. While she appears to be doing everything right – taking the drugs, watching the sodium intake, upping the potassium intake – she ended up in the ER last week. Her endocrinologist has “given up” on her and pretty much done the same thing my nephrologist wanted to do – referred her to a specialist away from home.It sounds like she has the resources to deal with this, but like me, is concerned about little things like, oh, you know, losing her job.

This brings up a medical issue that nobody ever talks about, but it seems like it’s not all that uncommon: what happens to those of us who have all of our local experts absolutely stumped? Particularly those of us who do not have bottomless resources and wide-open time for travel? Our healthcare is tied to our job, our job is tied to our ability to be there… But then something like this happens. What next?

It will be interesting to see how this turns out for both of us.

Because I don’t do denial.

Back from today’s nephrologist visit, with a slight detour from yesterday’s plans.

I spent a somewhat sleepless night pondering the following: if I repeat the AVS and it successfully shows that the RIGHT adrenal, the one WITHOUT the tumor, is bad, but the LEFT adrenal – the one with the tumor – is okay for now, would I really go through with surgery that would leave me with one adrenal gland and a tumor still in my body?

Tough question, isn’t it. I’ve said it before and I’ve said it again – I’ve had a sort of 6th-sense feeling from the start that my disease was bilateral. Even with the not-quite-successful AVS,  at present I know that the RIGHT adrenal was very likely successfully cannulated, and that it is bad. I also know that the left has a tumor. And I also know that up to 50% of PA cases are bilateral.

I’m not so sure that I want to go through the AVS procedure again only to be told “Sorry kid, there’s nothing we can do for you but prescribe meds,” when I can be told that, RIGHT HERE, RIGHT NOW, without another set of hospital bills coming my way.

So here’s what I’m doing. I’m taking the meds. I’m doing this in a very systematic way. Today I started on spironolactone, which I have taken once before and I consider it the devil. I know that if I don’t do this and prove that I can’t take it, my insurance company will not pay for eplerenone, the only other medical option. So I’m getting this out of the way first.

Why do I consider it the devil? It has a pretty ugly set of side effects. It affects estrogen reception. For some people, this means it causes breast enlargement, breast pain, and menstrual disturbances. When I took it, I was one of those people, and it was pretty awful, and I fully expect to be one of those people again. But I’m willing to give it a try because you know, I’m older and maybe my body chemistry has changed somehow and it won’t be so bad. Yeah, I know, I’m crazy. What can I say.

Essentially I am proceeding as if I knew, with full certainty, that my disease is bilateral. I don’t know this. But I do know that there is a 50% chance that it is, and I do know that I have a malfunctioning right adrenal gland. Knowing those things, I feel as if doing the AVS over again would just give me false hope once again, and the outcome would be exactly the same: Sorry kid, there’s nothing we can do for you but prescribe meds.

And so my next adventure begins: finding out how awful, really,  living with this for the rest of my life is going to be.