One down, five to go.

It’s been a week already since I’ve been off spironolactone! That means just five weeks left to go before I can repeat the AVS. I’m happy to report that the postural hypotension side effect I was increasingly experiencing while on spiro is almost completely gone. For some reason, though, I remain ridiculously sensitive to alcohol and caffeine. Caffeine! I’m the girl who can drink a pot of coffee, then roll over and fall into a sound sleep. Or, at least I was that girl. Now I’m the girl who can only drink one cup of coffee and then has to call it quits.

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Dialing back the caffeine, if that is indeed what I have to do, is probably going to hurt me more than any of the other dietary intolerances I’ve dealt with. I’ve been lactose intolerant since birth, fructose- and wheat-free for almost 10 years, and none of that has ever bothered me – mainly, because I really don’t care much about food. I don’t like being hungry, but aside from that – eh, whatevah. With the salt restrictions that came with the PA diagnosis, my interest in food has gone from barely there to nonexistent.  I’m far more inclined to eat a handful of almonds and call it lunch than I am to actually give it any thought.

So there has been weight loss. Not a lot – 10 pounds, maybe – but I’m not very big to begin with, so 10 pounds looks like more than it is on me. And, this being Los Angeles and all, people have noticed it.

Yesterday at work, a male coworker, who has asked me about my “diet” before and is aware than I have “an illness,” started interrogating me about my “weight loss plan.” He’s got a bit of a tendency to gain weight around the midsection – hey, welcome to forty! – and really wanted to know how I do it. I explained to him that it’s not intentional, that it’s due to an illness and that I can’t eat much of anything, so I don’t really bother. His response? “That’s great! Can I have what you have?!”

I definitely need to add that to my list of What Not to Say to a sick person.

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Repeat performance.

I’m off of the spironolactone, back on the giant potassium pills, and I could not be happier.

The nephrologist enthusiastically gave me the green-light to stop the meds immediately and repeat the AVS. We’re tentatively looking at the last week of August, since the spironolactone has to be out of my system for 6 weeks, but since I was on it for such a short time it’s possible I may be able to do it sooner.

Yes, there is the very real possibility that I could repeat it and it will once again be inconclusive. But I’ll jump off that bridge when I get to it.

A second chance.

Today I called the interventional radiologist, the one who got sick and had her associate do my AVS, the one who called my nephrologist last week to discuss my botched AVS. And I’m glad that I did, because I now have a bit more information than my nephrologist was giving me.

Apparently the entire test results were inaccurate. In order to properly interpret the results, BOTH the left and right adrenals have to be sampled correctly and compared to each other. The fact that my right side lab values were out of range is not nearly as relevant as the right side compared to the left side. To just assume that the high results meant the right side was also bad was… a little premature.

The interventional radiologist wants me to repeat the test. Knowing what I know now, I’m all for it. So my next step is to discuss it with the nephrologist when I see him on Wednesday, so he can contact my insurance company to preauthorize it. Then I have to stop the meds – yay, kind of – for 6 weeks, and then I can repeat the AVS.

It’s too soon to be feeling hopeful, and after all I’ve been through I really should know better. But – I have to admit my outlook is a little better than it was when I woke up this morning.

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Ironically, I got home today to find my final bills from the first AVS in the mailbox. Total cost, almost $30,000. My portion? $150 for the hospital room and $30 for the doctor. I’ve seen a lot of searches coming here for “cost of AVS” and while I’m in no way certain that all insurances will be so accommodating, I figured I’d put that out there for the curious.

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.