Comedy of Errors.

So this morning? I showed up at the endocrinologist’s office to find out my results from the sodium loading.

And… wait for it…

There aren’t any.

Somebody at UCLA’s Santa Monica Clinical Lab effed up, big time, with my 24 hour urine sample. They checked the metanephrines, of course (which were negative, of course), but…

THEY NEGLECTED TO CHECK THE ALDOSTERONE.

Yes, you read that right.

***bangs head against wall***

The endo wanted me to repeat the test. I told him, HELL NO – It’s been over a week since I completed it and I STILL have a horrendous headache and elevated BP and probably the worst trapezius muscle spasm I’ve had since… ever, really.

I am done. DONE with the testing and the clueless doctors and with being medically interesting. Enough already. As I’ve said for years – my body, my science experiment – and even if it kills me, I am determined to be in charge from here on out.

There are two options, really. It’s simple. First get my potassium back under control (feeding me giant doses of salt pills will do the exact opposite) and hope that takes care of the BP once again. If it does – problem solved. I have hypokalemia – easy peasy, there’s my diagnosis. If that fails, I start taking the dreaded eplerenone. If that works – easy peasy, I have a hypertension diagnosis on my record and nothing more.

And if neither of those solve the problem, then maybe I’ll be willing to revisit this testing stuff. But at this point, I’m ready to just let the damned disease have its way with me, even if it kills me.

Because really, I think the medical establishment’s incompetence is more likely to kill me than anything.

Don’t want to speak too soon, but…

… I just got off the phone with my primary care doctor, who called to read me the AVS results. It was a cruel joke of an ordeal involving my cell phone cutting out every thirty seconds or so, combined with my dyscalculia (diagnosed in college! really!!) causing me to write everything down wrong, but there were two main takeaway points that I hope hope hope are accurate:

  • He believes the procedure was done correctly this time.
  • The left to right ratio was 18:1 showing the abnormality on the left side.

He’s not the final word; that would be my nephrologist, who I don’t expect to hear from until next week at the earliest. So I can’t say for certain that any of the above is true and correct.

But I can say I sure hope it is.

Waiting waiting waiting.

Tomorrow marks three weeks post-AVS. As of today, I know – nothing. Zip, nada, bupkis. My primary care doctor said he’s going to try to see if he can dig up anything via UCLA’s computer network within the next few days. I’m not holding my breath.

I am, however, making lots of stupid mistakes, forgetting important things, and in general feeling run down and worn out. But hey, perhaps it’s not my fault! According to this study:

anticipating medical test results

affects processing and recall

of important information

No kidding??

One week post-AVS.

I’m not going to lie here – it hasn’t been an easy week. Much like my first AVS, I don’t think I’ve had a particularly bad time of things, but this time around has been a little different. For one thing, I’ve been really, really tired. I mean, stupid ridiculous tired. Ordinarily this damned disease does not have a lot of impact on my day to day life – after hearing the stories of how some people are completely disabled by it, I consider myself one of the lucky ones. I get through the workday just fine and have time left over each day to do the things that are important to me. But this week, not so much. I’ve had everything checked out and nothing is wrong, at least not on paper. There’s no explanation for why I want to do nothing more than sleep, other than “you’ve been through a lot and your body is still recovering.” Okay, fine, I’ll accept that excuse for a couple-three more days. Maybe.

The other thing that’s different this time around is that there’s a bit of bruising at the site on the left where the cannulation was done. Yeah, that left – the one they didn’t quite get right the last time. Plenty of jokes have been made about the bruising being a sign that they got it right this time, and while joking is (in my opinion) the healthy thing to do, I’m a little annoyed. My first day back at yoga did not go nearly as well as the last time – I think I might have felt actual pain a couple of times. And rather than feeling energized afterward, like I usually do, instead all I could do was crash on the sofa. A perfectly good beach afternoon ruined – but I will give myself credit for having the common sense to listen to my body rather than heading up the coast regardless.

So, okay, I’m tired and a bit uncomfortable. Minor complaints. I’m also really really glad I had the chance to repeat the AVS, and – hey how did that happen? – I’m already a week closer to getting some answers. Sleeping a lot may be utterly boring and not what I would like to spend my free time doing, but on the bright side, it certainly makes the time pass quickly.

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.

~ ~ ~

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.

Sorting it out.

I have a plan. Thanks to some wonderful friends, both in real life and in the online support forum space, and liberal amounts of coffee, I think I’ve sorted out what needs to happen.

  • Repeat the AVS at UCLA.
  • If bilateral, end of story: I try the meds. I already know that in that case, that is my only option.
  • If inconclusive again, end of story: I try the meds. I will at least know that I have done my best to get myself treated locally.
  • If I can’t tolerate the meds (but AVS was again inconclusive), I will find a way to get myself to the Mayo Clinic in Rochester, MN.

It’s not all that complicated, really. It’s just a matter of getting the AVS ordered again, and getting the insurance to cover it. My mission today: to get my primary care doctor on board with this plan so that he can fight the fight for me. Because really, I think that should be part of the reason I’m paying him.

Two choices.

My nephrologist called me this afternoon.

The AVS was done incorrectly. Based on the lab values listed for my left adrenal – the one with the tumor – he is convinced that the interventional radiologist was in my hepatic vein, rather than my adrenal vein.

His recommendation? Travel to Mayo Clinic or NIH to have it re-done.

I explained to him that travel was not an option for me, and asked why I can’t just have it re-done at UCLA. His response was that they messed it up the first time, so why would I want that?

Going into it, I knew there was only a 65% success rate on the first try. I was fully prepared to have to do it again, and still am.

The conversation took a turn toward drugs at that point. I’m pretty against the whole idea.

Assuming that the lab didn’t get right and left samples mixed up – not likely, but possible – since my right adrenal put out so much aldo during the test, chances are my left (the one with the tumor) did too and it’s bilateral, which leaves only meds as an option anyway. So he’s advocating that I cut to the chase and be done with it.

But he admitted that it’s possible that the left *could* have a tumor just sitting there, doing nothing, and be perfectly fine.

The only way to find this out is to repeat the AVS.

I need to know, so I’ll be spending my upcoming days fighting for my insurance company to cover that.

Because really, I only have two choices to work with here: accept a lifetime of medication without question, or get the AVS done again locally. That second option is worth fighting for.

Stay tuned.

The endocrinologist visit.

As expected, the endocrinologist visit was interesting. The endo had a slightly more complete set of AVS results than my primary care doc had, which showed that my RIGHT adrenal was producing excessive aldosterone and cortisol. The tumor is on the LEFT. He also doesn’t think that the AVS results are typical of primary aldosteronism – while the hyperaldosteronism is there, he suspects there may be something else going on also.

That mention of hypercortisolism from yesterday? All these years later, the endo still wants to test for that, so I will be doing a dexamethasone suppression test. Tonight at midnight I have to take a dose of dexamethasone, which is a steroid (I’m not really happy about this), and tomorrow morning I have to go in for bloodwork. He’s also doing blood tests for DHEA-sulfate and free testosterone. In lay terms – in addition to checking out my adrenals, my pituitary is now under scrutiny.

And then there’s my liver. That hepatic hemangioma – when the endo looked at my CT results he started to say “that’s nothing to worry about” but then when he saw the size of it, he backpedaled a bit and said he’ll want to look into that more further down the line.

So… nothing has been determined about what I will be doing with the rest of my life. And while this is so frustrating that I don’t have words to express how it feels, I am feeling pretty fortunate that I didn’t proceed with my nephrologist’s advice to skip the AVS and proceed directly to adrenalectomy.

Because that left adrenal adenoma? It’s starting to seem like it’s just sitting there, doing nothing.

Day three, post-AVS.

Today is the first day after the AVS that I didn’t immediately reach for my prescription-strength ibuprofen. This may or may not be a mistake. I’m about to attempt to put in a half-day at work, which also may or may not be a mistake.

Yesterday afternoon I drove the short distance to the shop where I play music weekly. Driving was no big deal; getting in and out of the car, on the other hand, was, as was not finding a nearby parking space once I reached my destination. I parked a block away, and had to walk so slowly that it felt like it took me an hour to walk that block. Once there, I was fine, but after an hour and a half of sitting in a chair I was exhausted and headed home to my couch.

These are minor things. I am still amazed at how easy this recovery has been, especially when compared to others I have read about. I’m not sure if I’m just incredibly resilient, if my medical team is far superior to others, or if the collective good thoughts of those around me are working – or a combination of all three.

Now that (I think) I’m past the point where I need to worry about post-AVS complications – I have had none – I think I can safely say that the hardest part of all of this was the trepidation leading up to the procedure. Between the anti-AVS sentiments of the doctor who moderates the Yahoo Hyperaldosterone support board, my hypertension specialist’s emphasis of the risks of the procedure, and the stories I have heard from others who have had negative experiences, I was probably more terrified of this procedure than of anything I’ve experienced in my life. It wasn’t necessary.

This is not to downplay the risks of the procedure. They are very real, especially when done by those with less experience than the medical team I am working with. But in the end, worrying about all of this doesn’t really benefit anybody – it’s something that needs to be done if surgery is the desired treatment for PA. I’ve known from the start that that is the outcome that I am hoping for. And what I will continue to hope for during this week or so that I will be awaiting the AVS results.

Note to self: hope for, not worry about.