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.

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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.