Aldosterone suppression test, day three.

Today started with a blood draw, bright and early. The phlebotomist asked me what I was doing with the rest of my day. I’ll bet he didn’t expect my answer would be, “Staying home and peeing in a bottle!” but hey, I speak the truth. We both had a good laugh about that one.

When I got back from the lab, I measured my blood pressure and it was 165/125. For reference, that second number? Shouldn’t really ever be higher than 80. Mine’s usually in the high 80s, low 90s at most, but that’s because of the PA. For a brief moment I panicked and almost called 911, since a diastolic reading of over 110 is considered hypertensive crisis and holy crap 125?! Then I thought I should check it again: 165/100. Which is ballpark for where it’s been throughout the past three days, and where it should be while taking the sodium. Then just to be certain, a few minutes later, 155/95. Whew. Crisis averted.

Second moment of panic came while I was on the phone dealing with an insurance issue. My network of friends checking up on me called, and I didn’t know how to use the call waiting. (Yes, I’m an old fart who doesn’t really know how to use her smartphone! In fact, I thought I had call waiting disabled. Oops.) When I hung up I had a couple of panicked texts and voice mails and – I felt kinda dumb about the whole thing. But I suppose it was a good test of the emergency support system – at least we know it works!

Anyway, I’ve got one more dose of the NaCl, then tomorrow morning I get to pee in the bottle one last time, and then drop my little offering at the lab, and I’m done. And as long as nobody at the lab screws up*, I don’t have to do it again.

So now that all is said and done? The scary stuff out there about the risks of this test, including potassium dropping too low and stopping the heart, or stroke or aneurysm due to the elevation in blood pressure from the sodium, seem to me to be a bit exaggerated. I think I got lucky on this one – since my “normal” blood pressure, unmedicated, is on the low end of high, the sodium didn’t cause too much of an increase. The other expected side effects – nausea, headache – were only during the first day, and were really minimal. This test seems to have a really bad reputation, but all in all it was pretty unremarkable.

*This morning I had to tell the phlebotomist how to correctly do the blood draw for renin, although there seems to be several schools of thought contradicting each other on this one.

Aldosterone suppression test, day two.

So far, so good. Today’s job was to take 2mg NaCl three times – the first two are already a done deal. The side effects have been absolutely minimal – a little bit of nausea about an hour after taking it. I did wake up at 3am with a crazy bad headache, but fortunately it’s okay to take super double extra strength aspirin/caffeine/acetaminophen cocktails during this test – I popped one of those and went back to sleep and woke up magically headache-free. The worst thing so far is that my potassium dropped to 3.2, so I’m taking extra doses of the giant pills.

Tomorrow: more blood-letting, and, whee, big fun – it’s the day I get to pee in a jug all day. Then Thursday I take that in to the lab, submit myself to even more blood-letting, and then I’m on my merry way, unless tomorrow’s labs show even lower potassium, in which case I may end up being subjected to potassium infusion. Um, let’s hope not, okay?

I consider myself really, really lucky that I’m almost 2/3 done with this thing and – fingers crossed – nothing scary-bad has happened. There’s a bit of negative information out there about the risks of this test, and while I’m sure the risks are all very real, I almost think Dr. Google had me unnecessarily worried.

Also? I consider myself really, really lucky that I’ve got a nice little group of friends looking out for me right now. You know who you are. Thank you.

Aldosterone suppression test, day one.

Today’s routine: early morning blood draw, 2mg of sodium chloride 3x/day. So far, so good – I took the first dose at 7am and felt fine, although I got a couple of blood pressure readings that bordered on the lowest end of what my doctor described as dangerous. I fully expected it to go into the “dangerous” zone after I took the second dose this afternoon, but – nothing. It actually went down a bit. About an hour after the second dose I got pretty nauseated, but it was over with pretty quickly.

I’m feeling a bit optimistic that this is going to go well. One day (almost) down, two to go…

Let the fun begin.

So. After a blissful week on Oahu, it’s back to reality. For my next act, I will be having an aldosterone suppression test, also referred to as oral salt loading test. Apparently there are no infusion centers affiliated with UCLA that will do the quicker, less scary in-office saline suppression test, so lucky me, I’m on my own for this one. Here’s how it’s supposed to go.

  • Day one (this coming Monday, for those of you who are keeping track): go to the lab to get a BMP drawn, take 2 1-gram NaCl pills every three hours. If my potassium comes back too low when the BMP results are in, the whole thing has to stop until another time when my potassium is higher.
  • Day two: Take 2 1-gram NaCl pills every three hours. This should be the easy day, but chances are by now, I will be feeling pretty crappy from all that NaCl.
  • Day three: Blood draw for BMP, PRA, and plasma aldosterone. Take 2 1-gram NaCl pills every three hours. And – here’s the fun part – after that blood draw, I pretty much can’t leave my house all day because I have to pee in a gallon jug for 24 hours! And keep it in my refrigerator! Actually, I have THREE gallon jugs, just in case. Yeah, you read that right – I just told the interwebs that I’m a frequent pisser. It turns out that it’s part of the condition – people with PA have to pee all the time. And here I just thought I had a teensy bladder.
  • Day 4: Pee into the gallon jug one last time, then drop it off at the lab.

This whole routine is mostly being done to please my insurance company. In a normal person, the labs that are run after this will come back with incredibly low aldosterone levels. In a person with PA, those levels will be incredibly high. (Duh – they are already incredibly high!) For this reason, I’m especially resentful of the fact that I have to do this, but whatever – I’m sure I will be in for far more unpleasant stuff in the near future.

Some people can do this and feel just fine. Others will retain water, which will lead to all sorts of icky things like headaches, bloating, nausea, elevated blood pressure, heart palpitations, and so forth. I already know that I’ll fall into that latter group – I can barely eat restaurant food without getting those symptoms thanks to all the salt most restaurants use. Sometimes blood pressure will rise high enough to warrant a trip to the ER. Here’s hoping that won’t be me.

While all of this is going on, I’ll be off work for three days. I intend to use that time productively to write three letters to my past general practitioners who missed all of the symptoms of PA that I presented with. I’m looking at you, Dr. Christine Oman of Arcadia, CA; Dr. Karen Kim of Good Samaritan, Los Angeles, CA; and Dr. Brent Michael of Santa Monica, CA.

Suspicions confirmed.

I have a 1cm nodule on my left adrenal gland, with the characteristics of an adrenal adenoma. The chances of it being cancer are very, very tiny. The chances of it being an aldosterone-secreting nodule are pretty strong.

Next step: a salt-loading test (sorry, can’t find a good link) or saline-suppression test. The hospital my doctor works out of doesn’t do the latter; the former would require three days off from work, while the latter takes a half-day or so. I would prefer the latter, so my doctor is going to try to arrange to have it done at UCLA.

Next step after that: adrenal vein sampling (AVS), also at UCLA. It’s a pretty gnarly sounding deal and I’m not looking forward to it.

If those tests are enough to persuade the insurance company to cover it, and if the AVS proves that it’s only the left adrenal that will be affected, then I’ll have choices: laparoscopic surgery in which the entire gland will be removed, or remaining on medication for the rest of my life.

I’m a crappy candidate for surgery due to a very small support network and my own stubbornness when it comes to avoiding asking anybody for help. But you know what?

I want that sucker out of me. Yesterday.

The CT scan is done and I should have results by tomorrow evening. It was uneventful except:

  • The receptionist tried to charge me a $150 copay because I “hadn’t met my deductible.” On NO COFFEE – gasp, horrors! – I had to explain to her that I have fancypants Cadillac insurance with no copay and no deductible.
  • My vein went into spasm when the nurse tried to put in the IV line. Ouch. Fortunately the other arm cooperated beautifully.
  • The IV contrast, which I’ve had before with no problems, burned like hell when the technician turned it on. She fixed it immediately but wow, I wasn’t expecting that.

And thus my week as a lab rat concludes. Back to the waiting!

ETA: If you’re having a CT scan done with oral contrast – which this was, which I had never had before – you may want to skip eating afterward. Evidently this stuff takes a couple days to leave your system and can cause nausea for some people. Guess what? I’m one of them.

Save the date.

Abdominal ultrasound this Wednesday, CT scan this Thursday. I should know within a day or two of that if they’ve identified an alien life form aldosterone-producing tumor growing somewhere in my body.

I’m alternately scared of what they will find, and scared of what they will not find. And relieved that they are, at least, trying to find it.

Still waiting.

I’m having the CT scan and an ultrasound next week, don’t know which day yet. My doctor escalated my case as far as he could but still couldn’t get the insurance company to spring for the CT angio. Based on what the CT and the US reveal, if anything, I’ll have to *go back* for the CT angio if they then decide it’s necessary.

Giant Potassium Pills

They're like the size of a quarter. Really.

In the meantime, all I can do is… nothing, really, except keep taking the big-ass potassium pills.

Flea market medicine.

My employer changed our insurance provider to Cigna on the 1st of the year. When this happened, my out of pocket cost for insurance almost quadrupled – I pay almost $300 a month for this plan. Now that I need it, I’m glad I have it. But. But, I do expect a certain degree of service in exchange for my dollars. (I know, I know – I should just lower my expectations. Trying. Really!)

Last week my doctor submitted the preapproval stuff to Cigna for a garden-variety CT scan, as well as a more complex abdominal angiography. Today I got a phonecall from a Cigna “patient advocate,” which I think is marketing-speak for a case manager, which I gather they assign whenever one of their insured suddenly is going to cost them a lot of money.

First, the good news; the CT scan was approved. Now it’s just a matter of scheduling. Then, the bad news; Cigna rejected the request for the angio.

I’m not going to even go into the ridiculousness of this – it’s not a pleasant procedure, people; my doctor would not order it out of frivolity, nor would I consent to have it if it wasn’t absolutely necessary. It’s up to my doctor to fight for it now; I have a feeling that the outcome of the CT may predict whether this will be a fight or not.

BUT. It gets better. After explaining all of this to me, the “patient advocate” moved on to her next order of business: to ask me if I would mind having the test done at a less expensive location than the one my doctor picked.

Um.

Wow.

Haggling? Like at the flea market? Are. You. Freakin. Serious??

Needless to say, the test will be done at the expensive facility of my doctor’s choosing.