What not to say, revisited.

I think this post, from back when I went through the breast cancer scare, bears repeating. Let me preface this by saying that I realize most peoples’ intentions are good, and most of us are awkward and say the wrong thing more often than not – goodness knows I do it all the time.

But. There are just some things that I would appreciate if people would refrain from saying. Personally I think the only appropriate things to say are “I’m sorry to hear your bad news,” and/or “Let me know if you need any help” – BUT PLEASE, only say that second thing if you really mean it. If you’re just saying it to make yourself feel better – please don’t say it.

And also, please avoid the following:

Three Four Things You Should Never Say to a Person in the Process of a Scary Medical Diagnosis

  1. Don’t worry, it’s probably nothing. This is actually two things – a two-fer! Of course I will worry. And of course it’s something. They think I have something growing where it shouldn’t be, that is causing some serious secondary symptoms. As in, my-heart-could-stop serious. It’s already something – I’ve been prescribed ineffective and unnecessary medications for nine years now that have, if anything, exacerbated the underlying condition and increased my risk of early mortality. That’s a big, huge, elephant-in-the-room kind of something.
  2. You’ve been through so much already. Of all people, you should be able to handle this. Why yes, yes I have. And I take the implication that I am a strong person as the highest of compliments – really, I do, because this is important to me. But you know what? I thought I should be able to handle this too. And I’m not doing so well. And that’s okay. Because the only thing I should be able to do is get to my appointments right now and get this thing taken care of. And I’m having a little trouble maintaining that, and a job, and trying to keep the rest of my life as normal as possible. So acknowledge that I’m handling it, but please, don’t tell me that you think I’m doing a poor job of it. It really is the best I can do.
  3. Everything will be okay. I don’t know that. You don’t know that. A well-respected UCLA specialist does not know that. There’s a pretty big chance that, once sorted out, everything *will* be okay. There’s also a smaller, much smaller, chance that everything *won’t* be okay. But even the two most likely outcomes – medication for life, or surgery – are far from okay. So please, don’t insult my intelligence. I know that’s blunt and bitchy, and I apologize for it. But it’s true.
  4. I trust it won’t come to that. When explaining to someone that one of the things I’m facing is the prospect of surgery (which scares the living bejeezus out of me, frankly), this was the response I got today. Needless to say, it did not make me feel better; in fact, it made me want to go hide somewhere and cry a little. Because of the three things that they think are causing the excess aldosterone problem – bilateral hyperplasia, benign tumor, or malignant tumor – the most common is the benign tumor. And benign tumors are removed via surgery.

Okay, pity party over. Hey, I’m entitled to it; I have to leave the house *twice* in the next couple of days without – gasp! – coffee in the morning.

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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.

Bad news for Big Pharma.

Ran across this piece from ABC News, of all places – not exactly what I would consider a scholarly source. (Us trained librarians, we love our scholarly sources!) But it is a five-minute read that I wish my last internist had read back in August, which was when I decided that he was slowly killing me and that I had to fire him and find a new doctor.

The bold emphasis is mine, as are the comments in italics.

CHICAGO, Aug 18 (Reuters) – Tests for a blood-pressure regulating hormone called renin may help doctors decide which blood pressure drugs their patients should take, researchers said on Wednesday.

They said a mismatch between drugs and patient characteristics may help explain why many people do not benefit from blood pressure drugs, and testing for renin levels may help.

The one-size-fits-all approach must be abandoned,” said Dr. Curt Furberg of Wake Forest University School of Medicine in North Carolina, who wrote a commentary on the studies in the American Journal of Hypertension.

Currently, fewer than half of patients are helped when they take just one blood pressure drug, and many must take more than one to keep blood pressure down.

(Currently, I am taking none. I was taking three back in early August – Hydrochlorothiazide (HCTZ) 12.5mg, Diovan 360mg, and Cardizem 180mg. Since going off of them, my blood pressure is LOWER. I should never have been on the HCTZ in the first place – it’s contraindicated in patients with a sulfa allergy, and sulfa gives me hives.)

A study in May in the Journal of the American Medical Association found that about half of the 65 million people in the United States with high blood pressure have it under control.

Furberg said researchers have known for years that patients respond differently to different drugs for high blood pressure, yet this has not translated into tests and strategies that help find the best treatments for individual patients.

(Can I just say What? The fuck?? Oh right, an individualized approach is not cost effective. Silly me.)

In a series of studies in the same journal, three research teams looked at different aspects of this problem.

Stephen Turner and colleagues of the Mayo Clinic in Rochester, Minnesota, found that blood tests measuring for renin, a hormone produced in the kidney, can help guide doctors in selecting blood pressure drugs.

Patients who had high levels of renin were more likely to respond to the common beta blocker atenolol and less likely to respond to hydrochlorothiazide, a diuretic used to rid the body of unneeded water and salt.

A team led Michael Alderman of Albert Einstein College of Medicine in New York and colleagues found that some peopletaking blood pressure drugs actually have an increase in their systolic blood pressure — the top blood pressure reading.

(This is exactly what I’ve learned has been happening to me. The crazy cocktail of meds I listed above? It’s kept my BP in a *dangerously high* range rather than lowering it. I’m wondering who I should sue. I wouldn’t even know where to begin. Kidding, sort of.)

This was more common in people with low renin levels who were given a calcium channel blocker or an ACE inhibitor.

(One of the defining characteristics of my current condition is low renin. If they had run the damned test nine years ago, maybe I wouldn’t have ever taken a useless and unnecessary CCB or ACE inhibitor in the first place. Grrrrr.)

And a third study by Ajay Gupta of Imperial College London found that blacks were less likely than whites to respond to anti-renin drugs.

Furberg says the findings suggest the need for new guidelines for treating high blood pressure that incorporate tests to measure a patient’s renin levels.

(Well yes, at the very least. But while you’re there, check the potassium and aldosterone levels and be done with it. Hell, the potassium test is part of a normal chem-20, maybe actually *read* the damn results rather than let your patient walk around with untreated low potassium for three years.)

Morris Brown of Britain’s University of Cambridge said in a commentary that it may be useful to identify patients with extremely high or low renin levels who may not benefit from standard combination of drugs.

Brown said it may be time to consider measuring renin as a part of routine care for high blood pressure.

High blood pressure, or too much force exerted by blood as it moves against vessel walls, is the second-leading cause of death in the United States. About $73 billion is spent per year in the United States treating it.

(And therein lies the problem: these meds, the ones that have done me no good and possibly done harm, are Big Business. If, rather than prescribing an ever-growing cocktail of useless BP meds, doctors in this country ran tests to find either (A) the one that will work best, or (B) the cause of the elevated BP, which once resolved may not require any meds at all, well – you see where this could go.)

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.

Good news, bad news.

I’m a good-news-first kind of person, so I’ll just come out with it – pheochromacytoma has been ruled out. That noise you just heard was me breathing a big sigh of relief.

So, the bad news. After stopping meds and re-testing, my aldosterone levels were abnormally high and my plasma renin activity was abnormally low. This is consistent with primary aldosteronism, which is what the specialist first suspected.

First step is going to be a CT scan. Not a huge deal, been there, done that. Depending on what, if anything, that finds, I may be in for some slightly more unpleasant testing. Not going to think about that too much right now, but the two that scare me are the saline suppression test, which is probably going to make me pretty sick for three or four days, and the adrenal vein sampling. That last one? Let’s just say that for someone who does not like to rely on others for anything, it sounds like hell.

What does it all mean? In lay terms, a screwed-up adrenal gland (or glands). I’m back to looking at the three possibilities mentioned before: medication for life if both adrenals are affected; removal of a benign tumor (taking one adrenal gland with it) and getting on with my life sans medication; or – very, very, extremely unlikely, but in the realm of possibility – a cancerous adrenal tumor.

It also means that I’ve had it for over 9 years, and until I changed doctors last year, nobody even thought for a moment to check things out, writing off my unexplained hypertension as a “typical stressed-out woman problem” – true story, the last doctor – the one I fired – actually said that.

So yeah, I’m equal parts pissed off, and freaked out.

~~~

ETA: there’s a blog out there – one single, solitary blog – detailing one woman’s experience with PA: Diagnosis: Hypoaldosteronism. If I find others, I’ll start a links page.

ETA again: wait wait, there appear to be two PA blogs! Hyperaldo Too.

So here’s the story.

In December of 2001, I was unemployed, uninsured, and having a hard time of things. The free clinic gave me samples of Wellbutrin, and I took one. Sometime later that day, I found myself lying on the bathroom floor, afraid to stray too far because I. Could. Not. Stop. Vomiting. I blamed the Wellbutrin, and never took one again.

The next morning I still felt really strange, and had a fever of something like 103. I managed to drive myself to County-USC, which is where unemployed, uninsured people go when they’re really desperate. They ran labs and an EKG and diagnosed me with hypertension and left ventricular hypertrophy, and told me to follow up with the free clinic when I could get an appointment. My blood pressure that day was 145/93 – I still remember that. Prior to that, every time I had had it taken there had been jokes about how it was so low they could hardly believe I was alive.

My free clinic doc was unable to replicate the LVH on the EKG, but my blood pressure was still high. Not high enough to medicate, but high enough to monitor. Then I moved away from the neighborhood the free clinic serviced, and was without medical care (or a job) for a year or so.

I enrolled in school and immediately made an appointment with the student health center, where the doctor was alarmed to see such a high blood pressure reading in someone my age who was not overweight. She sent me to a specialist, who said let’s wait and see before doing anything drastic. I graduated, found a job, and finally had health insurance.

Now that I was part of the world of managed care, wait and see was over. That was when the pills started coming at me. First there was spironolactone, which had some great side effects – it cleared up my acne, it regulated my oddball menstrual cycles – and got my blood pressure down to the 120/80 range. Except. It had the not-so-great side effect of gynecomastia, which in lay terms is “holy hell the most incredibly awful breast pain you will ever experience in your life!”

That was followed by a succession of beta-blockers, angiotensin receptor blockers, calcium channel blockers, alpha blockers, and and angiotensin-converting enzyme inhibitors. Nothing worked, everything gave me side effects, some pretty awful. Edema? Yeah, you never want to have that if you have a choice. Two seemed to have little to no side effects – Diovan, which appeared pretty benign, and Cardizem, which makes me bruise easily. Being the kind of person who likes to experiment, I’ve gone off them occasionally and taken two of them occasionally and found that my blood pressure is the same whether on or off, whether none or double. So, the stupid pills do absolutely nothing.

Last month I managed to get referred to a well-respected hypertension specialist. He spent TWO HOURS talking to me about my symptoms. He did a lot of pulse-taking and listening and so forth and by the end of the two hours, was pretty convinced I was a textbook case of Conn’s Syndrome.

Except it turned out that I wasn’t, as my labs showed that my aldosterone levels were on the low side. The very low side. Which pretty much rules out Conn’s Syndrome.

The doctor took me off all medication – interestingly, my blood pressure dropped considerably within a couple of days – pending further testing. One of those medications was potassium supplements, as I’ve had dangerously low potassium for a long time now. I stopped the meds two weeks ago and had the first round of bloodwork Wednesday, and already my potassium had dropped so low that the doctor called me to make sure I started the supplements again. Because, you know, I could, like, die or something.

The other labs have not come back yet. The test was to rule out – or to diagnose, as the case may be – a pheochromocytoma, which is a type of tumor that secretes excess catecholamines, resulting in a boatload of symptoms that sound like my life over the last 10 years include drug-resistant hypertension. I won’t know until some time next week what the results are. I do know this: as much as I sounded like a textbook case of Conn’s Syndrome, I sound even more like a textbook case of a pheochromocytoma – it’s just so much more rare that it’s not the first thing to rule out. I could be neither; I could have something I’ve never heard of yet.

Right now, all I know is this: this doctor is clearly concerned that something is seriously amiss that he’s running a lot of fancy tests and calling me regularly to follow up. This is both reassuring and nerve-wracking at the same time. For once in my life, I feel like I’m getting the best possible care I could hope for. But I also feel like if something wasn’t really wrong, I wouldn’t be getting it at all. Suddenly I’m medically interesting and a lot of people affiliated with UCLA are concerned about me. It’s a weird feeling, especially after almost a decade of “Just take a pill, honey, and stop worrying.”

And the waiting to find out what’s really wrong? Not easy, people. I’ve known that something wasn’t right for a long time, but I had no idea that it could be something so serious, and so scary. I’m alternately hoping that these tests come back positive, so they can just figure out what the heck it is and get it out and make it stop, and dreading what the consequences of that would really mean. And also dreading that this round of tests will be inconclusive and this whole thing will drag out even longer. I want it done. Over. Finished.

Meanwhile, there’s compulsive googling to keep me occupied. Don’t worry, I’m a trained librarian – I know what I’m doing! There’s not a whole lot out there about pheochromocytomas, but as usual, the best information I’ve found has come from patients themselves:

Pheochromocytoma Support Board on Facebook

Pheochromocytoma Support Group on Facebook

Pheochromocytoma Support Board Forums