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

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