Progress report.

Blood pressure at the nephrologist’s office today: 130/80. That’s dead-on normal, people! I haven’t seen numbers that low since 2001. He even checked and double-checked. Heart rate was 80, down from an average of 112. Waiting on labs for potassium but I’m sure it’s going to be just fine since I have no symptoms to tell me otherwise. Potassium is up to 4.5, which is the highest I have on record (with records going back to 2003).

I’m going from weekly monitoring to bi-weekly, and that will likely end soon. In about three months I’ll have bloodwork done for aldosterone and renin, more to satisfy my curiosity than anything else.

My nephrologist considers me “cured.” Me, I’m still proceeding with caution before making any such proclamations – I think I’ve done a bit more reading than he has on the topic and I know that time will tell. If my numbers look as good as they did this morning five years from now, then yes, I am “cured.”

~ ~ ~

Regardless, it’s a very strange feeling. The pain from the surgery still hasn’t gone away – I still can’t drive, and sitting for more than a couple hours is pretty uncomfortable – but if I didn’t have that pain to remind me, it would be as if I had never been sick in the first place.

I’ve spent 9 of the last 10 years of my life misdiagnosed with something that I did not have (essential hypertension), and being treated accordingly. Two years ago, I was on seven (seven!) different medications, none of which did a damned thing to help me (and some of which, paradoxically, increased my blood pressure) and was fighting the medical establishment, trying to find someone who would believe what I already knew – that I had something else wrong with me and that the hypertension was secondary. I don’t know how I knew it at first; sometimes we just get a sense of these things.

By mid-2010, it was clear that I was losing the fight. Between the palpitations, arrhythmia, sudden potassium crashes, and headaches, I was pretty certain that I was going to die before I could get anybody to listen to me. And just like that – just when I was about to give up – I found my primary care doctor, who, like myself, had no idea what was wrong with me but knew with absolute certainty that it was *not* essential hypertension.

That was last December. Within the month, I had been referred to my nephrologist, who diagnosed me – again, instinctively – within five minutes (then spent the next three months doing every test possible to be absolutely certain he was right, which he was).

In less than a year, medically speaking, I’ve changed identities three times: for the first 8 years after my onset of illness, I was the difficult and noncompliant patient, the one who refused drugs and complained of side effects and demanded tests. The one with really strange lab results that made no sense. The one for whom conventional treatments did not work.

Once I was diagnosed, I became a medical curiosity – the patient with an illness so rare* that in med school, future doctors were told they would never likely see in their entire lifetime of practice. While this was interesting and the attention was welcomed after being dismissed for so long, it felt like forever before any action was actually taken with regard to treatment. And so much of this past year has been spent waiting, on hold.

And then before I knew it, I was scheduled for surgery. That was less than two weeks ago, but now? Theoretically I don’t have an illness any more. Whether or not all the wacky abnormalities that have been attributed to my illness will clear up still remains to be seen, but the big ones – the ones that could have killed me – seem to be a thing of the past.

* I remain convinced that hyperaldosteronism is not rare at all; it’s just underdiagnosed. I think I have enough to say on the subject that I could write a whole post on it – and I probably will! – but for now I’ll keep it simple: a $300 blood test that rarely gets ordered could probably save a lot of lives. Until the aldosterone-renin ratio screening becomes a standard part of the workup in EVERY patient with hypertension, we will never know just how common this “rare” disease is.

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