Saturday, August 14, 2010

Episode 2: Polycythemia on my Mind

So you'd think having lots of red blood cells would be a good thing--extra virility, right?  Kind of like Viagra for the blood?

Apparently not.  A few months ago my hematocrit--i.e., red blood cell count--began creeping up.  Yet one more symptom in my fifteen-year battle with chronic disease.  I won't go into all the particulars now, but future shows will certainly discuss primary aldosteronism, an adrenal disorder, and hepatitis C, the kind Naomi Judd had when she quit her singing career in the belief she was dying.  Yes, I'm blessed with both of these as well.

But today it's polycythemia on my mind, and blood tests happening out there right now in blood lab world, as mine had to be sent away because they're so specialized.  (I live in the sticks.)  I'll learn the results on August 24.  In the meantime, I can't help but search for answers on the Internet, considering I am a medical librarian, among my other job hats. 

Possible causes:

Polycythemia Vera -- This is primary polycythemia, meaning the condition is not caused by anything else other than its cute little self.  In this case, the bone marrow goes wacky and a mysterious cloned cell starts to muck up the works.  Literally.  Too many blood cells equals muck.  Blood that's sluggish, easily clogging up and leading to strokes, heart attacks, and thrombosis.  Fun!  In fact, PV is classified by some as a malignant blood cancer, as cancers occur when incorrect cells begin to proliferate, a perfect description of PV.

And what's the cure?  Well, there isn't one.  Instead, people with PV get their blood let.  You know, blood letting, what physicians used to do in the old days when they couldn't figure out what else to do.  Fortunately, leeches are no longer used for this purpose.  Instead, should this prove to be the culprit, I'll get to have my blood taken pints at a time until the hematocrit goes down, and then as needed.  The treatment isn't perfect, and it doesn't sound like a whole lot of fun, because apparently you can end up feeling pretty weak and sick anyway, but it does help reduce the chance of stroke or heart attack.

Oh, and if phlebotomy doesn't work, there's a drug you can take for it.  Well, if you want to.  You can't touch it with your bare hands because it's so toxic, and if you're on it for a while it will quite likely give you leukemia.

Secondary Polycythemia -- This is where things get even more interesting.  Polycythemia can be a sign of some other condition.  Unfortunately, the conditions polycythemia may be a sign for tend to be really bad things, such as renal (kidney) cancer or liver cancer, among others.  Now, I mentioned above that I have hepatitis C, which can cause liver cancer.  AND my mother died of liver and pancreatic cancer in her mid-sixties.  And, hey, I'm fifty-one, so I can no longer claim the health shield of youth (though you'd never know it to look at me, Baby!) AND I just had my kidneys checked out, so I know it's not them.  AND I have other symptoms of liver cancer, including yellow poo.  (Hey, I know that's gross, but no one knows who I am, so I'm going to be honest here.) 

Other causues of secondary polycythemia exist, and hopefully mine is attributable to some correctable problem, such as dehydration due to diuretics, i.e., water pills taken for conditions such as hypertension.  Which I also have except that it's controlled via, you guessed it, diuretics.  So that would raise a further dilemma:

Until my primary aldosteronism was diagnosed, my blood pressure was totally out of control.  I mean, for an entire semester of teaching--and my last full-time semester of teaching, I might add, since my compassionate employer decided to fire me for negligence when I couldn't teach within a week after a hospital stay in which cardiologists told me that I was dying (okay, exaggeration:  they told me I was in heart failure and had probably had one or two mild heart attacks) and subjected me to two invasive heart procedures and a painful muscle test for my twitching muscles before figuring out I'd been overmedicated by keeping me on hypertension medications after I'd started the treatment that prevented the hypertension--forgive the long digression, but it still rankles, dammit, not only the crappy care (like I said, I live in the sticks, but it could happen anywhere these days) but losing my job over it--so, as I was saying--

for an entire semester of teaching my blood pressure ran 200+ over 120+, the diastolic (lower) number even reaching 135 a couple of times in the emergency department.  I might add that I continued to teach during that semester and got excellent evaluations from my students despite being so weak I had trouble walking up the one flight of stairs to my office.  I do have a strong work ethic--getting sick, though, sometimes interferes.  My bad?

Ah!  Another topic for another day ... our society's pathologizing the sick.

Anyway, all the king's pills in all the king's land could not reduce my hypertension for thirteen years, culminating in that wonderful last year of stroke-level blood pressure.  And then:  miracle.  Johns Hopkins Medical Center and a very sexy Italian endocrinologist.  An NIH clinical study with a very sexy Greek endocrinologist.  Diagnosis:  Primary aldosteronism!  Not "essential" hypertension, the label docs had stuck on me all those years, medspeak for "We don't know what's causing it."

And what treats primary aldosteronism?  One very specific diuretic--spironolactone.  So, even if it turns out I'm dehydrated by it, I don't want to go off the diuretic that controls my hypertension, keeping it comfortably around 120/80 nowadays.  I don't want to go back to stroke-range hypertension. 

But I also don't want to have blood so thick that I stroke out.  In other words, joy as usual in the world of the chronically ill. 

And, fortunately, another pill could work with the aldosteronism, and I don't think it's a diuretic.  So maybe this will all have a happy ending.  And even more fortunately, these days I'm working full time, slowly pulling myself up out of the hole my finances dug while I was unemployed and too sick to work.  Yes, I often come home and hit the bed like a slab of meat.  I do have to take a sick day now and then.  But I can work and I do, and I will as long as I possibly can.  This past Friday, my boss attended the funeral of a friend--a woman who, at forty-eight, stroked out and died.  Hell, I'm living on borrowed time.

So, what can I say?  I've got polycythemia on my mind, and I ain't just whistling Dixie.

                        

For more banter about polycythemia, see the Annals of Polycythemia at Cancer Bitch's blog:  http://cancerbitch.blogspot.com/.  Also, don't miss it if you have cancer, particularly breast cancer.  Hell, it's just good reading for anyone.

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