Mark and Vinny's Blog

Well, it’s been about a month since my last blog entry. "Weren't you the one who said bloggers should blog weekly?" Guilty as charged. In this entry, I'll catch up on medical stuff…

On Thanksgiving, I started my medical leave from POZ to focus on my various health issues. Before I could start my yearlong treatment for hepatitis C (Roche's Pegasys with ribavirin, now scheduled to start in the first week of January), I had to get my polycythemia under control -- and this turned out to be a much more serious deal than I had thought.

As I’ve written before, polycythemia is a blood condition that is the opposite of anemia -- I have too many red blood cells in my blood. That’s a problem because it makes the blood so thick that the heart can’t pump it and it can’t get through all those micro-capillaries to deliver oxygen to the muscle and brain.

Polycythemia can be caused as a “secondary” result of a hormonal or chemical imbalance (for example too much testosterone) or as a direct result of an underlying problem, such as a bone-marrow disease. Before we could start treating the symptoms, my hematologist, Randy Levine, ordered more tests including some high-tech nuclear medicine tests at Lenox Hill Hospital.

Actually, the test itself was a little anticlimactic. They took out 300 cc’s (about a cup measure) of whole blood from one arm, added a radioactive compound that would tag the red blood cells, wait a while, add more compounds and then infuse this back into my arm and then drew off samples from the other arm after exactly half an hour.

I’m used to being a biohazard but now I was going to be radioactive (for a month) and they had to issue me a special card (pictured on the right) to show to the homeland security police when I would set off George Bush’s terrorist detectors. Given my activist background, it’s somehow fitting that this diseased pariah can now set off alarm bells and trigger a swat team at Grand Central just because of my blood.

The tests didn’t tell us much. Polycythemia is notoriously difficult to diagnose. For now, we’ll just assume that I’m one of those 1-in-a-million people who gets polycythemia vera. It’s not curable, but it is treatable, so now we could begin treating it.

Someone asked me if I was freaked out about this diagnosis. I said it didn’t really matter if I was living with two or three deadly, terminal, incurable conditions, I had every intention of NOT dying from them any time soon.

Although the diagnosis was very high-tech, the treatments aren’t. For the last few weeks I’ve been getting twice-weekly bloodlettings -- sounds like something they’d do in the seventeenth century. In the twenty-first century they call it therapeutic phlebotomy. Twice each week I have to be admitted into Roosevelt St Luke's Hospital as an outpatient and then it’s just like donating a pint (half liter) of blood.

I even get juice and cookies and a big “I donated blood” colored bandage. Of course, instead of going to the blood bank, part of me gets unceremoniously disposed of in this industrial strength biohazard disposal unit.

I’ve now bled out about four liters of blood, and my hemoglobin has gone from a dangerous 21 down to 16.3, which is the very top of the “normal” range, and I’m down to once a week. My blood pressure is also normal range. I can think more clearly. I’ve only had one migraine in a month. I’m still sleeping all the time, but it sure is nice that so many of my problems and symptoms were from the polycythemia and not the hepatitis C.

I was so happy with my progress that when I saw Randy, my hematologist, I said “I’ve been extra cautious, like you advised, and have done no aerobic exercise, no lifting, no climbing and basically have been a couch potato because I didn’t want to have a heart attack or stroke from my blood being too thick. I’d really like to get back to they gym – slowly at first – to regain some strength and health.”

Randy surprised me with “Mark, you’ve been VERY PRUDENT and even though your numbers are better, I want you to have a full cardiac workup and clearance before you return to even light exercise.” So this Thursday, I’ll add a new member to my medical team, Pedro DeArmas, my cardiologist. I sure hope he clears me for more activity... At the very least, I want to push to start back with Taoist Tai Chi.

In writing this up, I JUST remembered that I’m also taking one baby aspirin daily because of the polycythemia to help thin the blood. Unfortunately, I forgot to add it to my list, so I didn’t pour it into those little plastic drug bags that I set up for the month when I made them last week. OOPS, I missed the last six days. I just took one and I'll add them in. Vinny and I have GREAT drug compliance because I’m so organized (or obsessive-compulsive). I hate screwing up on the dumb stuff.

In a few days, I'll post a social update covering the screening of our HBO documentary, Positively Naked, some celebrity fan mail we've gotten from it, and even a video clip of my leading the POZ holiday party in a rousing chorus of "You're a Mean One, Mr Grinch/Bush".