Tuesday, June 26, 2007

Its a little late to be reading this article

Time Magazine April 22, 2002. The Cover reads "How Medical Testing has turned millions of us into....Human Guinea Pigs" Fortunately, Time's picture of the most horrendous offender, a Doctor McGee, looks nothing like my study Doctor - what a relief. Turns out Dr McGee "was a good surgeon and a decent man". Apparently he really believed that the study drug he was dolling out was a cure for malignant melanoma. The good Doctor didn't actually want to "run a study", but to "administer the drug" BIG DIFFERENCE. Worst yet, the university review board let him get away with numerous screw-ups. It wasn't until a nurse blew the whistle (the nurses know everything). An independent audit review found deficiencies "so severe that it is beyond the scope of this report to advise corrective actions". Here's the rub - 12 out of his 94 patients fought to keep the trial going. They loved this guy and wanted to goods. Talk about hope.

So where am I in this thinking? Given the risks of ingesting an unproven chemical for the next three years, one would think that I would have really done my due diligence on Dr. Lee (my study Doctor). And I made a minimal attempt. But really, I knew that if I liked the nurses, I was in. They remain our greatest protectors. Not the regulators, but those individuals who are doling out the pills and taking the fluids. If you get a good one (like my Lovely Lorie) you are golden.

Don't get me wrong, I know strong regulatory oversight is critical to insuring that such a large system is working. But as often as there are screw-up Doctors, there are golden nurses. I'm counting on the Lovely's of this world, we really need them. That's where my hope comes from.

Tuesday, June 19, 2007

But will Tolvaptan get her out of Jury Duty?

I'm in. After a week on the "high dose", I'm certain that I have the Tolvaptan. What a difference a little hope makes. Hope for the future - no dialysis, no transplant....and hope for the present - wean myself off the blood pressure medicines. That stuff keeps me down, literally. At my high dose of ACE Inhibitors, I'm often looking for a chair......and the mental fog is astonishing. My friends have been very patient with me, repeating whatever they just said as if I had Alzheimer's, because my drugged brain was unable to accept the info. I WANT OFF THAT STUFF.

Now, I could have taken steps to turn my body into a high blood pressure fighting machine - cardio trained heart, lithe muscles, and a digestive system that only accepts low sodium/antioxidanted foods grown locally. I could have done it then, but what was the point? My gems were shooting off so much of the high BP hormone that I gave up. Let the chemicals do the work, if I'm going to feel like crap I may as well enjoy a few chips and sushi.

That was the lifestyle I choose, but it wasn't much fun. I had to pace myself, in the evening my energy level was so low that I needed to decide what tasks to do each day, and exercise wasn't usually at the top of the list. No, a nap didn't help, the fatigue was relentless. And the YAWNING! So impolite to hold a conversation while trying to suppress a unsuppressable yawn, people thought that they were boring me. I couldn't help it, it was the drugs yawning!

Now I'm trying to change, let my body evolve to its new state: Tolvaptan, exercise, water and no sodium. What a life.

Thursday, June 7, 2007

She's gone mental

A week of Tolvaptan, I think. My rings spin around even though I discontinued by diuretic, a sure sign? I've been very hesitant to accept that I received the prize. While I may be optimistic, I hate to be disappointed and I'm just not 100% sure. I've always drank gallons of water, I'm always thirsty and peeing, its just my nature. So every time I was thirsty over the last week I've wondered - is it the Tolvaptan talking? Today I go in for the "medium dose". I'll know with in 24 hours (or did I say that last week?). Mental. And the mental energy that has gone into this week's speculation is outrageous. I wish I could harness it and offer those BTUs to some energy utility to replace my carbon footprint. Talk about GREEN.....