"Syringe soldier", What the Hell is that? It is the impulse to enlist. To join the grunts, those poor infantrymen who are the first fodder on the battle field. Shot at, not by cannons, but with AKA-47 syringes filled with the enemy (enough hyperbole for ya?). At this point the new drug is the enemy, unproven, potentially deadly, but ready to be turned into an ally at the end of a long and arduous application of the scientific model. Before we can align ourselves with this chemical assailant we must determine it's loyalties. WE MUST USE HUMANS. Right out of a Michael Crichton novel.
My Cardiologist looked concerned, as he does when we talk about our respective children (but he never has that look when discussing me). "So many patients want to rush into this, they don't think about the risks, just the newest snake oil being marketed as the cure all". Talk about hyperbole, my radar went up with "they don't think about", a bit patronizing. I dutiful listened as he went on to describe how the drug companies have killed off test participants, how the FDA has become too lax in its oversight and THE RISKINESS of the endeavor.
He then went on to prescribe a new ACE inhibitor to reduce my soaring blood pressure. Raving about this drug, how everyone on the planet should be shooting this with their smoothies in the morning. This stuff will save my life. Geez, I was grateful, but to whom? Not my Dr., he was just the historian, knowledgeable about outcomes, battles, enemies. Granted, he had sifted through all the source material, original documents, archives. But who did the real work to get me there? Some poor medical doughboy in a hospital gown getting poked and analyzed on a chemical level, and then turned into a statistic. Risking their lives for us.
I decided that I wanted to suit up with the rest of them. And while you could say that I have an extreme vested interest in this drug's success, I could have let that other marine take the risk, waited a few more years (Tolvaptan has been fast-tracked by the FDA). After all, I've got a family to raise, three kids under 14. I like my life, love my husband. Why not wait?
It is because of those kids who have a 50/50 chance on inheriting this gene. I am willing to fall on that syringe for them. Lets just hope I qualify for the study.
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I can really relate to your posting. I felt like you. I heard about the phase 2 trial. My father and grandmother both had PKD. I had not been formally tested - I watched my BP and labs, not much else to do but wait and see. I heard about the phase 2 trial and was in the dilemma. Do I get tested or not? Debate, debate, debate. During this time of debate, my 17 yr old daughter had a skiing accident. Fell and lacerated her liver. After the CT scan the ER doc came back and said "the bleeding stopped but man do you have a lot of cysts on your kidneys" My reaction was first devastation. Then came the soldier reaction. I can deal with this for myself but for my daughter - no way!! I called my doctor, got my US and away I went to the phase 2 in Orlando. Now am following the phase 3 protocol with 1 year and 4 months down. Good luck to you as you enter this trial.
Julie
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