Anything but THAT!

Admittedly, I am a bit of a highbrow. When I first heard of Dr. Lee's Tolvaptan trail center in Riverside I blanched - UCLA, USC, even Irvine - but Riverside? In this city of 12 million why did the study Dr have to be from Riverside? I googled Lee and the only thing I could come up with was a letter from the Feds citing Medicaid fraud. Figures.
Soooo I spend the time reading the fraud documents and found that maybe the Feds were a little hasty, after all - turns out that Dr Lee's nurses adamantly denied the Dr's wrongdoing, these gals defended his honor citing faulty paperwork not shoddy practices. And we all know that the nurses are the one who KNOW. I forged on......
I was a bit nervous on the drive, as you can imagine. Heading East of Los Angeles, and more East, and more East. Riverside. Of course I made the wrong turn up a side street, as I passed check cashing stores covered with graffiti and drive-thru tobacco outlets I tried not to panic. Wrong street! My relief at discovering my navigational error was visceral. Of course his office couldn't be here, its round the corner next to that massive, newly constructed hospital over there. Silly girl.....It would be fine, Riverside is a wonderful place, full of "cutting edge" medicine types. Then I say the sign....the hospital sign...it was a KAISER hospital. Groan, all was lost.
In case any of you haven't heard, Kaiser was forced to close two of its transplant centers in northern California due to sheer incompetence. What Kaiser put those patients through was criminal, and the Federal oversight of their operations was disgraceful. Fortunately, the intrepid LA Times pulled records and discovered what was going on and had the centers shut down. That is how bad it was.
Turns out Dr. Lee wasn't from Kaiser. Turns out he had applied for the study three years ago, and was accepted as one of the two centers on the West coast. Turns out he just got his Law degree, just because he could. Turns out I liked him and the lovely Lorie. I really liked them. I'm in.

I need some water

This is harder than I though. Today I'm going to my first appt with the study doctor. My brain has been occupied by the Tolvaptan impulse, I can't think of anything else. Should I? Why should I? and can't someone just make this decision for me? I'm needing kind words from loved ones, they are not exactly forthcoming. I need my doctors to spend a little time on this, it didn't happen.

Guess I'll have to get my own water.

Useless

I tried - it was the 3rd time I had spoken to my neph about this Tolvaptan trial. Two weeks prior to this appointment I even sent the guy an e-mail with links to info sources. I asked him to review the info so that we could speak of it at the next appt. He said he did read the e-mail but (and this is rich), doesn't have any info on the drug. As he spoke I knew he was useless - that another layer of security had vanished. Blah Blah Blah - "This is cutting edge" - Blah Blah Blah - "I'll read the stuff the company sends me" - Blah Blah Blah - Why can't he just admit that he doesn't want to take the time to evaluate the info? It is out of his realm, so admit it.

I'm on my own again. I don't like this.
Lucky for him I still think he is an amazing human being, just LIMITED.

I'm in

Got the call to set up the initial appt. Now I can panic.

Here is my first question: This drug interferes with the body's ability to respond to the hormone that allows our cells to retain water. Does that mean I will have a 3and a 1/2 year hangover? (This is what a hangover is - dehydration) and if this works, does that mean I'll have a lifelong hangover?

Shut Out

I feel like I'm applying for college. Get the app in (med records), tout your assets (I have a creatinin level of .8), get your recommendations in (my neph appt is on Wednesday) and GET IT ALL IN ON TIME. But in this case we don't know what the deadline is. "Lovely Lorie", the administrator at the Southern California clinical trial site, has said that there are 50 slots - "no problem getting in". Lovely does have a nice voice on the phone (hence my "Lovely" moniker) but is she the one, the admissions czar, THE one who can anoint me with the elixir? Or is she a clerk, doing her job.

My experience with the national registration line has been ridiculous. These operators present the great information wall to the diseased public - "yes, we have you in the system" "yes, we're going to send out notices" "no, we don't understand the 19 month delay". Never got the notice....only reason I know about Lovely Lorie is from a post on a PKD forum. Last week this forum also reported that Otsuka (the drug manufacturer) won't be having trials in Northern California at Stanford or UCSF because "they have enough participants". Shut out in Northern California.

Wish me luck, pray that I won't be in the same boat as the 15,000 students that got rejection letters from Duke - because at this point, it is my first and only choice.

Why the military reference?

"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.

Can I get a witness?

St. Patrick's Day 2007 - Everyone has their own physiological land mines. Sometimes these internal bombs can be seen, felt, discovered. Most times they can't, an errant gene, a hardening artery. I just happen to know my mine, my mines. I have two, aka my kidneys. I was diagnosed with Polycystic Kidney Disease in 2002. Yes, it rocked my world. More on that later.

Today, I'm trying to enter a clinical trial. "Tolvaptan", the first drug that has show the promise of stopping the cysts that are wreaking havoc on my kidneys.

I fill out my name on the medical release form. The first small step. Date of Birth, that's easy, but I flashed on the next logical question, date of death. Whoa, slow down Julie, you're losing it. That is a different form. Take a break. Let my mind massage a scenario about how I would argue with my "neph" (Nephrologist - kidney doctor) to release my medical forms. Let's just call. The Dr. Neph's office manager flatly stated "What do you want the forms for?" As if it mattered to her, those forms represented my life, my health, why did she want to know? Before those forms could go out, I needed to sign a release. Hold the phone, the release says I need a witness, a second signature on this critical document.

Can I Get A Witness?