Those mighty mutant mice

Imagine, being created to be destroyed. That is the plight of the lowly PKD lab rat/mice. Once those PKD gene (genes) were identified in 1994/1995, PKD research took off. Why? Because some lab somewhere could infect the mice with those nasty genes and presto! PKD kidneys. Let the games begin.

I've never met one of these creatures but I have seen pictures of their kidneys. Pictures of the "Before" -bulging, bumpy PKD kidneys, and "After" - adorable, pink, solid, post Tolvaptan kidneys. A GREAT RECRUITING TOOL. It sold me on the stuff.

I'm sure the PETA people would be appalled. And it does give me pause, should we create/destroy these creatures just to further my life? Biblically I think we're covered. I'm not sure about the other religions, it might piss off the Hindus or the Buddhists, I'm ignorant of their theology. What about the Muslims? Where do they weigh in on this? Secularly, I'm thinking that we're forwarding the "survival of the fittest" aspect of life (if one takes their moral direction from Darwin). Keeping this species going, even when some of us have defective genes. Lets fix the less fittest. Isn't that what we as humans do? As civilized creatures we take care of our weakest. Our herd doesn't leave them (me) lying in the dust. But our path is paved with the lives of these small creatures, these PKD mice.

I think I'll be nicer to the dog.

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.

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.

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.....

Name your poison

Which one do I want? Seem silly, doesn't it? Taking a sugar pill for 3 and a half years. Today I get the Tolvaptan, or not. I should know within 24 hours whether it is the real deal. I'm somewhat grateful that this drug's side effects are visceral, I really hate not knowing. When I was a kid I used to unwrap my Christmas present (I knew where Mom hid them) just because I couldn't stand the suspense. This should bring rounds of peeing and ridiculous thirst, or not.
But which one do I want? I really can't answer that. Seems enough right now just to participate, be close to the heat. I actually feel like I'm doing something to fight this disease and that is the gift.

I'm convinced they rounded up.

I'm not excited any more, Lovely Lorie relayed the MRI count - 180 cysts on the right kidney and 220 on the left (my original ultrasound only spoke of "multiple" cysts, one the size of an orange). Plenty to qualify for the Tolvaptan study, hard to hear. I really wanted Lovely to tell me that mistakes had been made! That the cysts were on the outside of my gems, not inside. Instead I got numbers. And when asked, Lovely in her most professional and compassionate voice replied, "There were several participants in this Tempo study with many more cysts than that......" I'm sure she was lying. IT WAS HARD TO HEAR.

It took two years and I'm in. As the risks and reality of participating in a three and a half year clinical trial materialized before me, I got grumpy. I even had to yell at my kids (we no longer have a cat so I has nothing to kick). I suppose that facing one's demons is like grieving. Individuals are just that, reacting differently to facts, diagnosis, numbers. My bravado has deflated and I'm terrified. Maybe it isn't bravado but an inexplicable knack for plunging in and waking up later. I woke up grumpy. And then I remembered that I'm not supposed to drink caffeine, so now I'm even grumpier. On top of that, if I'm not careful I could have a really, really long hangover.......
Enough, I'll be fine.
I'm in.

The excitable nature of an optomist

OK, so I lifted that line from Michael Chabon, so what? He was just pointing out the obvious. I also admit to being an optomist, and LUCKY. Think about it - I was diagnosed with PKD (right place) at a time when research was funded at a historically high level and was showing promise for the first time (right time). I am genetically inclined toward investigation and have the personality to charm my way into situations above my station - like the time I elbowed my way into a cab with a principal PKD researcher from Harvard so we could "chat" on the way to the airport (LOVED that guy). Is that lucky? I think so. Did I make my own luck? Sure, I attended the PKD conference in the first place, heard him speak, had the nerve to introduce myself and inserted myself into this guy's space. I was excited, and our discussion confirmed my optimism.


And your point is? I'm really blogging this as a deversion because I can't stand waiting to hear if I qualify for something I've been waiting TWO years to get into.

I will know this week, and I'm excited. That would be me.