Thursday, May 31, 2007

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.

Friday, May 25, 2007

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.

Wednesday, May 23, 2007

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.

Sunday, May 20, 2007

Tricky Business

40 minutes in that tube, that miraculous brownie box of the 21st century, the MRI machine. "Take a breath and hold" - I must have done that 30 times, trying to get the perfect picture of my jems, my kidneys. I really tried to behave, knowing that if I could provide the perfect pictures, the guys in Massachusetts would Pick Me! Pick Me! Arms above my head, gliding through imagined tropical waters with each breath, I can swim through this! Pick Me! Pick Me!

I won't know for two weeks. The pictures get shipped to Mass and then analysed by some research genius as to size and number or cysts. Lovely Lorie said that a gaggle of siblings were trying to get into the study, competing for the greatest number of cysts. I like that. Humor above all else.

Later that afternoon, the study doctor and other research tech (Lovely had the day off) said that I was the first person to describe to them the arduois MRI process. Leave it to me to be the biggest whinner. But I was interested in knowing how people who were sick or out of shape could handle such torture? I had two years of pilates training and could actually freeze up my midsection like a slab of granite, speaking to each can in my 6-pack and willing it to rigormorph (just know that my 6-pack lies under a mound of flab so don't think I am bragging). How did the other patients manage it?

Next time I will bring something to hold in my hands (which are raised above my head in side the tube). I will tell the Tech that I don't need to rest in between the 18th and 19th "Take a breath". I just want to power through it. Lets get my time down, I want a personal best of 38 minutes, maybe 37 minutes in the tube.

Lets hope I get the chance.

Wednesday, May 9, 2007

Obsessed

I'm reading the chat room posts at least three times a day. A test participant wrote that the Tolvaptan had caused her to lose her appetite. It is a miracle cure! Another participant posts that she hasn't had that effect, It isn't a miracle cure! I'm looking for volume here, I figure that if enough participants report this side effect then it really exists. Now I really want this magical elixir.

By now I should have been MRIed (that is a good word) and sweating about the size of my kidneys. These girls need to be big enough to measure plenty o'cysts, if not - I'm out. The Lovely Lorie (aka Gatekeeper) has worked diligently to secure my records from my neph. No records, no MRI, no elixir. Four weeks, no records. Lorie has identified the culprit, an overworked nursing assistant who claims she mailed them. Perhaps she did, perhaps she didn't realize that I can't get into this study until those records are received evidencing a diagnosis of PKD. That this is my life we're talking about. The intrepid Lovely has instead received only four pages of notes/labs. She proclaims - We have ENOUGH! Within those four pages have some slight reference to a PKD diagnosis. They should have just called my witness, he would have vouched for me.

I can now schedule my MRI.