Friday, October 16, 2009

She's back.

Missed me?
I decided to ignore this annoying aspect of my life by not blogging for the past year. I have to say it was a relief. I've got a lot going on .
I'll be done with the trial in May of next year. I was a bit disheartened this spring with my MRI results and was hesitant to post, as I would never want to discourage others. And lets face it, I shouldn't be seeing my MRIs. I should be blissfully pill popping for three years awaiting that final grade. Which is better? Discouragement or results anxiety? Of course I have no way of knowing is my results are considered a success or failure as progression of this disease has never been measured via MRI cyst count. So we really don't know if progression has been slowed significantly or not at all. My MRI showed a doubling of cysts on one kidney and a smaller increase on the other. So is Tolvaptan working on one? No one knows. Just like the famous quote about the movie business - "nobody knows anything". You just can't tell if a film will be successful.
I'm meeting with a guy from the PKD foundation at the end of the month. Maybe I'm just misinformed. Wouldn't that be great? Maybe he knows.

6 comments: said...

Julie-been following you on MyYahoo and grateful for a new post. I just finished my first year in August (and am VERY certain I'm on the placebo). My study doc said even she didn't get my MRI results (which may or may not be true). Not that it matters much in my case. But good or bad, it's interesting to hear. We all have very high hopes for Tolvaptan. I wonder how long one has to take it before it begins to work? Even if it slows down the cysts, I'd happily take it the rest of my life.

Will be interested to hear about your meeting with someone from PKD (credentials?) regarding the study. If nothing else, at least there are several other studies going on now too.

PKD tri-state walkers will be featured on CBS Early Show this Monday! We need all the press we can get.

Looking forward to future blog posts. Sandie S, CT

Julie B said...

Thanks Sandie, congrats on the press coverage for the walk. I'll let you know how my meeting goes. And to all others, go to and donate. Just do it.

Andrea said...

Hi, I was diagnosed about a week ago and found your blog on the pkd foundation website. I'm looking for people getting through this disease to see that it can be done...I'd love to know how the Tolvaptan study is going. Please post soon!

Julie B said...

Andrea - Welcome! I'll try to post this week but have heard "promising" things - as in slowing of cyst progression. Seems to be working for me on one kidney - and you know we only need one.

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