Thursday, October 4, 2007

How am I doing?

Good question. September got in the way, I slipped into the back-to-school drowning pool and needed October to throw me the life preserver.

How am I doing? Exceedingly well thank you. If the question relates to results, I've got nothing for ya. Results in this study are determined by kidney volume. Mine will be measured again on June 2008. I tried my best to worm some info out of Lovely Lorie last week during my four month visit but she was giving nothing up. Nothing. No news, damn. My creatine level is irrelevant at this point. I'm normal and not tracking for failure in the distant future. Yes I know everyone is different but my kidneys are not that big, so really, I don't think they will blow in the next few years.

Symptom wise, no problem. I've always been a huge water drinker, we have a Arrowhead Water dispenser in the house and I now find myself guzzling half full drinks that the kids have left behind. I also grab the ecologically incorrect water bottles on my way to anywhere in the car. Problem solved. Since I don't work I can easily go as often as I want without significant disruption (not alot of buckles or embarrassing looks from co-workers). I've heard that some study participants cannot tolerate these side effects, but I'm pretty sure those individuals have never been pregnant. Yes boys, this means you. Suck it up, it may be worth it in the end.

I really do have to watch my hydration levels, especially when I want to enjoy some vino in the evening. I can get a REALLY BAD hangover on just two glasses of wine if I haven't grazed on all those half filled water glasses. One weekend the dispensor broke and sure enough, Sunday morning I felt like I had spent the previous evening gorging on jello shooters. After just two glasses of wine, not pretty.

So there you have it. I'm doing fine.


Anonymous said...

Nice of you to share!

Anonymous said...

("How am I doing?" "So there you have it. I'm doing fine.") I hope so, but not that convinced.

studioriley74 said...

Thanks for publishing this! I am a 33 year-old male in Long Beach with PKD. I've seen lots of family members deteriorate and perish because of this disease. I think about my kidneys all the time and think my friends don't understand why I worry. Congratulations on getting into the trial. I received the letter from Mayo Clinic but never got any calls back from the place in Riverside.

Anyway, thanks. I'm RIley Wilkinson.

CresceNet said...

Gostei muito desse post e seu blog é muito interessante, vou passar por aqui sempre =) Depois dá uma passada lá no meu site, que é sobre o CresceNet, espero que goste. O endereço dele é . Um abraço.

Anonymous said...

Can anyone translate?

Anonymous said...

Hi Julie

Thanks for your blog, I'm 34 years old male and got diagnosed with PKD almost 12 months ago. The trouble is my kidneys have deteriorated 15% over the last 12 months and are now operating at about 65% level. At that rate I'm facing renal failure in the next 2 to 3 years. Anyway, I've been invited to join this TEMPO 3/4 study but am still undecided, my wife and rest of family are against it.

I would love if you could get in touch with me on or through facebook.

Kind regards

Radek Mierzejewski
Sydney, Australia

Anonymous said...

Hi Julie,

Any news? June '08 is just on the doorstep now.

Please let us know the updates!