Wednesday, April 01, 2015

Hydrocholorizaytoiuwoiet2tkadn and super powers

I'm pretty sure the title of my post is the name of my new medicine.  Or, you know, pretty close.

It's a very long name for a very tiny pill.  Put simply, it's a water pill.  My neph prescribed it to help lower my diastolic numbers without having to drop my systolic numbers too low.  Or maybe it's to drop my systolic number without dropping my diastolic number too low.  I'm not sure.  There are altogether too many tolics in my life.

Put another way, it's a pill that makes me pee.  A lot.

It's hard not to have a strong relationship with urine when you have a kidney disease (and hard not to read about urine when you are on a blog about kidney disease.  If pee makes you queasy, you might want to go watch some cat videos, or something.  Although cats pee on EVERYTHING.).  It sort of comes with the territory---monitoring urine for color/odor changes, making sure that urine samples are "clean catch" samples, and the oh so appetizing jug 'o pee in the fridge when you are collecting a 24 hour urine sample.

The one perk of having PKD is that my urine output has always been, well, pretty low.  One time I gave so little urine to my neph for a 24 hour urine collection that she said that if she didn't know it was me, she would assume that I did it wrong.

I call this a perk because it means that I never have to find a bathroom.  The usefulness of this skill was brought home to me when I traveled last year with my extended family, particularly my older sister, who ALWAYS has to pee.  She said that everywhere she goes, the first thing she looks for is the bathroom.  She can't get through a movie without having to pee.  Twice.  It sort of blew my mind how often she had to pee, and I realized that having to pee only twice a day was sort of like my super power.

And now I have my kryptonite.

This pill makes me pee all the time.  I mean, all the time!! I even had to leave a movie the other day in the middle because I had to pee.  What?  Me, missing a movie to go to the bathroom?? Never!

Granted, I was drinking a large Diet Coke at the time, so I had the extra added bonus of another diuretic, but I'm usually quite good at being able to hold it until the end of the movie.  Having to miss part of whatever movie I was watching made me feel

(I'll admit that since I can't even remember what movie I was watching, I probably didn't miss much.  Still, it's the principle, people.  It's the principle.)

And I also hate that I have to be on another med.  I know this disease is progressive, I know that keeping my BP low is key, and I know that all of this is important, especially now that my GFR is hovering around 50 (which, for those who aren't obsessed with medical lab reports, is not a good GFR.  It's a lousy GFR.  Totally crappy.). But every time I'm reminded that this disease is progressing, it makes me swear under my breath a little and I go sit in the car and call my husband and cry a little, and then we go eat lunch together while he tells me that I'm wearing the"I hate PKD" face.  (I apparently also have  a stressed about my job face, a worried mom face, and a stressed about people at church face.  I guess stress makes my face uber expressive.)

But now when we eat our I Hate PKD lunch, I'll have to pee afterwards, like a normal person. Oh how the mighty have fallen.


Anonymous said...

Hi Heather!

That's my first time in your blog. Congratulations for it!

Have you heard about a medicine which the name is tolvaptan? It has just gone on market after some good results in lab.

Best regards,


PS. I have PKD and I am from Brazil.

Shirley said...

Hi Heather
I'm enjoying reading your blog. I wanted to start one too so I'm inviting you to visit me too. I'm ahead of you Stagewise. I haven't had blood tests since July but I just know I'm going to be Stage 5 soon. I've been at Stage 4 for way too long.

On my blog I'm going to be sharing kidney friendly recipes and a bit about what I'm doing/how I'm doing.


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