Saturday, July 01, 2006

A new vocabulary

DH and I often say that education is really just about vocabulary. He can't read the journal articles I read because he doesn't know what an oropharynx is. I can't read his stuff because I don't know what Newtonian Cosmology is (And, sorry, there is not reference for that). Again, it's all a matter of vocabulary. You have to know the words to figure out what is going on.

I sort of feel this way in regards to PKD. I recently joined the PKD support group list serve, and I'm not sure it's doing me any good. No offense to the people on the list, it's just that they are talking about things that I don't understand. Urea levels, Procrit injections, and a whole bunch of other things I've never even heard of. Up til now, I would have told you that I was doing pretty good on keeping up with my info on PKD. But now I realize I have just barely stepped over the threshold of this world, and there is still a lot ahead of me. And a whole boatload of new words I'm gonna have to learn.

One woman on the list said that she doesn't consider PKD a "deadly disease", and that life after transplant is actually pretty good. Well, that's a relief, because there's nothing like Googling a new diagnosis and seeing the words, "Most common genetic life threatening disease" to ruin your day. But in spite of the optimism I find from everybody around me, I can't help but feel midly overwhelmed at times at all the different stuff I'm going to have to learn to get through all of this. Like I said before, baby steps, right? One day at a time....

I think I'll bring a medical dictionary to my next nephrology appointment.

1 comment:

Jeanne said...

Hi Heather

Like with every other job, the job of takign care of your kidneys comes with a whole new vocabulary - our whole family learned to speak the new language when me mom was on home peritoneal dialysis :o) If the situation in the US is anythign like in SOuth Africa, some doctors still seem to prefer their patients NOT to know what they are talknig about!

And on staying positive - my mom was diagnosed at 37, having put her kidneys through 2 pregnancies and suffering lower back pain since she was abtou 13. But despite this she watched her diet, armed herself with knowledge and maintained her kidney function to the extent that she only went into renal failure 20 years later. And even after that, she had 6 good years on continuous ambulatory peritoneal dialysis - still working full time!