Monday, December 29, 2014

HALT PKD, GFR, and Stage 3

I got the official transcript of the HALT PKD study the other day, fresh from the presses at the New England Journal of Medicine.  I was surprised to see that Dr. Steinman was not first author, that it was Dr. Schrier.  I've never heard of Dr. Schrier. I don't know why it bothered me.  It just did.  What can I say, I wanted to be able to point to the top of the list of doctors and say, "I KNOW HIM!"

Clearly, kidney disease has made me prideful about stupid things.

I read through the abstract, and then skimmed through the study.  I have one semester of research methods under my belt, and another semester of statistics, and just had to review for a gnarly test that covered my entire academic career of learning about speech language pathology. All of this means that I was able to understand the study only slightly better than my mother.

Basically, here is what the study said:

1) Combining two different types of blood pressure meds doesn't really do much in terms of slowing down growth of the cysts, which is measured via MRI as total kidney volume.  So taking one pill of Lisinopril is just as effective as taking one pill of Lisinopril and one pill of Telmisarten, the "study drug", which is really just another type of blood pressure medication.

2) Keeping blood pressure low, below standard levels, is more effective at keeping the growth of the cysts down than keeping blood pressure at standard  120-130/80-90.

That part is actually super helpful and super concrete, and gives nephrologists at least something to work with, I think.  It's not like my nephrologist was letting my blood pressure run amok or anything, but at least now there is concrete evidence that aggressive treatment of blood pressure is a good move.

(I love my local neph, by the way.  It had been a long time since I had seen her, and being in her office again was like greeting an old friend. That sounds super weird, I know.  It IS weird.  But so is having cysts growing in your body, so, you know, back off.)

The study results also included my own personal study information (although I still don't know if I was on the placebo or not.  Not that it matters, I guess, since the whole thing turned out to be unnecessary).

(Wow, that sounded bitter.  I'm not bitter.)

(Well, maybe just a little bitter because being in the study was a pain and now it turns out it didn't do anything?)

(It's like when my diabetic sister found out that she had been getting the placebo in her study, and she was upset.)

 (I told her she was a data point, and that's just part of medical research.)

(She probably should have told me to shut up.)

My own personal statistics showed that my GFR is now 54, down from 79 when I started the study 6 years ago, which puts me squarely in the Stage 3 category of kidney disease.

Which means, of course, that I spent the evening googling GFR and Stage 3 kidney disease.

Are you interested in what Google told me?

(Of course you are.  If you weren't, why would you be here, am I right?)

GFR stands for Glomerular Filtration Rate.  Basically, it means how much blood your kidneys are filtering.  There is a complicated formula that involves your creatnine number (the lower the better--if creatnine is leaking from your kidneys, you're in trouble) and some other stuff that I've already forgotten, and then you plug all this stuff into a formula and come up with a GFR number.  And then that number corresponds to a graph of the 5 stages of kidney disease which tells you just exactly how screwed you are.

Turns out, I am officially moderately screwed.

I am squarely in the Stage 3 portion of the graph, which is characterized by moderate damage to the kidney.

I use the words minimum and moderate in my work all the time.  "Client will produce target phoneme with minimum to moderate cuing".  "Client will attend to task for 5 minutes with minimum to moderate redirection".  It's almost a useless classification---what is moderate vs. minimum?  I use the phrase deliberately when I don't know how much it's going to take to get a patient to do what I want him to do.  If he can do it without me physically doing it for him, then I classify the performance as a moderate assist.  But if I have to cue him more than once, I also classify the whole thing as a moderate assist.

Moderate is a big, broad word.

It's not as bad as severe, or maximum.  Maximum---well, there's nothing above that, right?  That's it, the highest, the limit.  Maximum damage means there is no more damage to be done.

Severe damage doesn't carry the same punch as maximum, but severe is still pretty bad.  It seems like nobody wants to say "maximum" because that means there's nothing left. Severe damage might mean you have a nephron or two still kicking and so the limits haven't been reached yet.  I suppose this is why stage 4 is categorized as moderate to severe damage, and stage 5 is categorized as severe and requires dialysis, because I suppose that if your kidneys are still functioning at 15% capacity, there is still not maximum damage done, because if there was maximum damage done, one would then, naturally, be dead.

And then you are not moderately screwed.  Then you are just dead.

After I read the study, I tried on the label of "moderately impaired", and I found it difficult to process.  I don't feel moderately impaired--in fact, since coming off the Telmisarten, I feel pretty good, better than I have in years.  And there is a lot about my life that is going really really well, and I'm pretty excited about my future. So if this moderately impaired, well, I guess I'll take it.

I'll let you know when I become moderate to severe.

Here is a link to the abstract, if you're interested:

HALT PKD results


6 comments:

Rob Monroe said...

That's frustrating, for sure. Glad to know you have been in a study to help the rest of us out!
-rob

Amy Jo Schenewark said...

Becky Orton's sister, remember me? I'd like to be tested to see if my kidney can help you! Can you tell me how? I've always wanted to be a kidney donor, seriously! Who needs two, especially when you're done having children!

martha said...

I was in this study too and at the end they told me I was in stage 2...but when I mentioned this to a friend who also has PKD and is involved in the medical field, he said not to worry because GFR can fluctuate from day to day. Unless they do a 24hr collection or a couple samples over a broad period, the GFR is just a snapshot of one day of how your kidneys are working. So keep living and loving life :)

Vanessa Lynne said...
This comment has been removed by the author.
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