Thursday, October 06, 2011


Up to 1.07. I think that's bad.

I get confused about creatnine, mostly because I'm not ever totally sure what my level is. When this whole thing began, I thought I started at about 1.0. Then when I got pregnant with my daughter, my OB said that my creatnine went down to .7, which she says never happens. Yay, it's a miracle! Or a different lab. You decide.

So my local nephrologist has always used .7 as my baseline. Beth Israel uses the same lab every time they test me, so that's the number my neph here uses, too. She always tests my creatnine herself, but if it's different than the level from BIDMC, she goes with that one.

This last month, I was supposed to take my semiannual trip to BIDMC, but my life sort of imploded and I didn't make it. So, I did my BPs at home, and got a blood draw at a local Quest Diagnostics lab, which is supposedly the same lab all the HALT PKD subjects use. My last read from BIDMC was .9. Now it's 1.07. These seem like insignificant changes, but my nephrologist assures me they are not. And, also, she has always reminded me that even though my levels have always been within normal limits, the fact that they have increased steadily is also not a good sign, that many nephrologists will blow off any level that is within normal limits, forgetting that they need to take into account where the patient started. I'm not sure who to believe--when I brought up my changing levels with Dr. Steinman, he sort of shrugged and said my neph might have a point, but I'm still far from needing a transplant!! And who KNOWS what will happen in 10 years!!! Medical technology is going to be totally different!!!The future is so exciting!!!!!

(I'm using exclamation points because that's how I think about Dr. Steinman. An eternal optimist who sees endless possibilities. This is an excellent quality in a researcher. It's not as helpful, though, when you are trying to get practical answers about how you should prepare for that exciting future full of possibilities that might not be so exciting.)

But with a creatnine level of 1.07, I am now no longer within normal limits. A normal creatnine, according to the printout I got from Quest Diagnostics, ranges from 0.58 to 1.06. Obviously, 1.07 is not very FAR out of normal limits, but it's not like it's going to go down any time soon.

So now I'm racking my brain, trying to think of what I've done in the past 8 months to have my creatnine go up. All the while when I was stable, it was because I was more active. Okay, I'm on that--getting back on the horse after a few injuries. I was a little more liberal with caffeine intake--okay, a LOT more--guess I can cut that out too. I think of how I used to search for "kidney friendly" dinners to make (although I'll admit the eggplant casserole I made from a dialysis cook-book didn't go over super well with my family). I used to obsess over my food, and it made me a little neurotic.

Do I have to go back there again? This afternoon, I was thinking about all of this, and the constant question, "What can I do? What can I do?" started to thrum through my brain, and it made me sad, only because I've been there before, and despite all the work and the worry, there is still no guarantee that anything I do can save my kidneys.



RobMonroe said...

Blerg about sums it up.

My new nephrologist said pretty much the same thing - there is nothing that can be pinpointed to say "X leads to Y" when it comes to our disease. B@#$%G! would be more like it.

cran said...

I, too, have PKD and have followed it for over twenty years. Just to give you a little perspective, I do not believe in any kind of crazy diets. You must be well-nourished, so moderate to small portions of a variety of foods. I don't drink, smoke nor take any drugs aside from bp meds and a couple of others prescribed by my dr. My creatinine has crept up very slowly, over years.
Last November I had fistula surgery so I could begin dialysis but I haven't even reached that point yet. My creatinine hovers around 4.6 from month to month. I have no swelling, some flank pain and good urinary output. About four years ago, my dr started talking dialysis and I thought I didn't have much time. Every summer since then I have made sure we had a nice beach or mountain vacation, even when we could barely afford it, because I didn't know when things would get complicated. Every week, every DAY that I haven't started dialysis feels like a gift.
I guess what I'm trying to say one can really give you a date for when things will get bad. Live your life, enjoy! Take care of yourself, too, but relax a little.
Finally, I think exercise contributes to slightly elevated creatinine levels sometimes, so it isn't always bad. If you have good urine output, keep downing the fluids--give those bad boys something to do! Lots of luck to you. I wish I had had someone to talk to a few years ago, besides my dr.

Heather O. said...

Cran, I think you're pretty much my new hero.