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Author Topic: I'm confused about my kidney function %  (Read 3506 times)
paddbear0000
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« on: September 26, 2007, 02:01:55 PM »

I am so confused! According to the labs I've done over the last 8 months, my kidney function is at 19%. I even found a calculator online that uses a bunch of your lab results to calculate your function, which agreed with what both LabCorp and the local hospital's lab (the labs I use) say. But when I saw my neph last, he told me my function was at about 25%! I don't know who to believe. My neph is doing nothing for me, so I don't know whether he is right and nothing needs to be done yet, or he's just a bad doctor! What/who should I believe? Is there a better way to find out what my function is? The difference in the percentage caould mean the difference between getting on the transplant list or not.
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I HAVE DESIGNED CKD RELATED PRODUCTS FOR SALE TO BENEFIT THE NKF'S 2009 DAYTON KIDNEY WALK (I'M A TEAM CAPTAIN)! CHECK IT OUT @ www.cafepress.com/RetroDogDesigns!!

...or sponsor me at http://walk.kidney.org/goto/janetschnittger
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Diagnosed type 1 diabetic at age 6, CKD (stage 3) diagnosed at 28 after hospital error a year before, started dialysis February '09. Listed for kidney/pancreas transplant at Ohio State & Univ. of Cincinnati.
Sluff
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« Reply #1 on: September 26, 2007, 06:17:34 PM »

The website you are probably referring to is the kidneyschool. The information is good quality however both could be wrong.

I believe most people start dialysis at 10% or less function. If you are not comfortable with your nephrologist get another opinion.
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paris
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« Reply #2 on: September 26, 2007, 06:56:51 PM »

My lab report always has my GFR on it. It fluctuates a little -- some months 12% , some 15% and then back to 13%.  I trust that number. The number on the calculator is a rough number and not the most defined. It is there to give you a general idea of where you function is.  Your neph really is the one to determine your level of function.  Have you done a 24 hour urine test?   Ask you neph how he is determining your level of function.  Good luck.
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Romona
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« Reply #3 on: September 27, 2007, 01:32:49 PM »

I remember you were having some questions before about the color of your urine ect. Did he tell you anything what might be going on? I don't know if you remember me telling you about my function improving. Even though my GFR number was better, my protien was high. I think there are other factors that they look at when determining when dialysis will start. I was starting to get confused at that time which is a sign toxins are not being removed. My GFR was about 17 it had been 13. Before I had the whole kidney biopsy mess my GFR was about 20-25. They encourage me to find a living donor when it was 20-25.
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Rerun
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« Reply #4 on: September 27, 2007, 01:35:30 PM »

In the USA you can get a transplant evaluation at 20%.  So go with the 19% and get evaluated.
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paddbear0000
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« Reply #5 on: September 27, 2007, 01:51:29 PM »

I remember you were having some questions before about the color of your urine ect. Did he tell you anything what might be going on? I don't know if you remember me telling you about my function improving. Even though my GFR number was better, my protien was high. I think there are other factors that they look at when determining when dialysis will start. I was starting to get confused at that time which is a sign toxins are not being removed. My GFR was about 17 it had been 13. Before I had the whole kidney biopsy mess my GFR was about 20-25. They encourage me to find a living donor when it was 20-25.

I told my neph about that and he didn't say anything, He still keeps telling me I wouldn't have symptoms yet. I've had it with this guy! I'm getting another opinion! My urine is back to be a little yellow, but I only pee twice a day--when i get up and when I go to bed. I have no appetite either. My most recent lab work says my creat went down to 3.0 from 3.1 and my BUN dropped from 44 to 37, but again, I'm not eating, so I think may have something to do with it. This idiot seems to think my labs are God. He doesn't think I need a biopsy, but I want one. My GFR (according to my labs) hasn't changed from 19 in the last year, but like I said, he told me it's at 25%.

In the USA you can get a transplant evaluation at 20%.  So go with the 19% and get evaluated.

My mother's boyfriend is a blood match, so he's planning on getting further tested. I just need to find a doctor who is a little more proactive this this a**hole (sorry, I'm pissed)! All he's said is that I should get a kidney/pancreas transplant. That's it.   :rant;
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I HAVE DESIGNED CKD RELATED PRODUCTS FOR SALE TO BENEFIT THE NKF'S 2009 DAYTON KIDNEY WALK (I'M A TEAM CAPTAIN)! CHECK IT OUT @ www.cafepress.com/RetroDogDesigns!!

...or sponsor me at http://walk.kidney.org/goto/janetschnittger
********************************************************
Twitter.com/NKFKidneyWalker
www.facebook.com/profile.php?id=1659267443&ref=nf 
www.caringbridge.org/visit/janetschnittger

Diagnosed type 1 diabetic at age 6, CKD (stage 3) diagnosed at 28 after hospital error a year before, started dialysis February '09. Listed for kidney/pancreas transplant at Ohio State & Univ. of Cincinnati.
Romona
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« Reply #6 on: September 27, 2007, 01:59:09 PM »

If you can go see someone else do it. If you are having trouble eating that is not a good sign. Can you go to a nephrologist at the transplant center you are considering? At times I thought mine was so pushy about getting a transplant. But now I realize he had my best interest at heart. Things can go downhill so fast. I'm surprised at the way he is treating you. My levels vary from the local lab I use and from the ones at the transplant clinic :grouphug;
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paddbear0000
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« Reply #7 on: September 27, 2007, 02:00:49 PM »

If you can go see someone else do it. If you are having trouble eating that is not a good sign. Can you go to a nephrologist at the transplant center you are considering? At times I thought mine was so pushy about getting a transplant. But now I realize he had my best interest at heart. Things can go downhill so fast. I'm surprised at the way he is treating you. My levels vary from the local lab I use and from the ones at the transplant clinic :grouphug;

I'll have to look into that idea. Thanks!
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********************************************************
I HAVE DESIGNED CKD RELATED PRODUCTS FOR SALE TO BENEFIT THE NKF'S 2009 DAYTON KIDNEY WALK (I'M A TEAM CAPTAIN)! CHECK IT OUT @ www.cafepress.com/RetroDogDesigns!!

...or sponsor me at http://walk.kidney.org/goto/janetschnittger
********************************************************
Twitter.com/NKFKidneyWalker
www.facebook.com/profile.php?id=1659267443&ref=nf 
www.caringbridge.org/visit/janetschnittger

Diagnosed type 1 diabetic at age 6, CKD (stage 3) diagnosed at 28 after hospital error a year before, started dialysis February '09. Listed for kidney/pancreas transplant at Ohio State & Univ. of Cincinnati.
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