GFR Nosedive --- help, please

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Simplegift
New Member


Date Joined Aug 2010
Total Posts : 3
   Posted 8/27/2010 10:12 PM (GMT -6)   
I'm a Type II Diabetic, and up until 6 months ago have had only mild impairment of kidney function for over 6 years, was just being monitored with other blood work. Then recently my labs came back with a GFR of 31, and we retested, same result. PCP explained where I was in staging, and that I could stay at this level for a long while, or it might change; when it dropped into the 20's I'd get a nephrologist referral.

I was most surprised at the suddenness of the drop. I had switched last January to an anti-inflammatory diet, similar to Mediterranean, to lose weight and improve overall function (I have arthritis), exercise, feel better --- and it worked beautifully. But I since learned it has lots of high-phosphorus foods (beans, seeds, nuts, whole grains, fat free dairy), even though it was very low in saturated fat. Now I'm learning that a renal diet usually limits phosphorus....and I am wondering if I may actually have triggered some of the renal failure inadvertently. I'm not feeling guilty here, just confused, and wanting input from others who have negotiated these things --- too much happening, too many variables, too many questions for my doc, and mostly, not even knowing what to ask. I'd really like to talk to the nephrologist now, but I don't know if I'm just being too reactive.

I see my PCP next week. Am considering asking for a phosphorus level, maybe other dietary consult now? Sitting on a GFR of 31 feels like hanging off the edge of a diving board but not jumping in....

I'd just love some general feedback from people who have gone through the transitions of CDK stages to ESRD, and how you handled the decline, keep some sense of --- well, I'm not sure control is the right word, but at least a center.

Thank you!

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1434
   Posted 8/28/2010 8:53 AM (GMT -6)   
Hey Simplegift! Welcome to HW allthough I am sorry under the circumstances you have joined for. Did you PCP say this is permanent? Sometimes GFR can flucatuate a bit. Do you know what your creatinine is? Also, are you in your 30, 40's, 50,s...etc? Have they put you on any medicine to help your kindey's? I would ask to get rechecked when you go to your PCP next week. It can't hurt to check again a few weeks after the first 2 tests.

If nothing has changed, I would go ahead and ask to be referred to a nephrologist. There is nothing set in stone saying you have to go when you get to 31 %. Im not sure what my GFR was when I first went to my nephrologist I just know I was in perfect range 3 months prior and then when I got my bloodwork done 3 months later i was in acute renal failure. Needless to say i was in the nephrologists office the next day and had a kidney biopsy the day after that to find out for sure what was causing the problem! Now I am back up to 50% kidney function but it fluctates all the time.
Amy
Kidney Diseases & Disorders and Lupus Moderater
Cyclosporine, Prednisone, Lisinopril, Integra Plus, Vitamin D 50,000 units
PRN: Imitrex, hydrocodone, Ambien, Flexeril, Ultram, Darvocet, Zofran

If God brings you to it, he will get you through it!!

Simplegift
New Member


Date Joined Aug 2010
Total Posts : 3
   Posted 8/28/2010 9:17 AM (GMT -6)   
Thanks so much for your response --- I thought kidney damage due to diabetes was irreversible, so your post surprises me. I don't know my creatinine, but I was in the ER the other night for other reasons, and they confirmed that I had kidney impairment --- I told them what my PCP said my numbers were. They didn't correct them, so I'm assuming they were either the same, or possibly lower, told me to follow up with him. I've got an appointment coming up on Thursday. If it is worse, I'm definitely going to ask for the referral; if it's better, to add at least a phosphate to the SMA-6 he's already ordered.

I'm 56, 12 years since diagnosis though I think I may have had it for a year before that. I did have a complete physical annually, so it shouldn't have been earlier than 13 years. What's weird is that after a year of diabetes when it was 8%, I got it down to below 6.5, and in recent years it's been between 5.4 and 5.7 --- excellent numbers, high end of normal, non-diabetics. I have high blood pressure, but that's well controlled too. I expected I'd still get this, but it should be slower, not much faster than normal, given that work. Really frustrating.

Are you diabetic? That seems to be more important, based on my reading, for whether or not GFR can improve, and that diabetes is the worst case scenario.

I'm having a lot of difficulty dealing with this emotionally --- more than I expected. This isn't my only health problem, and I knew this day would come, but I thought I had another 5 years in me --- was improving significantly, or so it appeared, and had made some wonderful plans....I don't want to jump the gun, but this is tough. I'm looking for a support group.

I would like to hear, if you are open to it, more about the experience itself --- what's the kidney biopsy like (never had a biopsy of any kind?) What else does the nephrologist do --- just draw blood and urine? Scans? I'm used to testing, but some kinds are harder for me than others --- like I've never been able to handle MRI's. I'm just spinning here, looking for answers and control, and there really won't be any....just wanting to go with the flow, but I'm still trying to swim upstream against what appears to be a pretty strong current. I have great friends, though, and excellent docs, and a wonderful church community --- where I live has an outstanding health care system. I just want some help making this transition, adjusting.

Thank you so much. Sorry I am venting. Gotta find something to get my mind off this, but I feel like I need to take my head off to do it :)) You're a peach.

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1434
   Posted 8/28/2010 11:19 AM (GMT -6)   
Hey there, Don't worry about venting, that is complelty normal! You are more than welcomed to come here when you need to!!! No, I do not have diabetes. I have lupus, the lupus decided to attack my kidneys about a year and half after my official diagnosis!

A kidney biopsy is very simple. I worked myself into a panic for pretty much nothing. It is generally done in the hospital and after it you will have to lie flat on your back for 6 hrs to make sure you give your kidney time to heal after a piece of it is taken away. There is no sedation and it isnt need. The biopsy does not hurt and once you are takin into the room, the procedure takes about 5 minutes. You will lay on your stomach with your hands about your head. Then the nephrologist will numb up your back and then he will stick a long skinny needle through your back into your kidney and take a piece of tissue. It does not hurt, I promise. The worst part is the numbing of your back and that just feels like getting your blood drawn, so not painful at all. They might take 3 or 4 samples of your kidney.

When I was first in kidney failure, i had to have an ultra sound of my kidneys to make sure there were no cysts or any growths. Then during the biopsy, they were also ultra sounding the kidneys to make sure they knew where to go for the kidneys. I promise...nothing at all to worry about. Nothing painful either!

The nephrologist (for me) met with me and asked me about my health history and then explained what the blood work and urinslysis showed. Then he answered any questions I had. I had to go give him a urinalsys so he could look at it under the microscope. Then when he got done with that, he explained what he saw and that I would be having a kidney biopsy the next day and would be admited into the hospital. I was suppose to leave the same day I was admited BUT I had a small bleed in my kidney where they did the biopsy so they had me stay over night to make sure it was nothing serious. I got to leave the next day around noon.

Ok, so I know that is a lot of information...do you have any questions about anything I mentioned so far??
Amy
Kidney Diseases & Disorders and Lupus Moderater
Cyclosporine, Prednisone, Lisinopril, Integra Plus, Vitamin D 50,000 units
PRN: Imitrex, hydrocodone, Ambien, Flexeril, Ultram, Darvocet, Zofran

If God brings you to it, he will get you through it!!

Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 8/28/2010 11:25 AM (GMT -6)   
Hi Simplegift,
I don't have diabetes so I won't be much help there. But I do know what it is lke to think things are going well and then the docs throw bad news your way. It is very hard to deal with. It took me awhile to wrap my head around it and move on to a "new normal". Don't ever worry about venting here.... it is what these boards are all about. Wishing you luck on Thursday.
Elizabeth
Dx'd with Crohns 1984
Polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol,  Imuran, Folic acid, and Enalapril.
 

Simplegift
New Member


Date Joined Aug 2010
Total Posts : 3
   Posted 8/28/2010 11:54 AM (GMT -6)   
Thank you, Elizabeth, that helped a lot. On top of the rest, I'm single and need to arrange rides for everything, so this will be a challenge. I appreciate the info and the freedom to vent. I believe I'll need it! Have a good day. Deb
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