CSN Login
Members Online: 12

Low GFR?

Katielynn
Posts: 61
Joined: Apr 2011

I haven't been here in awhile, and I've been trying to catch up with everyone. Hope and pray you are all doing well. Since I was on last, I had an upper endoscopy which was normal( seeing a GI dr. to finally find out the cause of abdominal pain which prompted all the testing which found the kidney mass) and I've had another surgery. I had to have my right ovary, and fallopian tube removed due to some painful cysts, while they were in there, they found my appendix had to go also....Two more holes....I've been feeling some UTI symptoms, so my family dr. ordered some bloodwork and a urinalysis yesterday and my GFR is 47, it's the same as post op aand normal is 60....Is there any way to improve this value? I was told I also have to drink more. Very frustrating. Anyway, he also referred me to a nephrologist, and planned a CT for 6 mo post surgery. I have also changed urologists, my next apt is Nov 7h. I felt the need to change because after my 2 wk checkup with him, he said I'll see ya in a year!!!!???? No bloodwork? Nothing. I'm reading about everyone elses follow up care and I was without any. I'm thankful my primary care is on the ball. So the only thing he seems concerned with is that GFR...Blood pressure is excellant. So essentially I'm back to square one with the lower abdominal issues, hopefully I'll get to the bottom of this too. Talk about anxiety, yes I do have it, and wish to get back to some kind of normal soon, I am keeping as busy as possible, that's a real help.... Take care everyone, any info about that GFR would be greatly appreciated....

MikeK703's picture
MikeK703
Posts: 235
Joined: Sep 2010

Hi,

GFR is based on creatinine levels and age and race. With a low GFR (for more than 3 months I believe) your nephrologist may eventually diagnose you with chronic kidney disease (CKD), but make sure you get a detailed explanation. My urologist told me my low GFR (47 a few months ago but now 56) and somewhat high creatinine levels are considered normal after a nephrectomy. But my nephrologist tells me that he has to diagnose me as having CKD because he has to follow the "guidelines" for diagnosing, and a GFR of both 47 and 56 is technically Stage 3 CKD. This notation in my medical record alerts doctors who need to prescribe medication and tests to do so carefully. There is no certain way of determining if my higher creatinine, and thus lower GFR, are a result of a damaged kidney due to my hypertension. But as long as the levels continue to be stable, he says it is probably due to the loss of a kidney and that I should not worry.

My GFR has gone from a pre-op of 98 to a low of 47. If I had been 18 or 19 years old, the level would not have been so low. I am 64. The GFR has been 56 for the past two blood tests. Unfortunately, it will not get much higher. In fact, it could go back down a little but according to the nephrologist that would be nothing to worry about because it could go back to 56 with the next test. I should worry only if it continues going down. Kidneys normally lose functioning as we age and real kidney damage can be caused by hypertension and diabetes. So avoid getting them! Or if you have them, be diligent to control them with medication and diet. Also make sure you don't get dehydrated. That can raise creatinine levels.

Because my nephrologist did not explain things properly during my first visit, I spent six months worrying about ending up on dialysis or having to get a transplant. My urologist emailed him and during my last visit the nephrologist explained things better and I am no longer worried. So be sure to ask both your urologist and nephrologist to explain the low GFR. To show you how the whole kidney disease diagnostic method is flawed -- GFR readings over 60 are considered normal according to blood test standard criteria. However, according to the GFR chart, between 60 and 89 equal Stage 2 chronic kidney disease.

My guess is that if your GFR was good before the nephrectomy, a drop after surgery would not necessarily indicate kidney disease. After all, you don't develop kidney disease that quickly. It happens over time.

Good luck and let us know how your visits go.

Mike

icemantoo's picture
icemantoo
Posts: 1660
Joined: Jan 2010

Saw the Nephrologist last week. My GFR went down from 43 earlier this year to 42. BP is now normal. He explains that the GFR is low because of only 1 kidney and the fact that I am 68 years old and had high BP for years. He aso explains that my heath concerns with a low GFR are more heart related than Kidney failure. Tuesday I have an appointment with a dietician which is covered by Medicare with a diagnosis of Stage 3 Chronic Kidney disease. It is about time I address those issues as well. As for any recurrance of RCC after 9 years my Urologist does not seem worried so why should I. I have to make sure none of this gets in the way of my intended ziplining on my Carrabean Cruise in December.

MikeK703's picture
MikeK703
Posts: 235
Joined: Sep 2010

Iceman:
Down to 42, but it could go back up to 43 or 44 the next time you test. At least that's what I've been told -- it fluctuates and I've seen it do just that in my last 6 blood tests. Because the GFR is calculated using one's age, just being a year older at the time of the blood test could possibly lower the GFR score even though the creatinine level didn't increase. Also, if you are slightly dehydrated during the blood test, that can temporarily raise the creatinine levels and thus lower the GFR score. It's not an exact science. Our Stage 3 CKD could be due to our high blood pressure, or it could be solely the result of the nephrectomy if the creatinine has stabilized and there's no protein problem. Unless your GFR has been steadily decreasing over the years, going from 43 to 42 could just be indicative of normal fluctuation. You're right about the heart -- that's the biggest worry with poor kidney function. As for diet, I've been told the usual -- low sodium and low potassium. After surgery, the urologist told me not to overdo the protein; the nephrologist just told me I no longer had to be overly concerned about that because my levels have stabilized.
Congratulations on 9 years of no recurrence. That's encouraging.
Mike

Katielynn
Posts: 61
Joined: Apr 2011

Thank you so much for the explanations. I have a very good BP, yest it was 126/68. I've always run a little on the low side. I am also free of diabetic problems. I'm going to be 56 in Dec., so My poor little right kidney is no spring chicken either... I was scolded for not hydrating enough, that could very well be why my GFR was so low. I hate to admit it, but I have always had a problem with not drinking enough water. I'd have 2 coffees a day, maybe one diet pepsi, and a glass of water with an Advil...Now I've cut out colas completely, switched to 2 cups of organic , naturally decaf. coffee, and started on my prescribed 2 liters of water daily. I have noticed I do feel quite a bit better since drinking more water yesterday. I am using the restroom more frequently, and don't feel the pelvic pain I was experiencing pre water consumption. I feel this whole ordeal is a constant learning experience...And I must say again, reading others' experiences is a great learning tool...

Jrow
Posts: 13
Joined: Nov 2011

Your drinking/advil habit is exactly like mine pre-cancer! 2 cups of coffee in morning, a few diet cokes throughout the day, at least a couple of Advil daily... Did you have that good old caffeine withdrawal headache in the hospital? Before my gallbladder surgery I was NPO for 2 days! Agony. I begged for IV caffeine. Was told "no such thing". You have got to be kidding! Why can't they just slip a little liquid caffeine into an IV?

garym's picture
garym
Posts: 1651
Joined: Nov 2009

I drink ice water all day long at work, around 1/2 gallon a day so I'm good there. I never learned to drink coffee (not without plenty of Baileys anyway) but I'm with ya on the diet cokes, but lately I've been leaving the Coke in the fridge and grabbing a Lipton Diet Citrus Green Tea instead. I really like the taste and green tea is supposed to be very good for our kidneys.

Give it a try,

Gary

Katielynn
Posts: 61
Joined: Apr 2011

Enjoy that cruise! My daughter and I went on a Carrib. cruise last Oct. It was my first, and it was a surprise from her. I didn't want to go. Hate flying, and water. Bottom line, I cried when we had to come home. It was the absolute best time. We're planning on another next Fall, she wants a cruise wedding! Fine by me! St. Maarten was my favorite stop, also loved Antigua and St. Lucia. Live it up! I fully intend to next year.

DarrylPe's picture
DarrylPe
Posts: 75
Joined: Mar 2011

Hi Katielynn hope your feeling better. I agree with everything that Mike and the Iceman have told you so I'll just add my two cents for what it's worth. in April I had a radical nephrectomy and as of my three month scan I am doing fine cancer wise. However Pre surgery my GFR was 45 which basicly placed me at stage 3 Chronic Kidney Disease. Post surgery my GFR sliped to 24. My nephrologist told me at the time that this was not unusual and that the goal would be to maintain my kidney function at this level. Since seeing my nephrologist my GFR slip 2 more points to 22 within three weeks. Like you I went into panic mode but my doctor told me that I might have been dehydrated at test time. Prior to hearing that I was a poor water drinker. Since then I've made several life style changes starting with my diet. After seeing a renal dietitian I am now on a low protein diet 50 - 60 grams aday. I am also watching my phosphorus and potassium intake. Your avoidance of colas is a good start and, you might want to limit your red meat as well. Here are two good sites that can help you with additional info about maintaining good kidney function. (www.TheKidneySchool) and (www.kidney.org ) . You should also know that your kidney can function fine at the level that your at the rest of your life . Hope this helps alittle good luck .

Darryl

ams123
Posts: 71
Joined: Aug 2011

I was having elevated creatine and low GFR before my partial nephrectomy three weeks ago. In June my first test showed my creatinine at 1.16 and GFR at 55. It was repeated later in June and my creatinine was 1.21 and my GFR was 52. In August I had a creatinine clearance test which was normal at 112. Serum creatinine was 1.05 and GFR was 62. When that test came back my nephrologist said everything was fine, but she wanted some tissue to biopsy.

So when I had my nephrectomy the surgeon took a piece of the healthy kidney to send off for biopsy, and the results are very confusing. My surgeon said there is kidney damage, but don't worry about it. The nephrologist said there is severe kidney damage but I can't do anything about it. I am currently in the process of getting rid of that nephrologist and going to one at Johns Hopkins. In the meantime I am trying to interpret my own pathology results.

I have:

mild ischemic changes
mild acute tubular injury
focally severe chronic hypertensive vascular disease
mild chronic tubulointerstitial changes
severe focal arterial fibrointimal thickening with reduplication of elastica and replacement of smooth muscle

I spent all of last night googling and researching to see what this all means, and I think I understand it, all except the last one about the arterial fibrointimal thickening.

I had high blood pressure for a year five years ago, which came on suddenly and went away after I lost 40 pounds and started a mild beta blocker. I can't believe that one year of hypertension was enough to cause severe damage to my kidney. I'm kind of lost right now.

Linda

MikeK703's picture
MikeK703
Posts: 235
Joined: Sep 2010

Hi Linda,

Can't comment on your pathology results, but I can on the GFR as I have been researching and living with low GFR since my radical nephrectomy in Aug. 2010.

As you can see from my postings, my urologist and nephrologist initially differed over the diagnosis of chronic kidney disease, the urologist saying my levels were normal for somebody with one kidney and the nephrologist saying I had Stage 3 CKD, probably due to my history of high blood pressure. They both seem to be on the same page now, which is that my GFR and creatinine levels, though not within "standard" levels, have stabilized, indicating that the GFR drop and creatinine rise are probably a result of the nephrectomy and not because of my high blood pressure. Yet I am still diagnosed as having CKD because evidently low GFR is automatically diagnosed as CKD no matter the reason. I have to keep my blood pressure controlled and make sure I don't get diabetes because both can cause kidney damage.

It's all confusing, so I know how you are feeling right now. Anxious and worried about the health of your kidneys. I was too and my urologist scolded me for worrying so much as worry does nothing to help keep my future cancer free.

Both of your doctors are saying there is kidney disease, one of them saying it is serious (to me, all kidney disease is serious as it is not reversible and can lead to other serious health problems). So you are smart to get another opinion. You didn't say if you had any blood tests since your surgery. But more than likely you will be scheduled for regular blood tests to see if the levels are stabilizing or getting worse. You didn't say how old you are but losing some kidney function is not uncommon as we get older. Depending on your age, the low GFRs you had before the surgery may not necessarily be a result of your shortlived hypertension but a result of aging. If they are now even lower, then the partial nephrectomy is probably to blame.

Try not to spend time worrying. (Easier said than done, I know.) Low GFR doesn't mean a person is destined for dialysis. It means you have to be careful with your diet so your kidneys can do their job. And they can do their job even with a low GFR. So just follow the doctors' advice and I'm sure you'll be okay. After 6 months of fretting about this, I am now following my own advice.

Let us know what the new nephrologist says.

Mike

donna_lee's picture
donna_lee
Posts: 438
Joined: Feb 2009

Since surgery in 2006, my eGFR runs 37-40, maybe 41. There's not much you can do other than eat and hydrate wisely for your body and weight. After all, if 60 is the low of normal, take out one of the filters (kidneys) and you're lucky to be at half that amount. Your eGFR and creatinine levels are going to bounce around a few points with every test.
My husband has Stage III Kidney Disease (stabilized, now), has both kidneys and his CMP (complete metabolic panel) readings are only slightly better than mine.
Hang in there, and try not to let stress be a cause of problems.
donna_lee

ams123
Posts: 71
Joined: Aug 2011

I've been researching too - I told my husband that if I wanted to be a doctor I would have gone to med school! What is interesting is that no doctor has ever commented on my GFR, just on my creatinine level. Between June and August of this year my GFR fluctuated between 52 and 62, not great numbers, but I know the numbers can change based on one's level of hydration, recent exercise, etc.

I have not had any blood tests since the surgery, nephrologist #1 says to get tested in two months. I am 51 years old, and the pathology definitely states that the disease is due to hypertension. I'm still trying to wrap my head around that.

My father went into kidney failure when he was 53 and I saw what a life is like on dialysis and after a transplant. I don't want that to be me. I know worrying doesn't help, and I try to keep myself distracted, but there are times during the day when it pops up in my mind.

I'm disappointed that nephrologist #1 said there is nothing I can do about it, but I am doing what I can - watching my diet very carefully, exercising, and checking in with my cardiologist about my blood pressure. Those seem like the only things in my control, but they seem like important things to do, and she didn't mention them at all.

Thank you Mike, and hopefully I'll get an appointment with nephrologist #2 soon - there might be a bit of a wait to get into Johns Hopkins.

Linda

lbinmsp's picture
lbinmsp
Posts: 266
Joined: Jun 2006

I've had hypertension since I was 18 years old and on medication since I was 20. There weren't many diagnostic tests available then so I hadn't even heard about 'GFR' until I had a radical nephrectomy 10 years ago. Mine was pretty stable around 55 up until about 2 years ago - when it started to drop (along with Creatinine rising). All time low was 35 a few months ago but it's back up to 45 on the latest round of tests. Good hydration is critical (although they also say there could be TOO much hydration - so it's one of those oh-so-interesting 'balancing acts'). I try to shoot for 2 quarts of water a day (I don't count coffee or the occasional soda). That seems to keep me more in line. Bottom line, of course, for all of us who are limping along with one kidney, is close followup either by a very good PC or urologist or, as many have done, nephrologist.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network