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One kidney left and diagnosed with chronic kidney disease

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

Had my left kidney removed in Aug. 2010. Stage 1. Was lucky that they found it in a CAT scan for something else. Was just starting to feel comfortable that the kidney cancer was probably caught in time and has not spread. Now my bloodwork shows that my creatinine levels are climbing and, as a result, the GFR is getting lower: before surgery creatine was .8 - .9 in all my blood tests, making the GFR >60. After surgery creatine went immediately to 1.4, then 1.3 the next month, stayed at 1.3 several months later, went to 1.4 two months after that, and the most recent reading was 1.5 in June, making my last GFR reading 47. All those post-surgery readings are considered to be in the Stage 3 chronic kidney disease parameters. My urologist has been telling me the readings are normal for somebody with one kidney, but the nephrologist says it is not normal. I was told that my remaining kidney is not functioning up to par, probably a result of my history of high blood pressure, and that the GFR should be >60 with just one kidney too. Now I have this to worry about. I am only about 13 GFR points away from Stage 4, when serious talk about dialysis evidently starts and which is the stage before kidney failure (Stage 5). I don't want to spend the rest of my life on dialysis. I have an ultrasound coming up next week and more blood tests scheduled for the end of July. Does anybody have any insight into this situation? Thanks.

icemantoo's picture
icemantoo
Posts: 1477
Joined: Jan 2010

I will be 68 in a few weeks. I am a 9 year survivor of RCC. I have always had high blood pressure. In looking at my GFR results they were 50 a few years ago and now 43 which is Stage 3 moderately decreased Kidney Function. My Urologist does not seem concerned, but I started seeing a Nephrologist and he is concerned.My GP had me on several blood pressure pills reducing my readings to about 140/85. My Nephrologist was not happy with those and now I am on additional BP medications reducing my BP to 120/60.He is trying to get my GFR higher. He advises that at my readings I have a 10% chance of a heart issue within 5 years and a 1% of a chance of Kidney failure within 5 years. That being said none of us with one kidney has "normal" GFR results, but we have to keep those numbers up for our heart and kidney heath. My advice to those of us with low GFR results (under 50) and/or high blood pressure is to see a Nephrologist as well. With better monitoring we should all be able to raise our GFR levels above 50 and although not normal as compared to the general population we have to do the best we can with what we have (one Kidney).

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

Hi. Thanks for responding to my posting. My understanding of chronic kidney disease is that the damage is not reversible. So getting our GFR levels up might be a chore. I also understand that dehydration at the time of the blood tests would result in a high creatinine level/low GFR level. If dehydration is the culprit then making sure you drink plenty of water on a daily basis and especially before blood tests might increase the GFR levels. But if they are a result of high blood pressure, as ours seem to be, I think the best we can do is stabilize the levels by controlling the blood pressure. I've had some off-the-charts blood pressure readings in the past but now with diet changes and pills I am usually below 120/80 with some higher readings (140/85) in the early morning hours, which the doctor says is understandable because readings are generally higher at that time. In any event, it sure is scary to have one kidney and be told you have chronic kidney disease that someday might put you on dialysis or on the transplant list. I'm 64 and I retired two years ago. Within a year of my retirement I was diagnosed with kidney cancer. Some people might think, well, that's pretty old, does he want to live forever? No, but 20 more (dialysis-free) years would be nice! Good luck.
Mike

ejneary's picture
ejneary
Posts: 64
Joined: Mar 2010

You mentioned nothing regarding dietary changes that you have made since the removal of your kidney. Did the Urologist or Nephrologist talk about that? Also, has your Nephrologist put you on blood pressure medication? I was put on atenolol when I was on Chemo to keep things in check and still take it from time to time to keep my blood pressure below 120/80 when needed.

The diet changes were the big one that my Nephrologist was concerned about. Protein and sodium were his big concerns.

John

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

Hi John. Yes, my urologist also told me to curb my sodium and protein intake. Protein is an easy one for me as I've never been a big meat eater. The sodium is more difficult because there's sodium in everything! But my wife and I have managed to find low-sodium food and we do more cooking and less eating out. I've been on atenelol for years now.
Mike

jra404
Posts: 3
Joined: Mar 2011

I had a radical nephrectomy in 1976. This year my nephrologist informed me that my remaining kidney was not functioning up to par. He put me on a low potassium and low phosphorous diet. In a Matter of three months my kidney function improved. There is an excellent diet for kidney problems you can obtain from a nutritionist.

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

Hi all. Mike I know how you feel I had a radical nephrectomy done in Apil and I thought WOW dodged another one. Post surgery labs have revieled that my creatinine level has gone up from 1.9 to a 3.9 . I 'm currently hovering between 3.2 and 3.0. I saw a nephrologist today and was in formed that I'm at stage 4 chronic kidney disease . Here I go again another battle but , I'm strong and have faith . The doctor told me that the goal is to maintain my GFR where it is at 25 . Like you they belive it is due to my high blood pressure . You might want to go this site Kidney .org lots of good info.

Keep your head up
Darryl

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

Hi Darryl,
Sorry to hear about your low GFR. We had an exchange on my other posting about this issue. At 1.9, it looks like you were in Stage 3 kidney disease when you had the surgery. Did your surgeon discuss this with you before the surgery? I've now been told that my remaining kidney was probably bad all along and that the cancerous one was doing most of the work, keeping the creatinine levels down. Now that it's gone, the remaining one is not able to do the job as well. My creatinine and GFR levels were okay before surgery and didn't go haywire until afterwards, so there was no discussion about this possibility. Had I known, I may have chosen to go with a partial nephrectomy instead of a radical. They advised me to go with the radical because of the location of the mass, saying it was risky to do a partial. I might have been willing to take the risk if I knew the alternative. Work hard to keep your salt intake to a minimum to keep your blood pressure in check. It's a difficult thing to do in this processed food culture. I know, I've been trying and it's tough. I wish you the best.
Mike

donna_lee's picture
donna_lee
Posts: 393
Joined: Feb 2009

I guess you just need to vent your frustration at what has occurred in the past months. Second guessing whether you should have had a radical or a partial is a moot point at this stage.
We've discussed this in prior posts, but since June 2006, my creatinine has run from 1.3-1.5, and my eGFR between 36-41. Yes, I suppose if I wanted to put myself into a category, I have chronic kidney disease. In fact, when my husband saw a nephrologist for his CKD, which was stopped at Stage III with a change in food intake, I briefly discussed my situation with the Dr. At this time, there is no need to work with a nephrologist, unless my blood tests start changing dramatically.
But I consider myself more of a cancer survivor. Of course the surgeries (3 for cancer)have uncovered a left branch bundle block (the ventricles don't contract as they should) and atelectasis (collapse of part of the right lower lung) where the surgeons had to remove part of my liver, gall bladder, and a set of nodes. Why do I tell you this...because you got off easy, so far. And what you are left to deal with is something you do have some control over.
Our adult son has gone thru kidney problems, too. Stones so large they could not pass, and the urologist couldn't wait for the lithotripsy machine to arrive and had to do surgery. Subsequent stones, a CT, and they found he has what is called a "sponge kidney"- a section that doesn't have the nephrons like it should and looks more like a soft sponge.

So live, live, live. Donna

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

Donna,
I was not venting my frustration. Just expressing what I was thinking. I know by your last line that you are trying to be encouraging, thanks, but don't you think that saying I have gotten "off easy" is a bit presumptuous considering you know nothing about my medical issues or what I am going through except for what I have disclosed here? And my "second guessing" may be moot to you but not to me. You seem to have found your own mental and emotional response to your family's medical tragedies. That's great. But please allow me to express myself in my own way. Mike

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

Hi Mike thanks for your post. I saw my nephrologist on July 19 and he informed me that my GFR is 25 which puts me at stage 4 CKD. Wow I shouldn't be in shock but I am. I'm 15 points from dialysis. I know thats not a death sentence but, it's a major life style change. I've set an appoinment with a dietition and have been busy reading anything that I can . By the way Mike if you haven't already checkout ( www.Kidney.org )and another good site( www.The Kidney school ) lots of great info. Will keep posting thanks.

Darryl

donna_lee's picture
donna_lee
Posts: 393
Joined: Feb 2009

Mike-I realized after I hit post that I'd been too mean spirited. Even tho I'm technically OK physically, I've been going thru some stuff otherwise that has affected me...and obviously some days more than others. Please accept my appologies.
Donn

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

You've got style, Donna. Thanks. And I hope things get better for you.
Mike

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

Hi Darryl,
Yes, dialysis would definitely be a major lifestyle change. But thank God kidney failure is not the death sentence it used to be prior to the 1970s. I wish you the best in this fight. From what I've read in your posts, you already have the first prerequisite for overcoming this -- a positive mental attitude. I'm still in stage 3. I'll be going for my next blood test in about a week. My last one showed my creatinine levels were down by .2, raising my GFR from 47 to 51. I'm hoping that will happen again.
Regards,
Mike

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

Darryl,
I had another round of blood tests and my creatinine levels were lower by another tenth of a point. That's 2 tenths in the past month. So my GFR has gone from 47 to 51 to 56 during that time. (I ended up with two blood tests in such a short period kind of accidentally when two different doctors ordered them). The nephrologist tells me my kidney function is "stable." The lower creatinine and higher GFR could be just a result of the lab tests' margin of error, but I'm going to think "improving" instead of "stable."
Mike

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

Hi mike good to hear keep doing what your doing. As for me my last blood test was in mid July and my GFR has gone down to 22. I still positive and hoping that something will turn my numbers around . I'm watching my diet and have lost some weight let's see what happens . Will keep posting it feels good to talk about it .

Take care
DarrylPe

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

Hi Darryl,
Sorry to hear your GFR levels slipped. The experts say that chronic kidney disease is irreversible but I don't count God out of the equation. There is an excellent book available at Amazon.com called "Kidney Disease: A Guide for Living," by Walter A. Hunt, a scientist who also went through kidney disease, all the way to dialysis and eventually transplant. It's reader friendly and explains a lot about the disease and what to expect. I found it very helpful. You and I have that extra strike against us, one kidney and having to worry about the cancer hitting us again, but with a positive attitude and careful diet and lifestyle modifications, we can get through this.
Take care,
Mike

ams123
Posts: 71
Joined: Aug 2011

So glad to hear that your levels are going up. I think of it as improving as well.

Linda

ams123
Posts: 71
Joined: Aug 2011

Hi Mike, I am scheduled for surgery to remove a 3cm tumor in my kidney on September 9, but now, with two kidneys, my creatinine is 1.21 and my GFR is 52. I just had a creatinine clearance test to see what that will show. My surgeon isn't sure yet whether he can do a partial nephrectomy, and I am having an MRI tomorrow so that he can get a better look at the location of the tumor. I am supposed to have laparoscopic robotic surgery, but he said that only gives him a 30 minute window of time to remove the tumor. If I have kidney disease I really want him to save part of my kidney, so now I don't know what to do. I have to wait for the results of this latest test though.

My father had high blood pressure his whole life which resulted in kidney failure at age 53 (I am 51). I do not have high blood pressure, am not overweight, don't have diabetes, none of the risk factors for kidney disease. Isn't it unfair to have both kidney cancer and kidney disease?

I have already decided that I will never have dialysis or a kidney transplant, so I would like to save as much of my kidney as possible. I have already cut my protein way down, sodium isn't a problem because I don't eat processed foods, and hardly ever go out to eat. That is all I can do right now.

Linda

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

Hi Linda,
I'm sorry to hear about your dilemma. It's no picnic having the double whammy. From what you said, your eating habits certainly didn't bring this on. I wish I could say the same, but my lifestyle, eating all the wrong foods, lack of exercise, etc. more than likely contributed to my kidney disease and I have no one to blame but myself. My creatinine and GFR levels were okay before the surgery and didn't go bad until immediately afterwards. My doctor tells me the remaining kidney was likely not working very well to begin with and that the one that was removed was probably doing enough to maintain good levels. Even if I knew beforehand, I had no real choice between a partial and a radical because of the location of the mass. I'm 64 and this all happened the first year of my retirement. My plans for the next 20 years quickly collapsed. Dialysis is not as bad as most people think. I feel pretty silly admitting it, but I used to picture it as being hooked up to a machine 24 hours a day, kind of like an iron lung. Everyone has to make their own decision about this, of course, and time has a way of changing our outlook. In any event, we should make sure we know all there is to know about it before deciding. The book I mentioned in the earlier post is a good start. So is www.kidneyschool.org. If I have to go on dialysis to stay alive so I can have more time with my wife, I will. I think I would draw the line at a transplant. Would I want to go through all that for a few more years? I don't know. Would it be fair to waste a donated kidney on an old fart like myself? Probably not. I hope I never have to make those decisions. Hopefully you will not have to either. It's possible your creatinine and GFR will stay the same after surgery. In any event, you have a fight coming up and I pray that you will come out on top. Keep us informed.
Regards,
Mike

ams123
Posts: 71
Joined: Aug 2011

I can't say I had this healthy lifestyle my whole life unfortunately. I grew up eating junk, smoking, etc. So who knows. We can't blame ourselves, we can only move forward from where we are. It is never too late to change, three years ago I started a healthy diet and took up running. I'm not fast, but I love races. My longest one was a half marathon.

You are not an old fart, and a kidney would not be wasted on you. You sound like a very caring, empathetic, loving middle aged man (ok, maybe the end of the middle age stage).

It's funny, I would a prefer a transplant over dialysis, the opposite of you. But I am hoping I never have to make that decision, and if I do it won't be for a long time. I am waiting for the results of my creatinine test - ugh, I hate waiting!

Linda

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

I have just returned from my second follow-up visit with my urologist/surgeon. Had a chest x-ray and will have the results probably sometime this week. My blood tests show that my creatinine/GFR readings have stabilized at 1.3/56. I asked him the all-important question -- is this normal for somebody who has had a kidney removed or do I have, as my nephrologist has diagnosed, chronic kidney disease (CKD). He is absolutely adamant in his earlier statement to me that this level of creatine (and higher) is normal after a kidney has been removed.

The urologist said that if the levels get worse then I could have CKD but they seem to have leveled off after peaking, the usual process for a healthy remaining kidney after a radical nephrectomy. I must continue to watch my blood pressure and make sure I don't develop diabetes because down the road they could cause kidney disease. He argued that if people who donated a kidney were told that they had CKD because their creatinine went up after surgery, nobody would donate a kidney. I asked if anybody with a good creatinine level stayed at their good level after surgery, he replied that some do, but they are usually very young people. He cited an 18-year-old as an example.

After 6 months of anxiety over this (certainly not conducive to full recovery), I am relieved. But it's not over yet. The urologist will email his opinion about this to my nephrologist, whom I have an appointment with later this month. Should be interesting.

ams123
Posts: 71
Joined: Aug 2011

From everything I have read it is normal for creatinine to be slightly elevated in someone who has one kidney, and it also goes up as we get older even if we have both kidneys. I was having a lot of anxiety because I had elevated creatinine levels (1.2 and I still have both kidneys), but then I had a creatinine clearance test and that came out normal, so both my nephrologist and my urology surgeon think I do not have kidney disease. Did you have a creatinine clearance test - it is a more reliable test than just the blood test. You should definitely watch your blood pressure and sugar intake to avoid hypertension and diabetes. My father had kidney failure from years and years of uncontrolled hypertension. Kidney cancer is enough, we don't need kidney disease as well!

Linda

ams123
Posts: 71
Joined: Aug 2011

From everything I have read it is normal for creatinine to be slightly elevated in someone who has one kidney, and it also goes up as we get older even if we have both kidneys. I was having a lot of anxiety because I had elevated creatinine levels (1.2 and I still have both kidneys), but then I had a creatinine clearance test and that came out normal, so both my nephrologist and my urology surgeon think I do not have kidney disease. Did you have a creatinine clearance test - it is a more reliable test than just the blood test. You should definitely watch your blood pressure and sugar intake to avoid hypertension and diabetes. My father had kidney failure from years and years of uncontrolled hypertension. Kidney cancer is enough, we don't need kidney disease as well!

Linda

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

Thanks, Linda. If the nephrologist insists on his diagnosis despite the urologist's opinion, I will ask about that test. I had never heard of it.
Mike

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

Hi all. Great to hear your good news Mike . As for me I went to the renal dietitian about two weeks ago and she told me that she has seen patient's creatine level go up after surgery many times ,and she's confident that with a good diet I could possibly stablize my GFR. She placed me on a low protein diet of about 50-60 grams a day. I been spending alot of time on the Davita.com web site. They have great kidney friendly recipes and a good discussion room so I'm feeling alot better both physically and emotionally .
Good luck Linda.

God bless
Darryl

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

Hi Darryl,
According to what my urologist told me, the creatinine level could even double after a radical nephrectomy. It goes to its peak level, then drops back down somewhat to eventually level off, which is what yours did according to your earlier posting. Evidently, this rise in creatinine is something that happens more often than not after kidney removal, depending on age, so there's no reason to think that it's automatically going to get worse as long as we take care of ourselves. I'd bet that the worst is over for both of us.
God bless you too,
Mike

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