Having just a solitary kidney causing CKD?

Fran I can not begin to thank you enough.  I found a wealth of information.  I had done searches before on solitary kidney, one kidney, etc., but never thought to use kidney donor.  It showed me that my classification of ckd stage 3b, based only upon the egfr formula, is NOT accurate for solitary kidneys.  That with one kidney the typical white male of my age 68, should expect their egfr to be about 60 to 70 percent of what it was before kidney removal.  My sort of problem is that all I know about my gfr before losing the kidney is that is was greater than or equal to 60.  So I looked up what the average healthy white male my age has as a gfr and it was reported as 75 plus or minus 11.  So taking the 75 and calculating what 60% is, it comes to 45.  My latest egfr was 43.  It was also reported that it can take up to 3 to 5 years for the remaining kidney to completely reach its full potential, with gradual increases of egfr.  Mine has gone from 35 to 43 in 8 months.  I am so grateful for you suggesting this search criteria. Rick

Smile, glad it helped you find some answers.

Hello Rick,

                 My husband had a kidney removed four months ago because of cancer. We also were expecting things to get back to normal afterwards. After the first 3 weeks things were improving and then all of a sudden he started to go downhill. His current kidney function is just 20%. The nephrologist seems not worried, hasn't even suggested a diet but the surgeon has mentioned the possibility of needing dialysis.

               Can you direct me to where you read that it can take the kidney 3 to 5 years to reach full potential?

              

There are a few different studies you can find via google.  Search on things like renal function improvement after nephrectomy.  Or life with solitary kidney, etc.  But here is a link to a study that they did over a 60 month period (5 years) that showed that patients (of course not all) showed improved function throughout the 5 year period IF THEY HAD A SINGLE KIDNEY DO TO AN RN DUE TO SOMETHING LIKE CANCER (RN means kidney removed), NOT FOR THOSE THAT HAD RENAL FUNCTION ALREADY.  There is no doubt that 20 eGFR is low but it is odd that the urologist is talking dialysis while your kidney doctor is not.  Next appointment talk to the kidney doctor.  Tell them what the urologist said.  Next appointment with the urologist as him what he means about dialysis.  I'm no doctor but I thought 20 while low is still not time for dialysis.  Was your husbands egfr before the removal already poor?  Remember too that the study showed improvement over long term.  My kidney doctor tells me it takes about 12 to 18 months and that is about the best you are going to be.  Your husband (and I) will never have "normal" numbers of over 60, but what we want is a steady set of numbers that only range plus or minus 5 between different tests.  And remember as we age, even without CKD our kidney function declines.  Be aggressive with your doctors until you get a good explanation as to what is going on and what to expect.  Also was it just one test that reported 20%.  How often is he tested?  Ask for another test to confirm.  I know what you and he are going through.  It is difficult to know what to worry about more.  The CKD or the return of cancer.  I know I find myself obsessing with the CKD for days on end, but then I realize how stupid of me when I should be worried more about the return of cancer.  Then I spend the next days obsessed with cancer worries.  Now a few months have passed and I realize, it is all out of my hands.  I still worry, but try to not obsess.  To enjoy what I have left and not miss the good things around me.  The dangers of CKD and cancer are still with me, but everyone my age group (68) has to start to live with a bit of worry of what is going to happen, what is going to end this journey.  I found this website and the people on it have been the best thing I have found since the kidney removal.  So write us anytime, ask anything, nothing is too silly.  Here is one website: https://onlinelibrary.wiley.com/doi/pdf/10.1111/bju.12277

Lynda,

I would certainly agree with what Rick has said. You and your husband need to be very candid in appointments with both doctors. These doctors need to reach a concensus regarding your husband's case. And your nephrologist needs to share more of his thinking with you and your husband? Why isn't he or she overly concerned? What does he or she expect to see over the next year with your husband's renal function data? When is it time to start thinking about treatments like dialysis?

Frankly, not knowing what is going on only heightens any stress and anxiety your husband ( and you) may be feeling. I'm not sure doctors always realize what they need to be telling us as their patients. So I try to help my doctors by arriving for visits armed with questions and data (e.g., a table with my home blood pressure reading). I also let them know what is causing me stress/worry. I find that I am sometimes worrying over nonossues🐶

Marj

4 months is not a long time, I'd give it some time. I agree with rick, talk with your Nephrologist about all issues. 

The last time I was in the hospital I was given different release dates, every Dr gave me different dates only to keep changing. I had several Dr working on me so it was hard to figure out who to believe. I started watching WHEN the orders changed day after day , and again they wouldn't release me. I found my Nephrologists was in control of everything. So it was easy, I just waited for HIM to give e last orders and that told me where I stood.  I would think your Nephrologists trumps your gp. I would direct my questions his way.

The way I handle the fear of the cancer returning is I don't worry about it, just brings up my blood pressure which is of no help to my CKD. I put it in Gods hands and don't worry. I handed that worry over to God 16 years ago, took my hands off the wheel, completely. Instead I put my concerns with what I am dealing with today. You keep looking back and you could fall down, watch the road ahead. 

Wishing you the best in life.

I agree with your Nephrologists, when I feel sick I give some extra thought as to what I ate that day or the day before because it's usually from what I've eaten that "shouldn't" make me sick.

Beer normally doesn't affect CKD patients that way, not that ALL CKD patients are the same though. I'm wondering if any of the blood tests included anything for his liver, and if they did,where those numbers off?

At gfr 20 sometimes they allow you to go on the donor list for transplant. I would be looking in that direction, if needed.

Thanks for replying Fran. He didn't have any tests for liver this time but the last one he had the figures were bang in the middle of the normal range.

I think once again we are at least I, was expecting too much, He was feeling so good it just seemed like it should have gone up a bit more than 4 points. Still, I was reading a report today that said they followed people who had lost a kidney for 5 years and the GFR continued to rise steadily for the whole 60 months!!! I guess we are in for a long ride.

As to a transplant, I am more interested in the artificial implantable kidney that they hope to have on the market in 2020. Sounds amazing.

4 points higher? That's great, it's still climbing! Imagine 5 years of climbing, that can really add up! Let's think positive.

Yes, that will be so awesome when they have the artificial kidney available like they do pacemakers!

Yes, I've been watching the research on the artificial kidney project too. I'm certainly hoping it becomes a viable option for us by 2020!!!

Marj

Funny, that's exactly how I've conceptualized the artificial kidney--very similar to a pace maker🐶

Marj

But what will they call it?

"The Felt". ?

Felt has been used for centuries to filter liquids.

Any other suggestions for a name they can use,lol?

Whatever they call it, I call dibs on one from the first batch available!