Remaining kidney not compensating

[tantemorte]

Has anybody had their remaining kidney not pick up ANY of the slack?
That is the latest I've been told.
For 6 months post-donation my GFR has been appr. 50-55.
Then it slowly went up all the way to 68-64.
Until last November it dropped to 55,then bounced around in the low 50s until it hit 47-49ish.
My calcium is low,my PTH is double the normal,also sugar in the urine & water retention,I'm always exhausted.
The 'explanation' I'm getting is that the period of higher GFR was a fluke & that my kidney is not actually compensating for the loss of function from donating.
I'm 35.

[Clark]

Best wishes. You mentioned elsewhere you are dissatisfied with your follow up care. Do you have a primary care physician you have confidence in? Do you have insurance? Can you ask for referrals to other nephrologists and endocrinologists to get independent perspectives on the challenges you're experiencing?

[PastorJeff]

My creatinine at 9 months was still 1.6.  That means my GFR is in the 40's. My primary doctor had hoped for better at this point but says maybe that's my new normal.  All my other labs look ok.  I do have fatigue sometimes but I am 61 and that probably comes with the territory.  Also others have told me how their creatinine only came down after a longer period of time like two years.  So I am willing to be patient with my body and drink lots of water like my wife keeps urging.  I am paying more attention to my diet.  Keep advocating your cause with the medical people.  The squeaky wheel gets the grease.  I hope to hear better things about you (and me) in months to come.   

[Oldnslow]

It has been several years since I had my creatin checked but the last time I did it was 1.5 and had been the same previously.   The aftercare team told me it would probably stay at that level.   I was hoping it would drop lower but to my knowledge, it has not.   I may have it checked by my doc next time I go in.    My other vitals, BP, pulse rate, are all well within normal so I don't tend to worry about it.   I also get fatigued...worse time is at the end of the day in the easy chair with the tv on.   Boom, I am asleep.    Also 61 here so I recognize that territory you are referring to.

Oldnslow

[Fr Pat]

Dear "Tantemorte",
     Hi. I just "Bumped up" an older exchange of information about measuring kidney function, with some very helpful input from Dr. Freedman (Living donor). It appears to be important to distinguish between the ESTIMATED GFR (eGFR) and the more exact GFR test.
I hope this will be of some help.
    Fr. Pat

[tantemorte]

Sorry,but that link is not helpful at all....thank you for trying though.
I wasn't asking about GFR...I was asking about experiences with the kidney not picking up the slack.I have other symptoms besides low GFR,as I have stated.
I hear enough generalities from the nephrologist,whom I will be switching anyhow.
What I need to know is other LKDs similar experiences,preferable who are my age...if my GFR is this low at 35 with other obvious symptoms of the kidney not being able to handle the load,I do most definitely worry what will happen 10--or even 5 years from now. I do need to know if a situation similar to mine has been experienced,has anyone had GFR bounce up & down that much,have they had any other  side-effects & how did it progress/or not with time.
I'm very much afraid of the kidney being actually damaged by the overload...

[kdub]

Tantemorte,

I totally get your frustration! 

Depending on which labs are compared, you could make the case that my remaining kidney is not picking up any slack.  The variability of these labs is crazy!  I can't workout like I used to... but otherwise, I feel pretty OK.  Hope this helps!

_kdub 

[Rob_h]

Hi,

In some ways I am similar to you, and was a donor some 8 years ago.  I am 62.  My creatatine and GFR bounced around in the 1.5 area for creat. And between 45 and 50 GFR. I was a runner for some 30 years prior to being a donor.  After donation I was tired a lot, became a walker, worried a bit about it being the kidney.  Wondered if the donation was causing the tireness. 

But I guess that is about as much as my story can help you, as about 2 years after donation I became dizzy, tired, unsteady on my feet, a little mixed up.  Somewhat it did not help that I continued to have doctors look into the kidney function when I should have started sooner looking at other factors.  After two years of testing the major findings were, B-12 deficiency, and not some scary neurological conditions like MS, dementia, and brain tumor.  But it progressed, and about 2 years ago I was tested and  Dx with neurological Lyme, cronic. Further testing found the both MTHFR gene mutantions, very low adreanal function which I am now getting some help with.  Having the low kidney function has complicated treatment a lot, as I cannot easily get rid of the Rx I need to take, as well as the toxins created by treating the infection.   I would look into if you have the MTHFR mutations, about 10 percent t of the population has this and if you are part of that group it can perhaps be a factor in treatment for your tiredness.  I would also get the adrenal function tested.    Best wishes. I hope you improve. 

[tantemorte]

That's interesting, thank you.
I am a city girl so I doubt I even had a chance to contract Lyme.
I am monitoring my adrenal function as it seems to be not optimal.I wish I had a predonation level to compare it to, to see if it's lower than usual for me. I am currently under an endocrinologist's care, but she doesn't think it's too low (it's around 290-370 first thing AM & 130-170 at 4PM. It's the PM number that got me referred to her)...or maybe not low enough for medical supplementation. I'm waiting & seeing....
She also put me on B12,other Bs,biotin,vit D & iron...but I might need to take calcium,too,if the vit D won't keep it up. 

[JustAPyper]

I'm approaching 1 year after donation.  My creatinine is at 1.54. It has come down about 0.05 since surgery but I'm not really worried.  I don't have a kidney disease so if it wants to hang around at that level for the rest of my life I'm fine with it.  They said I'd get back to 1.2 eventually but I'm not so sure now after reading this thread.  I'm not surprised it rose since I did donate a kidney (50% of my capacity) and the tests are setup for people with 2 fully functioning kidneys.

I will just keep an eye on it with regular (annual) check ups.  I guess the test results can really be effected by how hydrated you are before testing.  How do you know how well hydrated you are anyway?

Regards.
JustAPyper