Low GFR 12 years post donation

Jonesdonor2004 · January 12, 2016, 11:03:53 AM

I am looking for some advice and thoughts. I have low GFR 12 years post donation (I am 39 now, healthy, runner, no hypertension, not a all overweight). Last year 58 and this year 53. I am just starting to learn about this as last year my PCP said 58 was ok. I do not know my pre-donation GFR or immediate post-donation GFR's but I have calls into my transplant center and my doctor. From what I have read, GFR often decreases immediately post-donation, but usually goes up then.

My PCP said to come back in two months to retest. Should I ask to see a nephrologist now? Any thoughts on my situation?

My apologies if this is a frequent topic, I just joined today. So, if you can point somewhere, I'm happy to go read another post. Thanks!

Clark · January 12, 2016, 11:42:44 AM

Welcome! Usual disclaimer, I'm not a doctor of medicine, see your primary care physician. No worries, the GFR < 60 threshold defining end stage renal disease is controversial when applied to living kidney donors. It'll be a fresh topic every time it comes up. No worries, too, on a value in the 50's and a recommended retest in a couple of months. Clearly your PCP isn't worried. Deep breath.

Check yourself: Any symptoms? Feeling well, and nothing new an issue? Adequately hydrated? Urine pale yellow to colorless? There's really not more to be done or to be concerned about now. Watchful waiting is likely to be a long term strategy. Further testing is needed to know more, but not indicated without sudden adverse change.

One way to picture kidney donation is aging 30-40 years in a day. Transplant teams tend not to describe it this way, because it's only slightly applicable in that after maturity is reached, nephrons are typically lost at a fairly steady rate each year. You donated at about peak maturity for most of your body's parts, including your kidneys. The next day you had the nephron mass you might have otherwise expected in your 50s or 60s. Not necessarily problematic, but closer to the edge. A decade on, you've reached the arbitrary threshold of functionality used to categorize disease status in those with a range of dysfunctions. We don't have dysfunction, we have explainable reduced nephron mass on a specific date. Many nephrologists are debating the applicability of this threshold to living donors.

None of this can indicate what the future holds for you. It can't be comfortable to be told your function has declined. I hope the transplant team can provide pre and post surgical values for you from 12 years ago. That will help in deciding next steps, but the retest in two months will be even more indicative of your current situation.

Best wishes. Do please let us know what you learn along the way. Take care.

Jonesdonor2004 · January 12, 2016, 11:53:50 AM

Thanks. I totally understand what you are saying. I had read a bunch of studies this am on the topic of post-donor applicability of the normal scale. I just learned my Creatinine has also increased to 1.3 (female). No symptoms really and I am generally really well hydrated.

I'll tell you what is making me incredibly angry. I got this by letter, and when I called, I asked to talk to my PCP and his nurse called back. She answered some questions, ran to ask him some. When I asked why I couldn't talk to him when that's what I requested in my voicemail...she says, well, we just don't do that. Is there something I haven't answered? Um, yes, why does he think 60 is normal, what have my levels been for the last 12 years, is there something I shouldn't do before my next test (I read online strenuous exercise, meat, and other things aren't recommended - I had just run when I went in), just talk to me about this. Ugh, vent over.

sherri · January 12, 2016, 05:52:40 PM

Jonesdonor,

Since my donation 8 years ago, I generally follow up with a nephrologist so I can have my questions answered. I have my labs drawn prior to my appointment so I can discuss the results. For several years I went to the nephrologist who I saw as a second opinion prior to my donation. Sadly, he had gone on to be a hospitalist. I have since been to others but I just always liked his bedside manner and the way he explained things. I may just seek him out and ask if he will look at my labs.

My insurance has never denied the claim. You may want to consider this so that your numbers can be followed and you have someone to answer your questions. Now with electronic health records it is very easy to see your labs (even Labcorp you can set up your own account) so you can follow and understand the numbers. We try to look at trends not numbers in a vacuum.

Keep us posted.

Fr Pat · January 13, 2016, 06:15:46 AM

Dear "Jonesdonor",
I'm not a medical professional either, but have read a lot since donating a kidney 14 years ago, at age 56 (I'm 70 now). One thing that I learned is that the GFR # we usually get is the "estimated GFR" (eGFR). To get the more exact reading of the GFR a more complicated and expensive test is done, and there can be a big difference between the "estimated" GFR and the real one.
A doctor who is also a kidney donor once explained on this site that while some doctors look at a number (GFR or creatinine), check a chart, and then declare "kidney disease!", other doctors look at the whole person and consider the test numbers as one among many important indicators, as noted in the postings above.
I'm in Japan now, and consulted a kidney specialist here a couple of years ago (with the help of a fluent translator). Although my eGFR has been in the 40s for the past 5 years, the kidney specialist (like my previous doctors) was not greatly concerned, taking into consideration my lack of one kidney, my age, and the general physical examination. As far as how I feel, I still run a half-marathon or two each year (and was running full marathons until I got too slow a few years ago. I do my work and feel fine.
So (as far as I know) it is very good to be watchful and concerned, and take good care of yourself (diet, exercise, etc.) What the GFR numbers actually MEAN for me is still something of a mystery to me.
Clark, I remember a few years back that there was a long and very informative conversation on GFR, with lots of clear explanation for a doctor/donor. I could not locate it myself now. Could you possibly find it for "Jonesdonor"? I remember that it was very informative (to me at least).
best wishes,
Fr. Pat

Jonesdonor2004 · January 13, 2016, 01:59:46 PM

Since writing this, I believe I used to be on this board around the time of my donation in 2004 asking questions and offering advice - my username - no clue. But, Fr. Pat's user reminded me, and I think Clark was around then too. Crazy it's been that long. Thanks everyone.

I reached my transplant coordinator - who I was surprised to learn was still there! She gave me all kinds of great general information and suggested a 24-hour urine would be a better test. My pre-donation GFR was 120. Funny how you forget things, because I now remember them saying I kind of had super kidney function when I was going through the donation. They generally expect 70% of pre-function - so for me 84. So, I've been low for at least 3 years now. But, they said it still may not be concerning if all the other tests are ok.

I talked to my doc's nurse today and told her I wanted the 24-hour urine and explained what Mayo said (oh the horror, they hate to hear "Mayo" - why always the automatic negative reaction?). I will go back in two months, do the test, and I told her if it was still that low, I would like to go on to a nephrologist. She agreed that would be reasonable and probably a good idea to establish a relationship.

Thanks everyone for talking me off my ledge!

Clark · January 18, 2016, 08:54:10 PM

News:

Low GFR 12 years post donation

Jonesdonor2004

Clark

Jonesdonor2004

sherri

Fr Pat

Jonesdonor2004

Clark