Looking for answers for my question from 'old timer kidney donors like me'

[debbie]

Hello to All.

I have a question regarding creatinine levels & GFR rate for those of you who are more of an 'old timer kidney donor like me'.  I was a kidney donor in 1992...to my sister...My story is in this site (Living Donors Online) listed 3rd from the top in the kidney experience section under Debbie's Story (warning- it is very lengthy)......

Do you have a low GFR?....What has or is your nephrologist or doctor doing about it?...What do you know & understand about this?....

I have done some research, but I would like to know how many of you are also at 3rd stage chronic kidney disease??? And, if so what other medical problems/diseases do you have in addition.

I am a 64 year old woman who is not over weight, and exercises & eats a healthy diet.

My creatnine as of March  2011 is 1.27 & GFR (Glomerular Filtration Rate) is 42. (my doctor's report states Stage 3 Chronic Kidney Disease).  This low rate for me is not new - it has been low for quite some time....

OTHER MEDICAL HISTORY:  I have Celiac disease, aortic valve
regurgitation/insufficiency/prolapse disease (moderate to severe stage =diagnosed in 1992 as part of donor workup & have had echo cardiograms since then to monitor), Hashimoto's thyroid disease, lymph-edema in both arms, & arthritis (back surgery last spring because of arthritis), cholesterol has been lowered with med considerably, & coronary artery disease (seeing cardio on Friday March 18 for results from latest heart test=cardiolite stress test to evaluate progression of disease), blood pressure high & on med to lower it.

Meds: spirano lactone/aldactone (for edema), amlodipine (channel blocker for
blood pressure), levothyroxine (hypothyroid disease), & pravastatin (cholosterol)....

It has been a long time since I have posted in here & I couldn't find my old
password to log in with it, so I had to re-register.  Otherwise I could have noted my older postings...

Please respond with answers to my questions...I would really appreciate your
input....

Thank you very much,
Debbie












     

[Michael]

Debbie,

You ask great questions about GFR, kidney capacity, and what technically constitutes "kidney disease" for someone who is a long-time kidney donor. I believe the challenge for the medical community will be giving you solid, research-based answers. Your situation (and mine... as I come upon my 20th anniversary as a donor in November) asks the basic question of what truly are the long-term health consequences of kidney donation. Unfortunately, the medical research hasn't caught up to your questions.

Regular LDO visitors and donor advocates like Cristy Wright and Donna Luebke have kept an eye on the medical research that has slowly been emerging. There are a couple of excellent message threads from the old message board that capture the latest understanding about GFR as it applies to living donors. Here are links to those threads:

https://livingdonorsonline.org/cgi/dcforum/dcboard.cgi?az=read_count&om=128&forum=DCForumID13&viewmode=threaded

https://livingdonorsonline.org/cgi/dcforum/dcboard.cgi?az=read_count&om=133&forum=DCForumID13&viewmode=threaded

And here is a link from Cristy's www.livingdonor101.com web site: http://www.livingdonor101.com/risks.shtml#kidney-disease

An important observation from one medical study is that some means of measuring kidney capacity (GFR) can yield inaccurate results for someone with one kidney. Specifically, the estimated GFR (eGFR) results are not reliable. eGFR is measured by drawing a blood sample and using a mathematical formula that includes age to estimate GFR. Measured GFR (mGFR) is a more reliable measure for kidney donors. This is a test that involves a 24-hour urine sample plus a blood draw. It's more complicated and time consuming but is really the only reliable way to measure kidney donor GFR.

So... the first question is whether your GFR was measured using eGFR or mGFR.

[debbie]

Hi Michael,

I finally went to a nephrologist - I am definitely in 3rd stage chronic kidney disease...

I am a bit depressed over having a definite diagnosis....And, in addition having all of the other diseases/problems that I listed in my first post - it's a bit depressing....I know what my sister went through all of those years of having kidney disease & the transplant surgeries (4 including mine) she went through.  I knew it & yet until I heard him say it - I guess it just didn't 'hit' me....It's very strange to think I am on 'the other side of the fence' now....Just having a bit of a down day today...I will bounce back again & be more positive - just not today...

I will write more about everything when I know more...

Thanks for responding Michael
Debbie

[WilliamLFreeman]

Debbie,

Please see my posting yesterday, "Latest on GFR."  The situation may not be quite as dire or worrisome as you think.   

Bill

[Oldnslow]

Debbie,

I donated 2 years 4 months ago.   I just received my lab results.  My creatin level is 1.5 which is quite a bit higher than yours.  According to the transplant center my level is considered normal for a donor.  { I guess that alone could be a downer if indeed it corresponds to a CKD level of 3}.   Using the calculators online my GFR is 51 or 50 depending on whether I used the MDRD or CKD-EPI method.   My age is 59.    I could be thinner if I ate less carbs and exercised more and probably if I traveled less.  Of course that would mean no job, so I opt for the employment.  Anyway, I feel OK.  BP is 120/80 and pulse usually around 68-70.   

The medical community needs to collect statistics on people with one kidney.   I don't think it makes sense to measure the health of our remaining kidney against a standard that is based on two kidneys.   Doesn't make sense.   

OK - Dr Donors....this is a prime opportunity for a medical researcher to apply for an NSF grant to figure this out (and get published, get the Nobel award, and all that stuff at the same time).

Cheers
Oldnslow

[Oldnslow]

I'm curious if anyone has tried any specific diet or exercise  regime to improve GFR?

Oldnslow

[Karol]

The AAKP has an article called "The Impact of Nutrition on the CKD Patient" that is for patients with Chronic Kidney Disease, but may also be helpful for anyone who is looking for a diet to help preserve kidney function. http://www.aakp.org/aakp-library/impact-of-nutrition-on-ckd-patient/

[Oldnslow]

Thanks Karol - will download this tonight.   My Creatin's been stuck at 1.5 for about 2 years and it sure would be nice to get it to drop a couple of points.

Oldnslow