Renal function after donation

[krod]

Hello All,

I donated a kidney to my brother nearly a year ago.  Now the nephrologist says I have stage 3 kidney disease because my creatnine is at 1.28 and my kidney function is 45-50%.

Has anyone else experienced this?  He says it is not normal for my kidney to not have increased in function after donation.

I am trusting God in this, but I need to know if I am alone or the 1% I've read about.  I am healthy, active and health-conscious, but I will take any knowledge you can share.

[sherri]

Krod,

I'm sorry to hear that your creatinine is now higher than expected after kidney donation. This is certainly stressful for donors and I can understand your concern.

 I am wondering if the nephrologist who diagnosed you with CKD 3,  is basing the chronic kidney disease diagnosis  solely on the slightly elevated creatinine or have you had other testing done to check your GFR (glomerular filtration rate), creatinine clearance or other diagnostic testing. In addition are you having any protienuria or micralbumin in your urine. How is your blood pressure? were you dehydrated when you had your blood drawn, had you exercised right before (this may increase creatinine). What was your creatinine post surgery, one month and 6 months? It should have been tested through your transplant center. Is this 1.2 higher compared with your previous tests. What was your pre surgery creatinine and your GFR? We should be looking at trends and not just one number in a vacuum. So don't get nervous just yet. Can you repeat just to make sure this wasn't a fluke if your creatinine was never at this level.

Some kidney donors have a slightly higher creatinine which may or may not signify chronic kidney disease. This is one issue with lack of research on long term follow up for kidney donors. We may have a higher creatinine without chronic kidney disease and the criteria used for patients with two kidneys may not be applicable for donors. Insurance companies do this as well and often that is how living donors end up paying more for life insurance or are denied.

You can contact your transplant center and ask to meet with a nephrologist. Make sure to bring all your lab results and any other tests that were done. Your transplant center is responsible to keep track of kidney health 6 months, 1 year and 2 years post surgery and report it to UNOS/OPTN. It is very important for this data to reach your center so that long term follow up for donors can be studied.

Also, please repost this on the forum section so that others can reply. It is the next section. And most important I really think this needs to be investigated further. It really may be no cause for alarm but anxiety provoking nonetheless.

Keep us posted on how this works out for you.

Sherri

[CK]

I would agree, I think you need more information. It would depend on what your function was with two kidneys and how much that has changed after donation. I would also wonder if it matters...many people with kidney disease live happily in Stage 3 for their whole lives. Assuming you take good care of yourself, it isn't likely the one kidney would deteriorate in the absence of a disease, so you may be fine.

I would sit down with the nephrologist or your PCP and ask lots of questions.

[sherri]

Krod,

Also just wanted to draw your attention to a post (2nd one from the top on the forum section) Latest on GFR (March 2011) by William Freeman. Bill is a physician/ living donor and is a great medical resource for donors. He has been a frequent participant on this forum. You can also email him privately if you have any questions. Bill explains a lot about GFR and living donors. You can print it out and take the information with you when you see your doctors.

Hope this helps.

Sherri

[torrxv6r]

I would have them check it again.  There are several reasons why your Creatitine is elevated.  My husband was diagnosed with Stage III with his GFR at 38.  He saw a dietition (most insurances will pay for if you have a diagnosis of stage III) and changed his diet to eat right for your kidneys.  When he went for his last visit, all of his labs were back to normal.  He will go back next month and repeat his labs again, but he is optimistic that his renal functions are still good.  Hope this helps.

[tantemorte]

I have a similar problem.
My GFR after for 6 months post donation was in the low 50s.It crept up to 64-68 for a year or so but dropped abruptly to low 50s again & now it hit 47-49 (I donated July 2010...last November (2012) it was 64,3 months later it was 55 and the latest two tests,both in September,were 47 and 49.
I also have low calcium,double the normal acceptable PTH,low vit D,water retention and at the latest,sugar in the urine.
Now I'm told the improvement was a fluke & that my kidney is not compensating at all.
Sugar in the urine for a non-diabetic can apparently be because the kidney is overloaded...and overload is obviously the reason for the fluid retention.
What I'm worried about is the overload damaging my sole kidney...

[tantemorte]

And I'm 35,donated at 32.
The nephrologist hemmed & hawed & tried to brush it off by saying 'gee,anything can happen after donation'...acting like it's perfectly normal & trying to whitewash the timeline of results by saying different labs count creatinine differently,so different lab results actually mean the same thing??!! He was attempting to convince me that the improvement never happened---because then the drop didn't happen either.

Not happy with my so-called 'follow-up' care......

[elephant]

Dear krod,

My creatinine has been a little high since my donation two years ago.  It has varied between 1.15 and 1.31.  This appears to be my "normal" level (as long as it is not rising)   I do keep records of my blood test results, since some doctors become concerned.  There are no other indicators of kidney dysfunction in my case.  Since i'm now taking a medication that is potentially nephrotoxic I get blood work every 3 or 4 months.

There are lots of prior posts on this issue that you may wish to read and may find helpful. 

As a middle-aged woman my level would be expected to be lower, but that is because women usually have less muscle mass.  I am athletic and lift weights and this is known to increase serum creatinine. 

Love, elephant

[res5137]

Just to let you know.... IF NEEDED,  all the transplant centers will place a living donor at the TOP of the list for a cadaveric kidney, if the living donor needs one...

NO WORRIES, TAKE CARE OF BUSINESS, YOUR HEALTH, and do NOT worry! You will be cared for, and valued, and receive a kidney... if you need it... although I sincerely believe you will not...
Meanwhile.. do everything required of you to check this out... Be Well, Stay Well, Living Donors are very special, very valued people.

[Fr Pat]

     Living kidney donors, if they ever need a kidney transplant, can get extra "points" that will move them HIGHER on the waiting list for a kidney from a deceased donor, but not to the TOP of the list. (Also, it is up to the donor to make SURE that their previous donation is noted in order to get the extra points. It does not happen automatically.)
  best wishes,
    Fr. Pat

[stevewin@windstream.net]

Krod, Learning and living is the best way to increase your quality of life. I have had a similar situation, my numbers vary a little from yours. I have,  since donating to my brother in spring of 2011, joined this group and a couple on facebook. My advice to you , get copies of your lab work and tests before and after the donation from the center/hospital you donated at. Keep copies of all lab work after donation, put this info in a notebook. keep asking questions, the internet is great and this site also. Remember, be careful of generalities, dig into articles. Live, laugh and Love. This life is all we have. It is up to each one of us to live life to the fullest.  Steve

[Karol]

Just to let you know.... IF NEEDED,  all the transplant centers will place a living donor at the TOP of the list for a cadaveric kidney, if the living donor needs one...

NO WORRIES, TAKE CARE OF BUSINESS, YOUR HEALTH, and do NOT worry! You will be cared for, and valued, and receive a kidney... if you need it... although I sincerely believe you will not...
Meanwhile.. do everything required of you to check this out... Be Well, Stay Well, Living Donors are very special, very valued people.

The living donor gets an extra point which improves their wait time, but they are not moved to the top of the list. They have to wait for the right tissue match, like everyone else, and this is something that cannot be predicted.

[kdub]

KROD,

Like you, I donated to my brother about a year ago.  Creatinine is now 1.1 - 1.3.  PTH is high, Vitamin D is low.  These are all expected outcomes for a kidney donor!  Weather or not that is a good thing, I cannot say.

See the following study, which shows various lab results pre/post donation, and also has control data as well:

http://127.0.0.1:2976/Kasiske%202013.pdf

I recommend staying very hydrated, it can dramatically effect your creatinine, which leads me to believe it can also effect your remaining kidney's ability to keep up. 

YOU ARE NOT ALONE!

_kdub

[Donna Luebke]

These questions/concerns about post-donation kidney function are not new.   I donated in 1994.  I am 55 years old now.  My creatinine has never been above 1 and last was 0.7.  A nephrologist told me I must be someone who had several million nephrons (functional powerhouses of the kidneys) so when they took one kidney, I still had enough to maintain what looks like 'normal' kidney function.   There is no way to know how many nephrons someone has in one kidney.  If the kidney workup looked good and there was no compensatory increase in GFR post-donation then yes, you should be concerned and so should the primary care provider/nephrologist.  It is not that something happened after donation but kidney function declined due to the loss of one kidney at time of donation--and the remaining nephrons did not compensate for this loss.  Aging with a reduced GFR/kidney function is worrisome.  Nephrologists do know this-is the basics of their training.  Explaining kidney function and how a kidney compensates for loss of nephrons should be part of the pre-donation education.  Is critical to consent that we know what we are losing and how this may impact our health short and long-term. 

The electronic medical record will keep track of our GFR--and note which Stage based on age, gender, race and creatinine.  Key is that this information then guides our care so no one does anything to us that will harm our lone kidney.  I have a new PCP who trained at Georgetown.  I was impressed when she said "I know you know this, but please be sure to remind me that you only have one kidney so I never give you anything that will harm it or that I reduce the dose. "  We all need to monitor for disease, drugs or dyes that will harm us.  GFR needs to be >60 to be considered normal or OK.   

There are key questions that I learned we should all be asked prior to donation.  Where you a full-term baby?  What was your mother's health/diet--did she get enough protein?  Kidney development occurs primarily in last trimester.   Maternal nutrition impacts the number of nephrons we might have.   I am grateful for a nephrologist who met in my travels and who has been a good friend/teacher.

Agree that should get copies of all tests.  Do take care of health for the long-term and find a provider who gets the issues.  Abnormal labwork should be treated and not accepted as 'new' normal just because have one kidney.   Best to all. 

[tantemorte]

Thank you, Donna,that was actually very helpful. I wish my neph would be this informative. The nephron number would certainly explain it. I will continue to seek proper attention, starting by finding a new neph... even if I have to go to the other side of the city (Toronto is a BIG city and I don't drive ).