One Year Kidneyversary

[Jewels]

It is hard to believe it has been one year since surgery, it seems like a distant memory!  I feel absolutely great and my scars are barely visible.  I ran my 6th Half Marathon a month ago and have another on the calendar for September.  I eat right, exercise and all that good stuff. So all that is awesome, and I think how I feel is probably most important, but, my lab results were not as good as I would have liked and I am a bit concerned to see them go down a bit since my 6 month.

Blood pressure is low, no protein in urine and all labs look good except for creatinine and GRF...
Pre-donation:
Creatinine - .8
GFR - 139

6 month post donation:
Creatinine - 1.12
GFR - 53

1 Year post donation:
Creatinine - 1.21
GFR - 48

My coordinator said she would have a nephrologist look at the results and contact me.  At my 6 month all they said was "drink more water" which I do.  I did realize that I had 2 small glasses of wine the evening before the labs were taken, not sure if that would make a difference.

Curious if anyone out there has had results get worse at 1 year, I expected them to get better!

Thanks!
Julie

[Snoopy]

Julie,
  Congratulations on the kidneyversary.
  I had my own 8-month follow-up visit in May.  Before the visit, I was very concerned that my creatinine was, not only much higher than it had been pre-donation (I mean, I realized I only had one kidney now, and had half the "kidney power", etc.), but it was even slightly higher than it had been right after the surgery.  That, I really didn't like.
  However, the nephrologist told me the slight increase since right after the surgery meant essentially nothing, and I was in good shape in that regard.  And:  my creatinine pre-surgery and at my 8-month follow up were very similar to what yours are. 
   I'm not commenting about the GFR, because I'm always a little confused about how my lab reports mine.
    I hope everything works out for you but, at least creatinine-wise, that doesn't sound too bad at all (but I'm not a physician).
        Be well, Snoopy

[Orchidlady]

Congratulations on the one year mark, Julie! You are right - the time passes quickly. Keep us posted on the outcome of your results.

[Jewels]

I heard back from my coordinator (via email) and here is what she said:

The doctor has reviewed your results, the results are normal. The only thing he would like you to repeat is the urine test.  One question he had "were you on your menses at the time you collected?"   

I am curious why just the urine test, waiting to hear back.  I was 4 days prior to my period, so I am wondering why he is asking that question too!

I am slightly relieved to see the word "normal" but was still hoping for better numbers!

Thanks for the comments!
Julie

[sherri]

You may have had some microscopic hematuria, blood cells in your urine. This may occur around your menses or if you have had a recent Pap smear or anything that might put some trace amount of blood in your urine. But the best thing to do is ask the coordinator why the doctor wants to repeat. A thorough response would be, the doctor noticed such and such which may indicate w,y or z so he wants  you to repeat the urine. The easiest thing to do is to get a copy of your blood work and look it over.Keep results of any tests you have like blood work, urine, xrays etc then you can see any changes you have from time to time. You can see which numbers are abnormal and then ask to review those specifics with the nephrologist or your primary care doctor. I always find it easier to understand what the within normal limit values are and where I stand and what values they expect to be higher because of the lone kidney.

Keep us posted, Jewel and congratulations on the one year!

Sherri

[Jewels]

I thought I would post an update...I spoke to my coordinator today and it really reaffirms the need for us donors to have our own PCP and take ownership of our health.  The transplant center was great to work with before and during the surgery but now they really only seem interested in collecting the data they need to report (thank goodness for that.)

Now they do not want to repeat the urine test.  There was a trace of blood but since I was close to my period they are not concerned.

She also said the nephrologist said "they don't look at GFR for donors" because it is hard to measure accurately.  I guess I wonder at what point it should be looked at?? 

I am not overly concerned as I feel better than ever, blood pressure is low, no protein in my urine.  I am going to look for a new PCP that has an interest or perhaps specialty in kidney health, although I do not think I necessarily need to see a nephrologist at this point.

Thanks as always for your thoughtful feedback - curious what some longer term donors out there have seen their GFR and creatinine do over the years.

Happy Summer!
Julie

[Karol]

Happy Kidneyversary. Best wishes to you and sister! 

[Aries7]

Happy Anniversary Julie!

I remember when you donated, and I am amazed it has been a year already!

Best wishes to you and your Sister!

Linda