Confused about post-donation tests

[RKEM]

This is probably my only grievance with the whole donor experience: not a whole lot being explained in terms of metrics. The other week I went for my six months check-up ... which involved a blood and urine test. At my check-up I was told that something ... which I am guessing is creatinine was 87 and that this was satisfactory. But that doesn't give me a whole lot of information. What are the normal levels (I'm a woman, 37, if that matters)? I do believe this was slightly better than last time (I glanced and spotted a 90 on the chart) ... how long does it keep on improving?

Thanks

[Fr Pat]

     I agree with you. I'm 14 years post donation (kidney) and most of what I have learned has not come from the transplant doctors but from other sources. So you do have to do your homework. Sometimes just hitting "search" for such topics as "creatinine levels" etc. can lead you to informative articles, but it does take patience. I do strongly suggest two things:
--- keep good records of all the past and present test results. Always ask the doctor for a printed copy to keep (even if you don't understand it all). That way you have something to work with, and you can compare changes that happen over years.
--- If you don't have one, buy a good at-home electronic blood pressure tester. Read and follow the instructions carefully, and take and record your blood pressure at least twice a week, and carefully chart the results. Developing high blood pressure is an increased risk for kidney donors. The test done at the doctor's office is just a one-time reading. Seeing what your blood pressure is over a long period, and whether it is changing, is really valuable information for you and the doctor to have.
         best wishes,
                Fr. Pat

[sherri]

Before going for any medical appointment, have a short list of questions to ask that are of concern to you. Numbers also aren't meaningful unless they are put in context. you may want to know what your blood pressure is at your visit, your weight, your creatinine (which in the US you will usually see a number between 0.6 - 1.2 for males, 0.6 to 1.1 for females without kidney disease). these are basics which you may want to start with. An important piece of information, especially for donors, is what was my pre donation blood pressure and creatinine. This will help see trends in blood pressure and kidney function. You will also want to make sure there is no protein in your urine which may indicate and issue with the filtrating system of the kidney. Find a good PCP or nephrologist who you could see once a year for your blood work.

Good luck.

Sherri

[CK]

My PCP took over right after the donation (even when I still had post-donation follow-ups at the hospital) and began monitoring everything for me - which was nice, because I could get the information consistently and knew someone was keeping track with my best interests in mind (vs. donation statistics).  In many cases, you can have access to your information through an electronic medical record (here, all patients can see their medical information, lab results, etc any time) if you want to follow your numbers yourself. 

I think my PCP over-managed me a bit, but I appreciate his concern and it's nice to know someone is watching.  Maybe ask your doctor to do the same.