More things to consider

[Prelude_Sarah]

Hey all, I had a split function renal test done yesterday to determine the individual function of each of my kidneys (it's called a Mag 3 scan).  I found out today that my left kidney functions at 47% (the one I'm donating) and my right kidney functions at 53% (the one I'm keeping).  I'm just wondering, should I be concerned about the discrepancy in functionality between my two kidneys?  My coordinator tells me that my individual kindey functionality is within the right margin to still donate, but how far within the margin am I?  Any thoughts?  Thank you so much guys.

Sarah

[Aries7]

Hi Sarah!

Let me start by saying I am not a medical professional. I also did not hear of this test until after I dontated and I do not believe I had this test. (I did ask my coordinator about this post surgery and she said something about it being a very expensive test??) Anyway, I have heard of the kidneys functioning at different percentages, and it is my belief that you would want to keep the kidney with the highest function, so in other words, in your case you would want to keep your right kidney. I am not sure what the maximum difference should be as far as the percentages of each kidneys funciton.
I am hoping others will chime in on this as well, but this is what I have learned. I also encourage you to ask your coordinator about anything you are not sure of or any questions you may have. You could also ask your personal doctor, as he or she would not be directly associated with the transplant doctors.

Linda

[Prelude_Sarah]

Hey Linda!  Thanks for responding.  When they ordered this test, I was a little surprised that it had never been mentioned before.  I looked it up online and it appears as though this sort of test is not a typical part of protocol for considering a live kidney donor (someone correct me if I'm wrong).  I'm under the impression that the test was prompted by the fact that I have two arteries on each of my kidneys, instead of just one like most people.  I'm thankful that I had the test done, but I have to admit that it makes me worry a little more for some reason.  I've found that I cannot rely on the information that my coordinator gives me, so I'll have to try to get a hold of the doctor to talk to him about this.  I'll let you know what I find out.  But in the meantime, hope people chime in on this as well :)

Thanks !

Sarah

[Kid Sister]

Hi, Sarah -

The "split function" test is part of the standard donor work-up at the hospital where I donated.  I had the test about halfway through the testing process.  Unbeknownst to me, the results came up 43/57.  My surgeon wanted to be absolutely sure that the results were accurate, so he had the test repeated - with the same results.  Two days before my scheduled surgery, I re-signed the consent forms for a RIGHT nephrectomy so they could leave me with the "stronger" kidney.  I worried that I was somehow giving Susie a "lazy" kidney - but it is functioning beautifully and, 2 1/2 years post, her creatinine is still at 1.0 (as is mine).  I think that some discrepancy in percentage of function is typical - it certainly hasn't proved to be a problem for me or my recipient. 

Best of luck to you in the next few weeks - keep asking questions . . . hopefully it will help to lessen some of your anxiety.  This is an extraordinary journey in every way - but well worth the trouble!  No other life experience compares.

[sherri]

Interesting (and disturbing) that there are no set protocols or FDA guidelines for evaluation of donors. It seems like each hospital does whatever tests they feel are necessary and also make their own standards in terms of cut offs and risk factors. At Hopkins, I was never offered a test to check the individual function of my kidneys nor was I aware that a test like this is available until after the surgery. I would have liked to have known the percentage, hoping that I kept the stronger one. This to me, is more of a consent issue, even over the surgical details that Donna described in a previous post. When I signed my consent form, I was under the impression that my kidneys would be able to compensate and that full testing was done to determine this. If there are other tests available, even if they are expensive, and not offered to the donor patient, that violates consent, as it did not allow me to consider all options.

What hospital did you donate at? Were you satisfied with your care? I would like to see a "Consumer Report" type of assessment of each transplant center so that donors (and their recipients) can choose what level of care they would like to have. Something that maybe we can do on LDO as we have so many donors in one forum who can respond.

Sherri

[PhilHoover]

I'm surprised your medical staff/living donor coordinator(s) didn't explain the tests to you beforehand.  I had every single text explained to me beforehand...had the opportunity to ask questions, and even got to see all the results....

But then again, UAB Renal Transplant Center was EXCEPTIONAL on every level.

Phil Hoover
Chicago

[Donna Luebke]

Phil,

From what I have read over the years, UAB seems to do a great job in taking care of their donors including giving donors a billing accont number so if they return home and need care they are to send the bill to UAB.  Please share more about their program so can put other to shame. Peer pressure can do wonders.   

I have a new donor buddy whose donation was last June.  He has had a bumpy road.  Was appalled that the program where he donated knew he was having problems and never once called to check on him.  He always had to call and got a run around.  They basically made him feel like a whimp--he is one of those donors with chronic nerve injury.  Not a whimp--just asking to be taken care of.  He found new physicians closer to home but so unnecessary how they treated him.  The Physicians' Asst at the University Medical Center even berated him as if he had drug seeking behavior.  Not so--he is all holistic and alternative therapies.  Guess they did not bother to know him as a person.   

I have not aware of this split funtion test.  I will ask a few nephrologists I know to get their view of its reliability/validity. 

Sherri brings up a great point in that there is no standard for donor evaluation (no standards for anything related to donor issues/care).  Is not the FDA to blame.  Maybe the ASTS (American Socieity of Transplant Surgeons).  Their members are quick to say lay people should not be telling them what to do.  I say--we have what they want and we very well can tell them what we need.  Some of us had to remind them we are not lay people.   

[Prelude_Sarah]

Thanks for the responses everyone.  I've been told that the hospital I'm donating my kidney at would accept a difference of up to 10% function.  I've been told it's nothing to be concerned with, that the difference in kidney function is normal.