Donor with GFR 53 but transplant center would have gone forward--some questions

[EileenS]

I'm new to this forum.  I was scheduled to be a non-directed kidney donor on 10/27/20.  All tests prior to surgery were completely normal until my preop testing 5 days before surgery showed a GFR of 53 and on repeat the next day it was 59.  Based on this I declined to proceed.

My transplant center has since advised me that they would have proceeded with surgery because they tell me there is nothing wrong with my kidneys since my creatinine and creatinine clearance were normal.  I am shocked by this.  I am a nurse so I have a decent understanding of this medical information.  I have since done some further research about pre and post GFRs.  I see that NIH guidelines recommend donors have a preop GFR of at least 80, preferably greater than 90.  I am very concerned that my center would have taken me to surgery.  Other donors may not have the medical knowledge to know what their lab values mean and may  proceed with surgery that is really not safe/advisable.  I'm worried about donor safety at this center (and possibly others based on some stories I have read on here) and I want to do something about it.  Anybody know where to start?  I see that HSRA is the federal agency responsible for oversight of transplant centers but other than that I really don't know what to do, who to talk to, etc.  My gut tells me ultimately this would likely need to be a legislative change since "recommendations" from federal agencies and "guidelines" don't seem to be having much effect.

[Fr Pat]

Hi. I donated non-directed 18 years ago, but I don't really have any knowledge that would be helpful to you about this. You might ant to also post at the FaceBook page of "Living Donors on Line" and also "Living Kidney Donors Support Group" as those pages get a LOT more readers and responders these days than the web-site.

[EileenS]

Thanks for the reply, Fr. Pat.  I may be one of about 10 people on the planet not on Facebook though I may have to finally get on there.

[Fr Pat]

Yes, it might be worth it. If you wish you can restrict yourself just to the living donor pages. There is really a LOT of traffic there now. I have seen some posts get 20 or 30 responses. Often just "get well" or "congratulations" things, but sometimes people post with important questions.

[Michael]

There is definitely something wrong if the transplant team was going to move forward, knowing a donor loses 25% - 50% of their capacity. Frankly, your current GFR level puts you in the "mildly to moderately decreased" level to begin with.

Did you have an independent donor advocate (IDA) assigned to you? Ideally, the transplant team would have assigned an IDA to help you through the process and represent your interests.

Does the hospital have an ombudsman? This is someone at the hospital who helps to solve problems on behalf of patients.

Another possibility is to contact UNOS's patient services. While technically you're not a "patient," UNOS should be made aware of this transplant center's policies. Unfortunately, while UNOS publishes guidelines for such things, each transplant center can do whatever it wants and UNOS has no enforcement power. (888) 894-6361, patientservices@unos.org

[EileenS]

Thanks for your replies, Michael and Fr. Pat.  I guess I might have to crawl out from under my rock and do the Facebook thing.

I did have a donor advocate.  Can't say I had much rapport with her.  She is a social worker and with the situation I was in it seemed to me it would have been helpful if the IDA had some clinical background (perhaps a nurse) to protect someone in a situation like mine who might not have the medical knowledge to protect themselves.  It was really and truly just that one single lab that was off.  If I hadn't stopped it, no one would have.  All other testing throughout the process was normal. 

I will likely make some calls to UNOS and I may speak to the ombudsman at the hospital.  I'm trying to make sure I tread carefully.  This hospital is part of a university and they are known to be very conscious of any press so I'm afraid if they think I'm gonna make a stink (which that's the way I'm leaning at the moment) they will shut me out right quick.  I am not in any way against donation obviously nor do I want to damage the program but this has been an eye opener and I am very worried about donor safety at this institution.

And I am following up with my PCP and she is referring me to a nephrologist to further investigate my GFR (creat and creat clearance are normal--that was the reason the center told me they would go forward). 

[Michael]

Please let us know if there's anything we can do to assist you.

[sherri]

Eileen,

I commend you for doing your due diligence and making an educated and informed choice. This is the way the informed consent process should work. you may want to clarify if the number they were talking about is creatinine clearance or estimated GFR. Creatinine clearance should be >80 at most centers. Although even an eCFR <60 should ring some bells!

 As mentioned though, there are no standard of care guidelines. Each center determines their own standard operating procedures (SOPs) and are required to follow their own guidelines. I think in reality, the only time a transplant hospital will get called out is if there is a death of a donor, egregious error (transplanting an infectious donor organ into a recipient), or some other tragedy. Sad that a tragedy needs to occur before  a hospital program is investigated or shut down.


Through my travels on LDO and elsewhere, I have come across several donor advocates. I think a good contact would be Donna Luebke CRNP. She might be able to steer you in the right direction. I think there is a way for people to contact each other via private message on this forum. if I can figure it out will send you her email

https://www.cleveland.com/healthfit/2011/01/northeast_ohio_living_organ_do.html

[EileenS]

Thanks for your reply, Sherri.  The 53 and 59 lab values are my eGFR. 

[Michael]

Any news on making contact with someone at the hospital or UNOS?

In the meantime, I came across these research articles that might be of interest.

• A 2007 survey of U.S. transplant centers showing a large majority (67%) of centers had a minimum donor GFR of 80 or higher. Zero centers used a minimum of 60 or less. https://onlinelibrary.wiley.com/doi/full/10.1111/j.1600-6143.2007.01932.x
• A description of the 2017 KDIGO recommendations for the evaluation and care of living kidney donors, specifically their recommendations for GFR: "GFR of 90 mL/min per 1.73 m² or greater should be considered an acceptable level of kidney function for kidney donation, while donor candidates with GFR less than 60 mL/min per 1.73 m² should not donate. The decision to approve donor candidates with GFR 60 to 89 mL/min per 1.73 m² should be individualized based on demographic and health profile in relation to the transplant program's acceptable risk threshold."https://kdigo.org/wp-content/uploads/2017/07/Exec-Summary-2017-KDIGO-LD-GL.pdf (See "Chapter 5: Evaluation of Kidney Function" on page 1787.)

I sent an email to UNOS asking if their Living Donation policy (Policy 14) included a minimum GFR threshold for donor eligibility. No response. 

I hope this additional information helps in some way.