New and a question re estimated vs. actual GFR

[bevvy5]

I just found this site and have been reading and searching through. 

I have read the posts re GFR and the various ways of estimating and actually finding out what it is. 

My question relates to being a potential donor for my husband.  He is currently a hemodialysis patient, has been for three years.  About the time he started dialysis, routine blood testing revealed that my eGFR was 59, (currently 63).  My family physician told me that I would not be considered as a donor.  At the time my husband had other issues that would not have allowed him to be considered as a potential recipient.  Those have now been resolved.

Long story short, I called the transplant folks in our province (we're Canadians) who said that they would need a renogram to determine renal function.

My question is, how far out can eGFR be from actual GFR?  The transplant folks seem willing to start some testing.  Is there any chance at all?  I should mention that I am 52, BMI of 23, no hypertension or diabetes type issues, non smoker, healthy as a horse really, other than this "reduced" GFR.

Thanks in advance and I hope my question is not a stupid one!

[CK]

I'm not sure I have the answer, just wanted to say hi!
 

Other people on here are way more knowledgeable, but I think they estimate GFR from your creatinine level, if I'm not mistaken. In order to donate I had a Glofil test (they inject you with some radioactive stuff and then take blood at set intervals to see how fast your kidneys excrete it)so maybe they could do something like that.

I was just reading a study from somewhere or other that said that they found that donors with a GFR less than 80 may be at risk for long-term issues.

That's my very uneducated information. I think you should ask the people at the transplant center.

[dodger]

Bevvy, hi and welcome.  What you want to do is a wonderful thing for your husband.  But, there is a good possibility you will not be considered at your age.  Anything below 60 GFR is considered the beginning of renal failure.  You can continue to have a very long life and never have a problem, but you need what you have.  You could have had illness as a child or young adult, flu, or was just born with a lower GFR.
Remember, after donation you have half of what you started with.  You will gain some function after donation, but only about a third at the most at your age, so if you end up with about 30 GFR and at the most add 10 GFR, you will then still only have 40 GFR.  I don't think it is in your best interest to donate and really doubt that any transplant center will either. 
I hope this isn't too disappointing but you as the primary care giver need to continue to be "as healthy as a horse".  There are many other sources you can research to find a donor and this site can help direct you in those directions, you may need to start a new thread asking for that direction.
Best wishes with your journey and I hope for a great outcome for your hubby. 

[bevvy5]

Definitely at an actual GFR of 63, I would not be a potential donor.  However, I am being told that it is worth testing as my actual GFR could be high enough - they want at least 80, of course.  I just can't seem to find any information about "error rates" between eGFR done with a blood test and actual GFR tested differently.  The post I read here about calculation of GFR seemed to indicate that there was a difference but didn't give any sort of numbers.   

However, they are willing to do the testing, so I guess we will see.  It's probably a case by case thing so perhaps impossible to give any estimates.  I was hoping there might be someone who had experienced similar numbers or gone through this type of situation that might be able to shed some light.

And neither my husband or I are setting ourselves up for disappointment.  We're at the very preliminary stages to see if this would be a possibility and know it's likely a fairly long shot.

Thanks for the hellos and support - it's appreciated in this journey.

[sherri]

There is a post right on the forum section from William Freeman titled "Latest on GFR". Bill is a physician and also a living donor. He is great at understanding all the intricacies about GFR and other medical related issues and may be able to give you some guidance. You can private message him and ask. You can also make an appointment with a nephrologist outside the hospital (not sure how this works in a socialized medical system in Canada) so you can get an unbiased opinion about your kidney function and also ask for some studies that may be helpful for you to compare eGFR form creatinine and a Glofil test. You may also want to get some guidance health wise for yourself if you do have a low end GFR of things you can do to protect your kidney function, like watching your blood pressure, maybe some diet changes (watching protein intake), not using NSAIDs etc. This may be a good opportunity for you to protect your kidneys as well. The National Kidney Foundation here in the US might be a good resource for you also. I think they are kidney.org.

Good luck and let us know what you learn about the accuracy of the test and comparison.

Sherri

[brenda]

Please proceed with great caution. I would strongly recommend you get all test results reviewed by a nephrologist not associated with the transplant center. My recommendation comes from my own experience. I donated a kidney to an old friend on 5/17/2012 at Georgetown University Hospital.

Prior to donation, my GFR as estimated by serum creatinine = 67. I had two 24-hour urine tests; one estimated Creatinine Clearance = 30, the second = 111. Renal ultrasound was normal. 10 months later my Serum Creatine eGFR =  34, 24-hour Creatinine Clearance = 50, and a renalgram estimates my GFR = 45.

These are kidney function levels that should not be seen by any donor until she is in her 80's. I am 49. Georgetown is silent. The nephrologists here in New Mexico tell me I should never have been cleared for donation.  Regardless of what should have happened, I am not in a good place as far as kidney function now.

I would never have had a different surgery without taking my test results to a second facility. I - and I believe most people - treated the donation as if I were not the patient. I allowed my recipient to decide the center even after I had serious concerns about Georgetown. I never asked for my labs, but relied on the common belief - one repeated by my PCP - that I would not be allowed do donate if I were in anyway a marginal donor.  I urge any prospective donor to get all labs and to have them reviewed by an independent physician just I would recommend any patient do for any surgery.

I do wish you and your husband the best in this process, however it plays out for you.
Brenda

[sherri]

Brenda,

I am so sorry to hear how kidney donation negatively affected your health. The entire set up for living donation makes it very difficult for donors to get unbiased opinions. Ultimately, the hospital views the recipient as their patient who needs to be treated and the donor as a treatment. Donors definitely need more protection and independent advocates. Have you taken any action against the hospital? How are you being treated now for decreased kidney function? And has this effected your ability to get insurance coverage or coverage at a higher rate?

Thank you for sharing your story.

Sherri

[Aries7]

Hi Bevvy,

I really have nothing to add, as I think the others here have already given you excellent advice. I just wanted to say hello and welcome you.

I will say I agree with what others have said, I think you should proceed with extreme caution, as you do need to put your own health and safety first. I do wish you and your Husband all the best.

Linda

[Aries7]

Brenda,

I just wanted to second what Sherri said. Thank you so much for sharing your story.

I think it is so important for donors and future donors to hear what you are going through, and realize the risks involved. You are helping a lot of people by sharing your story. I truly do wish you all the best.

Linda

[bevvy5]

Wow, that's rather disturbing.  I think things work a bit differently here in Canada.  Here you have no choice of where you go, there is one transplant agency for our entire province and it uses two hospitals province wide.  The donor and patient sides are completely independent, and hubby's nephrologist will not be involved in either side.

It has definitely been stressed that my health is the first priority.

[elephant]

Dear bevvy5,

My estimated GFR based on serum creatinine was also quite low.  In my case this was a function of relatively high serum creatinine level from being very muscular, not from kidney failure.  The results of the Glofil test were significantly different than the eGFR. 

love, elephant