donated kidney in Jan and have questions

[sgrant1158]

Hi All

Background first: donated my left kidney jan21, 2014 to my brother in Florida (I’m from Massachusetts. They put me under 1.5 hours to soon, due to a test they forgot on my brother. So 4.5 hr. surgery took 7.5. Woke up with massive bruise on my right side. Noticed numbness half way down left leg going up to groin area. On third day after surgery notice left testicle hanging 4 inches lower that the right. grf before surgery 88.

I have had 5 blood test. 2 after surgery showing gfr 54 and 51. Then went to a kidney specialist and had blood work and it showed gfr 70. I returned to Massachusetts in April and had 2 more blood test with my doctor showing gfr down again 54 and 57.

I am tired a lot and have pain in surgery area. Leg still numb and have passed out once and almost again last week. I drink lots and lots of water per doctors’ orders.

Told numbness might not ever go away and testicle hanging is here to stay.

Question: Am I in stage 3 failure?
I have a doctor’s appointment on Tuesday with new blood results coming. What should I be asking?

Any help please

Steven Grant

[elephant]

Dear Steven,

That's right about where my blood values have been since donation 3yrs ago.  It is my new 'normal' post donation.  I'm female so it would normally be lower than for a man.  But, I am more muscular than average and this will tend to lower the "EGFR" - the "E" is for estimated and this is what you get from blood tests. Don't get upset, it may be your new 'normal'.

I was unusually tired for several months after surgery too, make sure you get plenty of rest. 
Also make sure you have your Vit D , B and folic acid levels checked.  They can get too low in kidney donors, and this will lead to fatigue.  I take supplemental Vit D, B and folic acid now.

I don't know about nerve pain, but have heard of people who have had that problem after surgery.  I would not give up on trying to find solutions for it.  Hope someone here has ideas.

Love, elephant

[CK]

I believe that all of us have a much lower GFR with one kidney, though mine hasn't been measured, only my creatinine, which is at .9, normal.

The outside of my left thigh was numb for over a year, I mostly have feeling back in it now-the surgeon said a nerve probably got traumatized a bit during the surgery but the feeling should return and it did (or maybe I got used to it, I can't quite tell, but either way, it doesn't bother me anymore).

As for the testicles, I'm female, too, so...

[poodles]

This article might help explain egfr in living kidney donors.

http://m.cjasn.asnjournals.org/content/3/6/1608.full

I got a lot of help with my surgical tramas from a rebab physiotherapist, rehab Pilates and sports rehab specialists. Suggest you continue to follow up yourself. These specialists are used to dealing with surgical issues and can tell you if you need to go back to your surgeon and can write a report if necessary.

Hope everything works out. It may take some effort on your behalf but it's part of the donor journey few talk about.