Hi Kidney Friends,

I am a heart transplant of 19 yrs and am in stage 3 kidney disease.  But, it is not me that I am concerned about.  My 16 year old ggranddaughter has a damaged left kidney with 23% function. Her right kidney is functioning at 73%.  She is going in for a surgery to see if they can correct kidney reflux in hopes they will not have to remove the kidney.

Can someone help me understand the function numbers? No one has really explained in a clear way JJ's condition.  What happens if they remove the bad kidney?  Will the good kidney keeping working? I think that she is not anywhere near a transplant - is she?

I would appreciate some good informative help so I can help my daughter feel a bit more at ease.

Thank you so much.

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  • So sorry to hear about your brain bleed, and your Granddaughters diagnosis. Has your granddaughter have the test yet?  I was diagnosed when I was young with reflux.  Reflux means upon urinating, the urine could flow back up the ureter tube to the kidney instead of the urine flowing out.  I'm not quite understanding the reason for the removal of her kidney other than saving her from further damage or infections.   It runs in my family which I had and was diagnosed when I was 10 in the early 70's, and they discovered that one of my kidneys was completely shrunken to nothing and the other was less than half function.  Back in the 70's there was no surgery's for reflux, but in this day and age there is lots of hope.  My cousin got pregnant and they found that her baby had reflux and they operated while the baby was in her womb and was able to fix the reflux with success before the baby was born 2yrs ago.    Really that is amazing.   I have high hopes that hearing that her other kidney is functioning at 73% that she can go a long, long ways with that much function.  Although the dr's gave me till my late teens that I may have total kidney failure I thrived with God's help having 2 sons and went another 10yrs after having them till my first transplant in 1994.   I hope your granddaughter  gets as much information as she can, and I'm glad that they sedate for that catherization test.  My 8yr old granddaughter has been showing kidney signs but hasn't had that test yet, so I know being a Grandma and those concerns and how your heart goes out to her.  I went to the dr. appointment with my granddaughter and daughter-in-law and how surprised I was that it was the same Pediatric nephrologist at the Children's Hospital that treated me back in 1972.  Flashbacks for me, and oh how I pray that my granddaughter will not have to walk in my shoes!  I am glad you have hope in God through all you have been through, and I will keep you both in my prayers. 

    • Suzzane,

      You are so precious - thank you! JJ just met with the kidney doctor this week. She does have reflux. They did sedate her during the catheter.  She is now set to see a nephrologist in a week to determine treatment.  Her regular kidney doctor explained that there are three treatments to choose from.  I think that they are to going to go for medication for a few months and then the surgery to correct the reflux.  As far as we know they have no plans at all to remove the kidney. What a relief for all of us especially JJ. She has had a horrible family life that is why she is with her grandmother and she deserves a break. I imagine she has had this for a long time.  We know of two bad kidney infections.

      JJ has a deep hope and faith in God - just as I do - He has been my light and my strength all these years. I thought the transplant was rough but our brains do funny things while they try to heal from strokes (my particular stroke was an inner brain bleed). With this type of stroke all you can do is wait to see if the bleeding stops.  Thank goodness it did.  But I am a clotter and just have to wait and see what happens. Doctors are debating placing a filter in my groin to catch any clots that might form.

      I'm due to be in transplant clinic this afternoon. It will be the first time since the stroke.

      You and your family will be in my prayers as well.

      Love you.

      which they cannot do anything

  • Hi Yvonne,

    Your kidney is doing very well and your granddaughters kidney is currently also doing very well. My kidney transplant is operating at about 55% with a stable creatinine level of 1.6 to 2.0 for the 3 years I've had it. It sounds as if they have a clear diagnosis of her problem and how to fix it. See if they are going to be able to fix the 23% functioning kidney as well - I was living without dialysis when my 2 kidneys together were working at that level and my creatinine level was at 5. I hope the operation is successful.  Good luck!

    • Hi Bill,

      Appreciate your reply - makes me feel better.  I had a brain bleed in December and I think that I am slipping as far as my kidney's are concerned.  I go in for labs in the morning.  They tell me it will take around 12 months to stabilize and determine what permanent damage the stroke has caused. I am now walking pretty good and my right hand is stronger.  But I can't write very well and am having word memory problems. But I am so grateful to God that I am not worse. I am not worried about me as I am heading for the good old age of 77 and 19 yrs post heart transplant. It's just been this last couple of years that I have began to have problems caused by my meds.  My heart is doing great - so strong.

      Tomorrow they are going to catheterize JJ's kidney to see if she is refluxing urine back into the kidney.  If so, they may decide to remove it.  But her urine tests say she does not have an infection so my gut feeling says they will not take the bad kidney out.  Your words are very comforting and have helped me find peace. 

      Thanks again.

  • hai yovnne.
    no she is nowhere near a needy for kidney transplant even if they remove the bad kidney the good kidney wil be functioning.My grandma her kidney was removed due to some inections and she lives a normal life even after 14 years after her operation she is good with her single kidney.
    will sure pray to god to give your grand daughter a good health dont worry yovnne everything wil be alright.
    • Thanks Joseph for the comforting words. I will pass them on to my ggrandaughter and my daughter. Believe me prayers are a constant in my life and JJs as well and I truly appreciate yours as well. We are both having a rough time but as the saying goes that too will pass.

      I appreciate your kindness.

  • Hey Yvonne!

    I do not know what correcting kidney reflux means. Mostly native kidneys are removed only when they are causing trouble - it could be that they are infected irreversibly or are causing some other harm to the body. Doctors don't unnecessarily take out even dormant organs from a body, I have heard it is risky - I am unaware of the risks.

    Even low functioning kidneys can produce a hormone called EPO which helps make RBCs.

    By the way, if it is an option for your family, switch to a doctor or a team that sits you down and explains things clearly to you.

    May I ask how you developed a kidney problem? Were your heart and kidney issues related?

    • Hi Deniz,

      Thank you for answering my question. The Doctors feel that JJ is taking the urine back up into the kidney - they call it refluxing- I think that she must not be emptying all the way. They are going to lightly sedate her and go up with a catheter and if that is what she is doing then they will attempt to take care of the problem. They think that this condition is causing a constant infection and hence causes pain as well. I think her doctor is okay, it's my daughter that is not understanding but she is going to consult with him and get a better understanding.

      I was on cyclosporine the first eight years of my transplant and it caused my kidneys to go bad. I am in Stage 3 Moderate with a creatine level of 1.39, but am beginning to slip. So, I suppose I will learn more about kidneys if my conditions worsens. In December I had an intercranial brain bleed caused from Warfarin and it has weakened other areas of my body.  To be honest it has been the pits.

      Thanks again.

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