My sister's GFR is 46

[okarol]

My sister called me (she's got polycystic kidney disease) and said her GFR was 46 on her labs - but they haven't done a 24 urine collection in a long time, which I thought was the best way to measure GFR. How often should that be done?
The doctor added another BP med to help control her hypertension. He also gave her a diuretic.
The doctor also told her that drinking more water will help improve her kidney function. Didn't I read that maybe that will stress the kidney too?
Any suggestions as to how she can maintain her GFR would be helpful. She's 55 years old.
Thanks.

[Rerun]

Gosh Karol I didn't ralize PKD ran in your family.  I think 46% is still pretty good for kidney function.  As far as I know if your kidney is working well then more water is better to keep things working and clean.  I'll keep her in my prayers.  Have you been tested?

                   

[okarol]

Gosh Karol I didn't realize PKD ran in your family.  I think 46% is still pretty good for kidney function.  As far as I know if your kidney is working well then more water is better to keep things working and clean.  I'll keep her in my prayers.  Have you been tested?

                   

Thanks Rerun. My dad died at 28 from a anuerism from PKD hypertension. My 2 sisters and my brother inherited it, but it appears that I did not. Oddly enough I got a child with bad bladder-induced renal failure.
I never got tested because a doctor friend said it would be very difficult to buy health insurance if it were in my medical records. He said the most important thing was to watch my blood pressure, which is always super low. Jenna's nephrologist said if I did have PKD there would be some BP symptoms by now, so he thinks that I do not. But anything is possible.
I am hoping to donate to whichever sibling needs it, if I can, if necessary.

[Sluff]

46 isn't too bad yet but who knows how fast PKD can deteriorate the kidneys. My GFR is around 59 which is still excellent and only a hair lower than 2 years ago. I'll find out tomorrow if it has gotten any worse since the last time it was checked.

[Jonndad]

From everything I have read the 24 hour urine creatinine clearance test is useless and most nephrologists think it should be done away with alltogether.  Dr. Walser states this in his book "Coping With KIdney Disease" and my own nephrologist confirmed this.  Any thoughts on this? tx, John

[boxman55]

Lets hope and pray she stays stable...Boxman

[Sunny]

I'm sorry about your sister. However, 46% is still pretty good and she should feel reasonably well.
High blood pressure meds to control blood pressure is a must and I'm glad they have that taken care of. Drinking 6 to 8 glasses of water per day is a must along with a low protein diet.
There are a few of us pre-dialysis types here on this forum and that seems to be something we all agree upon. I don't know a lot about PKD, but I am a pro at surviving on and maintaining low kidney function. (20% function now after 7 years). I rarely do 24 hr urine tests because creatinine levels from blood tests are a good enough indicator.Also, a transplant hospital will NOT do a pre-emptive transplant at 46% kidney function. One usually needs to reach the 20% function threshold or therabouts before a pre-emptive transplant can occur. I hold out lots of hope for your sister and she may manage many more years with her own kidneys. Good luck to her.

[monrein]

Sorry to hear about your sister Karol.  I hope she can keep her function where it is forever.   

[donnia]

Karol,

Sorry to hear about your sister.  I think the best way to preserve her kidney function would be to keep her blood pressure under control.  Also, one of the first things my nephrologist told me was to limit my beef intake because the protein in beef is harder on your kidney.
Keep us informed okay   

[Meinuk]

46% is a wake up call.  As long as she keeps her BP down and is vigilant in maintaining her health, she may be able to dodge dialysis.  Caffeine can progress PKD.  Now is the time for your sister to learn all about what is happening to her body, becasue now is the time that she can make a difference.  I had a 46%GFR  at 16, and I made it to 40 and 6 months.  (and that is with some serious caffeine abuse  - along with some wild times in my 20's.)

She'll be facing a lot of tests, probably visit the Dr. every six months or so (if PKD is her only health issue) and I am assuming that she has finished with having children, so now it is just live, enjoy and be careful (but don't let that haunt her life - I know how difficult that is, with the tragic loss of your father so young, but this is NOT a death sentence - more people are diagnosed with PKD on autopsy (death from unrelated event) than those of us who are in CKD5).  

If and when she reaches 25% then surgeons should be evaluating her for transplant. You can talk her through that and all of the testing - you are a transplant pro!

 

Anna

[kidney4traci]

Sorry Karol, pray she can keep the level there through diet and exercise.  You know I am a believer in chiropractic too, keep her nervous system healthy and any nerves clear that are going to your kidneys.

[okarol]

Actually 46% was good news for her. We have known for 30 years that she's had PKD, and are pleased that it is progressing much slower than my dad. He had hypertension when he tried to go in the army at 18 years old, and 10 years later his autopsy showed very enlarged kidneys.
I forgot about the caffeine, thanks for the reminder.

[dkerr]

My nephrologist doesn't feel a 24 hour is a good test for PKD function.  46 would be great in my book . . mine's at 12.

[Sluff]

Is this the sister I met in Milwaukee Karol? Just curious.


Those that say 24 hr urine is not a good measure then what is. I did the 24 hr in the beginning then had a biopsy then test periodically with urine and blood sample.

[okarol]

No this is the older the one Sluff. The one you met is 2 years younger but I think her numbers are similar.

[Wattle]

Karol going on my family history those numbers are great. Remembering she is 55.

My family run with PKD is similar to Meinuk's. I started dialysis at 37. I have never really been overly interested in alcohol and have never smoked. Caffeine on the other hand is hard to avoid for a chocoholic.   

My sister has also got PKD. Is 45 and still doing OK. I don't know what her GFR is because she likes to keep her head buried in the sand. She does she her Neph regularly but doesn't ask questions. Frustrating for me but she figures it will catch her eventually so why worry.

I will affect family members differently. Your sister is one of the lucky ones to have been healthy for so long. She may avoid dialysis and that would be wonderful.

[dkerr]

My sister also has PKD and has kept her head in the sand for a long time, but my going on dialysis is waking her up.

[Wallyz]

Two important issues for kidney function- Exercise and weight loss.

Prayers for your sister.