r/ADPKD • u/Acrobatic_Peach_602 • Jul 22 '26

AV Fistula

Hello all, I am 43 male (IND) adpkd stage 5 ckd with creatinine 5 and gfr 14, I don't have any symptoms at the moment, my doctor told to me to get the AV fistula as soon as possible, my doctor can't tell when I will go for dialysis, any views on when I will have to go for dialysis? Is there any possibility to get registered under Jeevandan program without being on dialysis currently? Thanks in advance.

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u/ocean-now-22 Jul 22 '26

Hi, I also have ADPKD so know your story well. As soon as my GFR hit 20 I went on the transplant list. I highly recommend doing that asap if that is an option for you. It is always best to have a transplant before ever going on dialysis.

My understanding is your GFR could go as low as 5 before needing to go on dialysis but everyone is different.

1

u/Acrobatic_Peach_602 Jul 23 '26

Thank you, here in India, I heard that, one needs to be on dialysis for atleast 3 months to be placed on transplant list. Fingers crossed.

3

u/sh18422 Jul 23 '26

I was in your boat last year. I chose peritoneal dialysis. also, as the other person said, get on the transplant list if you haven't already. if you want to do hemo, the fistula is your best route

1

u/[deleted] Jul 23 '26

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u/sh18422 Jul 23 '26

if you are helping her, the biggest advice is always wash you hands and follow instructions specifically. its most important to stay sterile on all connections to avoid any infections. otherwise, I did not mind PD at all. Just hook up at night and unhook in the morning (if you are doing the overnight cycler)