PDK Patients

[Hdslimand62]

I am currently undergoing a few days of blood in the urine. Do other PDK patients go through a few days of blood in the urine on an occasional basis?

[KidneyCoach NKF Ambassador]

Are you talking about PD patients or PKD patients (polycystic kidney disease)?

[Hdslimand62 in reply to KidneyCoach]

Yes. PKD. Typo.

[cs65 NKF Ambassador]

Yes, as a PKD patient I did experience some incidents of blood in my urine, once for several days. On that occasion, my nephrologist ordered a urine test to check for hematuria (blood in the urine). It did stop bleeding. I explained to her that I sometimes had a bleeding cyst on a kidney that usually showed as some blood in the urine and sometimes lower back pain. I was lucky it always resolved itself. If you do experience severe or recurring lower back pain, please talk to your nephrologist. I talked to another PKD patient who had to have his cysts debrided for that reason. Again, talk to your nephrologist. Take care!

[Juliepkd]

Hi. Yes, I have PKD and this is a frequent occurance for me. It usually starts with a sharp pain, sometimes in my back or side, it lasts for an hour or so, and a day later I have the blood in my pee. It can last upto 3 weeks. I have multiple and massive cysts, so most times it's not a shock to me, but it can be very unsettling when you see blood in your pee.The consultant usually sends samples to the lab to check for infection. Most times it's negative but I have had to be treated with Ciprofloxacin when an infection has developed and it causes me pain. That's always a bummer because the antibiotics make me feel rotten and they suspend me from the transplant register until I am clear again. I can't offer any advice but you are not alone! Several patients at my dialysis unit have PKD and most of us experience this at some point.

Best wishes

Julie