Worried

[TJV123]

Hi, My mother passed away from PLD at the age of 63. She was 4'11" AND 110 pounds. The last year before passing away she looked 7 months pregnant. I am 60 years old and in a lot of pain, dizzy, tired all the time. I just had a cat scan due to blood and protein in my urine. My Doctor told me that their is nothing to worry about, just many 6 to 8cm cysts on both kidneys. I told her about my mother and two brothers who have PKD but she didn't seem to have any concerns. My pain is wrist now, and I am peeing Blood and what looks like used motor oil. Should I be concerned?

[Porphyrogennetos]

Sorry to hear you are in pain. Could it be you have a ruptured cyst?

Do you know your eGFR? Did your doctor tell you the stage you're currently in? I think dietary recommendations vary by stage.

Good luck,

P.

P.S.: Was your CT scan done with contrast?

[JanWellcome in reply to Porphyrogennetos]

I was gonna say the same it could also be an infection or stone, best to go to the doctors. You don't want to mess with any of those possibilities, as the will affect your GFR, you probably need some antibiotics.

Hope you feel better soon jx

[TJV123 in reply to JanWellcome]

Was in ER yesterday. One of the cysts burst, and I passed a 3mm stone. I think I will start a rock collection.

[crnsh]

Make sure you are seeing a nephrologist, not just the 'regular' doctor. My mom's care was poor because, even though she had PKD, she wasn't in the care of a nephrologist until her kidneys were at 12% functionality (which she didn't find out until she was in the hospital for another procedure). Blood and protein in urine is common in PKD. Blood can be from a cyst burst or an infection. Protein is leaked into urine when the kidney's function is reduced (higher protein, less functionality).

[TJV123 in reply to crnsh]

Because of the blood in my urine, the pain in my back, the dizziness for the last six years I have been sent to neurologist, cardiologists, and urologist. All these Doctors know about the cysts and my family's history. Everyone of them tell me there is nothing wrong with me. My last two doctors tell me not to worry about the cysts. Yes, I am looking for a new Doctor again. I will not die like my mother did at 63 from OLD because of Doctors who won't listen. Thanks for your reply.

[Porphyrogennetos]

Usually doctors do not know too much about our condition. I knew I had PKD, but as it did not cause any symptoms, I did not care too much.

In 2015 I fell on my side while exercising. I swell up like a balloon days later. I was in terrible pain for two months. All my labs were completely deranged. One lab, GGT, a liver function test, was 50 times ULN. So my GP sent me to the hepatologist. The twi months of waiting, I was in terrible pain. I was grey. I thought I was to meet my creator soon enough.

When I finally had my appointment two months later, the swelling had gone, my labs had mostly normalized, and I felt pretty weak as I had lost 40 lbs, but I felt okay. So I had a negative endoscopy, but an ultrasound which showed not only the polycystic kidneys, but also a slightly enlarged, highly fibrotic, very possibly already cirrhotic liver.

So the hepatologist dx'ed me with ethylic cirrhosis (I had already quit drinking completely) and told me that my condition had nothing to do with PKD. In his report he referred to it as 'uncomplicated' PKD. Now, in hindsight, PKD and uncomplicated sounds like an oxymoron to me.

Six months later, during my routine ultrasound (cirrhosis protocol) they found small hyperechoic nodules that needed further investigation in order to confirm/exclude neoplasia. So I was sent for a CT with contrast.

That took a couple of months, six or so. When I got to see the hepatologist again another three or four months later, I was given the result. No HCC, normal liver in size and contour, splenoportal system completely normal, but liver parenchyma covered by millimetric cysts consistant with PKD, not excluding the possibility of being biliary hamartomata (von Meyenburg complexes).

So the hepatalogist sent me to the nephrologist. He told me he did not know enough of PKD. Which I think is pretty honest and straightforward. It is a very good doctor. PKD is not a very common disease, doctors do not see it often, and I think we, as patients, often try to ignore our condition as long as it remains asymptomatic, too, as we have been told that there is not much you can do about it, anyway.

I later learned that on US von Meyenburg complexes can mimick cirrhosis.

So finally I am under the care of a nephrologist (who has discarded the cirrhosis d).. He says it is CKD G3A1. eGFR is 0.69. Creatinine clearance is 101. Serum creatinine is 1.18. Was 0.7 in 2015 when the accident happened.

Nephro said I am lucky. By my age, I should be on dialysis. Come back in nine months. You might be a candidate for Tolvaptan, but you are probably too old... (My older brother is G3b).

So, to get back to where I started from. Doctors do not know too much about PKD. Had I known a little more about possible complications, I probably would have connected the dots and saved myself from having to worry all that much about liver disease. Well, at least I have become a happy teatotaller.

So it is PKD, after all.

May God protect you all,

P.