Polycystic Kidney Disease (PKD) Support Group
Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.
Hello everyone. At the Docs office for broken rib and they told me I had PKD & PLD. I asked what that was because I've never heard of it. Prior to that I was at the hospital for what I thought was appendicitis, which embarrassingly turned out to be constipation:/. At checkout the nurse told me they found 2 tiny cysts on my liver. He asked me if I drank a lot and I said yes because... I do. Or at least I used to nowadays. He told me they'd most likely go away after awhile so I thought nothing of it. Plus they never mentioned my kidneys.
Now I'm told I have PKD and this time the doc said I have multiple cysts on my kidneys and liver. At this point only 2 months had passed. I asked her how many and she said they only diagnose PKD if there are more than 2 or 3 cysts. She was very smug btw. So now I'm freaking out about whether or not I have it based on a smug doc, my cysts or drinking. Nobody in my family has ever had it. I'm 35 right now and I'm in no pain, no dark urine, no fatigue, no headaches, basically no symptoms except the cysts which I was told were not big. My liver doesn't hurt either. I eat relatively well. What doctor should I go see first? Should I get my scans from my last visit? I guess I'm in that beginning stage of "holy crap im gonna die" phase and came here for peace of mind. Wanted answers and to share my story I guess. Anything is helpful. Thanks for reading.
Welcome to the group. The fist thing to say is, don’t panic.
More than 2-3 cysts on your kidneys is the diagnosis criterion, so it sounds like you do have PKD. You may find this fact sheet helpful:
https://www.niddk.nih.gov/-/media/FD324862F39546E88D22860766E3A9EA.ashx
The key things to remember are:
This is not a death sentence. Many people experience only mild symptoms, much later in life. If you make healthy choices and look after your kidneys now, you will extend the life of them. Liver cysts very rarely cause any problems, especially in men.
You are probably one of the 10% of cases caused by a mutation since you have no family history. This applies to me, too. It is a shock to discover you have this disease in the way that you did. I also discovered in the same way, when I had a hip scan.
You should now see a kidney specialist (renal consultant). It’s highly unlikely you will need to see anyone about your liver. The renal consultant will explain more about the disease, check your kidney function with blood tests and will be able to monitor you in the years to come.
Drink plenty of water, keep sodium intake low, monitor blood pressure, avoid caffeine, exercise and eat healthily. Most importantly, enjoy your life and don’t let this dominate your thoughts. Good luck.