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Date of last update: 10/09/2017.

Forum Name: Miscellaneous Nephrology Topics

Question: Polycystic Kidney Disease

 Rjdeal - Thu Aug 05, 2004 1:17 am

I was diagnosed with a polycystic Kidney in 2001 after experiencing severe pain that started in my left side and ended up in the left lower back area. A CT Scan with contrast was performed and it was determined that my left kidney was totally engulfed in cysts. The information I have found on this disease indicates that it is genetic and that it will affect both kidneys. I also had a problem about 14 years ago with similar symptoms in the same area, but no diagnosis was ever given. I thought I was passing a kidney stone and the ER staff treated me as such. As far as I know I have never had a kidney stone. I recently had another episode of severe pain in my left side and back and was hospitalized for a day. Another CT scan was performed that showed the same thing as the one in 2001. Nothing had changed. It appears as though nothing is wrong with my right kidney and it functions normally. I have been told by the urologists that the severe pain is caused by a bursted cyst in the left kidney on both occasions. The Urologist that saw me last told me that the kidney was probably deformed when I was born and that caused the cysts to start growing. He has told me that the right kidney will probably never have troubles with cysts. This does not seem consistent with my research on polycistic kidney disease. Is there more than the three types of polycistic kidney disease I've found literature on, Autosomal Dominant PKD, Autosomal Recessive PKD, and Acquired Cystic Kidne Disease? Nobody in my family has ever been diagnosed with PKD, nor suffered renal failure. I am a 37 year old white male, diagnosed at age 34.
 Dr. Yasser Mokhtar - Thu Aug 05, 2004 10:10 am

User avatar Dear rjdeal,

i am not a nephrologist, but i think that it is extremely rare to have polycystic kidney disease affecting only one kidney.

You have to follow up with a nephrologist not a urologist. If this is indeed polycystic kidney, you have to have ultrasounds on regular basis to see whether the other kidney is going to be affected or not, to follow up on your kidney functions, follow up on your blood pressure since patients with polycystic kidneys are bound to develop hypertension, you have to have a base line creatinine clearance and may be have a genetic testing. Since patients who have polycystic kidney have brain aneurysms, you have to be investigated for that as well in addition to making sure that there are not any other organs affected by the cysts like the liver or pancreas.

Nephrologists have a greater experience with polycystic kidney disease than urologists and i would recommend that you visit a nephrologist for a better explanation and thus understanding of polycystic kidney disease and for future follow up.

Thank you very much for using our website and i hope that this information helped.

Yasser Mokhtar, M.D
 Whussappi - Tue Dec 06, 2005 11:16 pm

I am 33yr old male. In 1999, I was diagnosed with PKD. I was having severe pain in my side since I was 18 but didn't have insurance and because I am a man, I could live with the pain.
1 week to the day, my dad discovered he also had the disease. Actually, he found out first. He has had high blood pressure that is literally through the roof all of his life. It is odd now looking back that the doctors never figured out what he had. Growing up, my dad went through a lot of pain and agony with so many tests and all it took for me was a simple urine test.
I am not sure why I am writing this. When I was first diagnosed, I was told in 2 years I would need a kidney transplant.After 2 years have past, they said it would be 5. I have found out that there is not much known other than everything that comes along with PKD. It is a pretty long list. Funny thing is, when I was ready to stop fighting, I met my future wife who has been my rock when I can't be.
I am not one to reach out and say I am hurting. My wife hates that. I have very different symptoms than my father does. I do have very high blood pressure. I have cysts on my Kidneys, Heart, and Liver. I am always exhausted, but I decided a long time ago, nothing was going to stop me from whatever I wanted to do. So, I stopped caring about what happened to me and am living life the way I want to. Sure I am in pain often but I have found out that attitdue is the cure to fighting this disease. I don't dwell on why. I just live.
I watch my dad and he has horrible pain. From Gout to Highblood pressure, which has a lot to do with attitude, I notice that if he is happy, there is no pain. If he or I are stressed the pain comes. This in turn drives my mom and my wife nuts because we know there isn't time to be picky about what people think.
My dad has nearly lost most of one of his kidney functions and that in turn does worry me. Not to the point that I am watching my own demise but knowing that my mom has to watch my dad go through this and knowing her son will too. I couldn't imagine what my mom is feeling after 34 yrs of marriage to my dad.
I know this has dragged on but I want everyone to know that you need to be checked for this disease. The earlier you catch it, the better it can be monitored. That is the key.

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