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    Old 04-29-2008, 09:48 PM   #1
    PlazaHouse05
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    Polycystic Kidney Disease? Or just renal cysts..

    Hi.
    I'm a 36 year old woman with chronic uti's and kidney stones. The kidney stones are so disruptive and painful that I finally sought treatment from a nephrologist instead of just a urologist.
    I had a CT scan w/ contrast dye and it showed that I have multiple cysts in both kidneys and a cyst in my ovary. The nephrologist phoned the radiologist and he said that I had the cysts/kidneys of a much older person.
    My last stone was over 2 months ago, however I do have other stones in each kidney 1-3mm stones.

    My visit on Monday showed blood in my urine. I have no history of PKD. Although my mother is going to her doctor tomorrow to have her kidneys checked. She is 62, normal weight, High Blood Pressure and constantly seeing her chiropractor for back pain, Mitral valve prolapse and diverticulosis.

    I have Mitral valve prolapse (who doesn't, right?), and diverticulosis. The one thing I do not have is High blood pressure. I'm about 10-15lbs overweight.

    I was shocked to hear that I could have PKD when I was really more concerned about my stones. I'm supposed to do two 24 hour urine collections and then I see the neph again the second week in June.

    The waiting is going to make me crazy! Is it really possible to have all the symptoms except for the MAIN one...that being High BP and still have PKD? even with no known family history?

    Any and all opinions are appreciated. - Otherwise I'm in fine health. Tired more than usual but I think everyone is...
    Passing the stones wipes me out and depresses me a little...it's aggravating and totally jacks up my schedule at work..so that's normal..

     
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    Old 05-02-2008, 08:42 AM   #2
    feelbad
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    Re: Polycystic Kidney Disease? Or just renal cysts..

    honestly,the main symptom of actual PKD is NOT high BP it is the way the cysts actually look upon an ultrasound or CT.they are very much 'globbed' in most cases vs scattered little cysts(tho you can have some that are singular,they will eventually "join')? you can have huge cysts that appear to be seperate but are actually smaller cysts that have 'joined" together. i found out at age 40 that i had had this all my life but becasue all my kidney and liver labs(i have liver involvement too)were always,and unbelievably still are within all normal ranges,just assumed i had two great kidneys. at this point my ultrasounds look horrid but i still maintain normal labs. those numbers wont actually change on you til the real damage just hits a particular level that really starts affecting the overall function of them. my kidneys now are about four times their normal size but the labs still good. unreal actually when you see how much huge cystic development has already taken place upon my US.

    i found out i had this when my then 12 year old son just presented in liver failure one day by vomiting up blood at achool. his liver disease was created by an offshoot type mutated gene that had to stem from actually having PKD. we just did not have a clue that PKD was even running in our family til this all hit the fan. my sister had to be tested once i was confirmed as the one who gave it to my son. and she alsohas it in both kidneys and liver too. luckily our liver involvement is not the same mutation as my son had. the cysts within the liver look the same as the kidney ones.

    did you also have any protien in your urine at any time too? the protien thing is usually the very first indicator of any real kidney disease going on. it just comes with the territory. but you DO have alot of the underlying kidney issues that can come along with PKD. the stones and the UTIs are pretty classic along with the multi cysts within your kidneys. alot of people will just naturally aquire one or two little cysts over the years but when you have more than that espescially at your early age,that is an indicator of having PKD. actual Dx usually,like i said,depends more upon how the kidney cysts actually look than anything else. the high BPs are kind of a later sign in most people tho it 'can' be there too. it all depends upon alot of different factors. my BPs have always been very hypo tensive and they still are within the lower ranges,except when my pain from other conditions flare but they usually come right back down once that initial hit is over. so my BPs are not an issue yet either.

    i would very highly recommend you seek out a good nephrologist at this point,believe me, any good neph can take one look at your CTs or USs and just knows whether or not the cysts are indicative of classic PKD or some other kidney cystic type of issue. i see you are seeing a neph already.have they done an actual ultrasound yet onyou? the US really are good at also checking and monitoring the progression of this. i have one done every year.

    believe me, in my and my sister and sons situation,my mom,who according to how this disease actually passes(autosomal dominant) my mom should actually have this since it came from her side,but she does not show the indicative signs of it,in any way shape or form. we have one of the best nephs in our city and he and the other nephs he has consulted on this have no clue as to why my mom was able to pas this onto us but she does not show the charchteristic cystic patterns in her kidneys. very insane actually.

    the thing is,in our case,we kind of lost contactw ith my moms side after my grandmother died years ago so ther had not been much real contact going on. well,after my son became gravely ill,we contacted them to see what their kidneys were doing and found out that almost every woman(my moms cousins and aunt) actually has this too,with a couple of transplants in some already done and others still in the basic stages where the labs have not changed yet. freaked me out let me tell ya. many many people actually have PKD but don;t know it. some are not actually Dxed until after they die of something else and it just shows upon autopsy. its just the way our organs compensate. we didn;t have a clue our son had liver failure and was going into it since before he was even born til he hit 12,then all hell broke loose. thats when WE all found out about it too.

    my best advice would be to continue the testing til they can truely ID whats actually going on. i am just suprised if your neph has actually seen the films himself that he doesn;t already know yet for cetain. if he has not yet seen them, he needs to.he just should be able to tell based upon how they look.thats all.

    how are your actual kidney labs,okay? was your liver clear? it is possible to actually get these cysts in just about any place within the abdomen. i have the liver ones and also two that actually popped into my psoas muscle. this muscle just happens to run behind and against the left kidney too. please keep me posted on how things are going. and let me know how your moms tests came out. good luck with this hon.Marcia
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    Old 05-02-2008, 04:46 PM   #3
    PlazaHouse05
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    Re: Polycystic Kidney Disease? Or just renal cysts..

    I'm so sorry to hear that you and your family had to discover PKD is such a horrific manner. I was afraid to ask about your son but read one of your other posts saying that he received a donor liver and is doing well. I was glad to read that!

    My CT scan was done for the urologist so my nephrologist has only seen the report and talked to the radiologist - hasn't actually "seen" the scans.
    She only told me that the radiologist said that I "have the kidneys of a much older person".
    I don't know about protein in the urine. This weekend and next weekend I am supposed to do the 24 hour urine collections. One each weekend then take it back to the lab and have a blood draw.
    I also have a cyst in my ovary (18mm) that only bothers me during my period.

    I got the report from my CT scan in 2002 and it notes multiple (8) renal calculi but only a small liver cyst. Nothing about kidney cysts - but it does say "mild pyelocaliectasis on the right kidney. I have no clue what that means.
    My current scan said nothing of any liver cysts.

    My Mom went to the doctor so they could revisit her scans and kidney function tests. Nothing out of the ordinary.
    My fathers health is poor and he's a veteran so we already had a copy of his kidney ultrasound from last year. One simple cyst.

    My great grandmother had a kidney removed but my grandparents have been gone for over ten years and no one that is left can recall why she had one removed. Crazy isn't it?

    I'm so interested to hear that your mother was a carrier but doesn't actually show signs of PKD. In the little bit of research I've done on the net (because I'm obsessing now!) I haven't read of that occurring.

    Thank you so much for responding. I guess now I just wait. Wait to see what my urine turns up and then wait for a follow up ct or ultrasound.
    I feel great when I'm not passing a stone, it's hard to imagine something else is going on in there.

     
    Old 05-06-2008, 03:22 PM   #4
    PlazaHouse05
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    Re: Polycystic Kidney Disease? Or just renal cysts..

    ...just an update. On Monday my aunt was sent to the hospital via ambulance. She lives in a small town and they rushed her to a more competent hospital. They said she was in renal failure, pneumonia and congestive heart failure.
    Today she's receiving dialysis for her kidney failure. Of course they've taken many tests and none of the results are back.

    This concerns me for many reasons, 1) she's only 60 and she's a great woman, I love her. 2) Could this mean that she has PKD? Her grandmother, my great grandmother had a "dead" kidney removed but it was never determined why.

    Because my nephrologist suspects that I might have pkd, I emphatically told her only one week ago that we didn't have PKD in our family. That I would have my parents revisit their scans with their gps (which they did) and that seemed to clear up any doubt but now..eh, what strange timing.
    I'm so curious to find out what they discover with her kidneys.

    She has no history of kidney problems but was uninsured (working for a doctor no less!) and probably put a lot of stuff off - which understandably many people do.

    I'm on the second jug o'pee for my nephrologist..the one with hydrochloric acid and then I see her in June.

    Are "carriers" that common?

    Just reading feelbad's story scares the crap out of me..like a silent ticking time bomb in many cases.

     
    Old 05-07-2008, 08:30 AM   #5
    feelbad
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    Re: Polycystic Kidney Disease? Or just renal cysts..

    thanks for the update tho i am sorry to hear about your aunt. i seriously think there is still ALOT that they just do not actually know about PKD yet. my mom not having the indicative cysts(but her cousins are slammed with this diease) is just sooo insane with autosomal dominant PKD. it has totally stumped my neph. but she has had other issues. she has a hemangioma in her liver,and was dxed about two years ago with medullary sponge kidney? i had a hemangioma too but mine just happenedto show up inside my spinal cord and had to be removed. life sucked after that surgery.
    the one thing i seem to be finding is the way any individual family units own PKD actually shows itself is very highly individual for some reason. within just my little family. my mom does not have it,my son had that mutated gene causing the liver failure(at age 12) along with him too having the indicative polycysts in both kidneys but minimal since he is only 21 right now,my sister and i BOTH have the kidney and the liver cysts. BUT my moms cousins all have the very straight forward "kidney only" type of this. insane? yes. like i said,this really is a strange condition.

    the thing is,until ultrasound came around,there really was no actual test for this in our earlier family. it wasn't til they performed autopsies,which were not always done either,that people were being Dxed with this disease. so trying to trace this back in alot of cases is just hard. my own grandmother had alot of kidney issue but nothing was found til her death. both my grandma and her oldest daughter(my moms sister) actually both only had one functioning kidney for most of their lives but no real appearance of PKD cysts in the working one. my grandma also had a still birth baby wayyy back before my mom was even born. we don;t even have a clue as to what occured with that at all. they didn;t 'do' what they do now with still borns ya know?

    there is also another thing here that you really need to be aware of if this IS PKD? for some reason,people who are born with PKD also are born with much weaker vessels. don;t know why,they just are. i had a brain aneurysm that developed two years ago which is also common in PKD patients too. luckily it was coilable. my cousin,who was tested for the PKD cysts at one point(no cysts),also ended up having a brain aneurysm too. this was my moms brothers child. tho he does not have the cysts either. like i said,this IS a really insane condition. it would appear even if you do not actually have the cysts,that some of those same symptoms or inherent issues still can be passed on,at least that is how it has appeared on my moms side. see,this is the area where i really think they just don;t know the whole story about PKD. it does appear to sort of individualize itself in a particular way in every family. i am thinking that if there is actually any history of any kidney disorders in your family,that it could be just playing out kind of like my families has,you know what i mean? just really wierd stuff there.

    has YOUR neph actually seen your scans yet? he should be able to actually just know by looking at the way the cystic patterns are, they are pretty great at just seeing this in peoples scans since this is something they do see alot. PKD is just a VERY common type of kidney disease in many many people who just do not yet know they have it since the labs stay within the norms for quite a long time til that level of damage reaches that certain level. like i mentioned before,despite the unbelievable mess and the size of both of my kidneys,as of feb,they are still within the norms range in all labs. unbelivable really.

    i do hope things are going okay with your aunt. please let me know just what you find out about you,K? hang in there,Marcia
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    Old 05-12-2008, 02:46 PM   #6
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    Re: Polycystic Kidney Disease? Or just renal cysts..

    Feelbad,
    Thank you for sharing so much information with me. My aunt is still in the hospital. She is continuing to have dialysis every day. She mentioned to her neph that we might have PKD in the family but....??? They still have not diagnosed her or told her why her kidneys aren't working. They did a 'doppler' (my mom's words) on her last week and said that one kidney was enlarged (no cysts) but I don't know how hard they're looking into the possibility of PKD. They can't even control her blood pressure and it's been a week since she went into the hospital.

    I obtained the actually cd of my scans from 2002 and a month ago and dropped them off at the neph. I just completed my last 24 hour urine collection and now I just have to wait.

    I think my Aunt hasn't been diagnosed because she doesn't have cysts. Like you said it manifests itself differently in every family and each individual. For them to truly know whether she has it or not, wouldn't they have to do genetic testing? Or do you think at some point if everything else was ruled out, they just might say "must be PKD"?
    How long can a person be in the hospital for renal failure before they figure out what's causing it? Craziness.

    Thanks again for all your information.

     
    Old 05-13-2008, 08:24 AM   #7
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    Re: Polycystic Kidney Disease? Or just renal cysts..

    hey, no problem. if i can help anyone deal with this stuff,believe me, i am more than willing to try and help. it is just a really insane type of kidney disease. like i said before,i really do think there are still alot of things they just haven't been able to really figure out about certain aspects of this yet.

    if i recall,there IS some level of genetic ID markers now to see if this chromosome has been affected or there or something? if i remember right it has something to do with chromosome 16? but don;t quote me on that tho,lol.

    if you do some more in depth research on autosomal dominant PKD,i am sure you will run across that genetic stuff. thats where i remebered reading about it when we first found out about this disease being in our family. but that was back in 99-2000 so it was a while ago. but i DO know there is something they have found out there. there may be some level of genetic type testing availiable now that would indicate a yes or a no to a certain degree. it should be interesting to hear what your neph actually thinks once he actually views the hard films. i do hope your aunt gets better soon. are they talking transplant at this point or don;t they yet know her status there? it would kind of depend upon just what her labs show and what is or is not actually stull functioning or able to restart itself once they can hopefully get past the crisis here.

    please continue to keep me posted as to what you find out. hang in there hon,marcia

     
    Old 08-17-2008, 10:07 PM   #8
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    Re: Polycystic Kidney Disease? Or just renal cysts..

    Hi there: i have PKD and what you are going thru sounds normal. my siblings all have it too. as for the BP all of us had normal till we got near 40. then we started having trouble and needed to start on the BP and water pills. Note, many of the BP meds we who have PKD can take will cause depression, do not be startled, you just have to take a "happy pill" usually low dosage. Sorry to sound so calas, but have been living with this PKD for years and have watched my Mom and Sister go thru the good and bad of this desease and died of the complications associated with it. See, PKD will not kill you, but it is all the other body parts that seem to fail. But, to be honest if you relax, do as your doctor says, watch your diet, and take your meds. Life should not have many limitations for you. Worry, is the worst thing you can do, it causes high BP. Look life in the eyes and keep smiling.

     
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