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Old 01-09-2009, 02:52 AM   #1
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Multiple kidney cysts

Hi there I wonder if anyone could help.

I went for an ultrasound on Monday (as part of investigations for high blood pressure) and the ultrasound lady told me that I have several kidney cysts.

I'm 36 (37 next month) and have never had any kidney prolems in the past, and neither have any of my family that we know of.

I have since telephoned my consultant's secretary who confirmed that yes there are cysts present on my kidneys but couldn't tell me any more information, she refused to say over the telephone whether they were simple cysts or something else.

As part of the investigation into the hypertension I've also had an ecg, a chest x-ray, several bloods and 2 x 24 hour urine collections.... the results of which I don't know yet.

I'm not due to see the consultant again until end Feb/beginning March (they will send me an appointment once all my results are back next week) so until then I'm left in limbo wondering what the next step is, what exactly is wrong with me and what I need to do next.

Does anyone know that seeing as there are 'several' of these cysts, given may age but lack of family history, could it be PKD? Would I have other symptoms? And if they are only 'simple cysts' ... whats the general treatment of them ... just keep an eye on them? If simple cysts multiply or grow, can they also reduce kidney function (oh, btw, I had my kidney and liver functions checked in Nov 08 and they were ok).

Thanks

Jo x

Last edited by bobbedazzler; 01-09-2009 at 02:56 AM.

 
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Old 01-09-2009, 08:21 AM   #2
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Re: Multiple kidney cysts

the one thing aboput PKD,which i DO have in my kidneys AND my liver as well(do you know if they also checked your liver as well for cysts?),is that it remains like a "silent' disease process since your kidneys can absorb them very readily. it is not til they either get too large,or BPs become affected or they are simply found upon an abdominal US that people can actually 'just find out' they have this disease. mostly becasue your lab numbers wont actually change til the damage hits a certain level(i am not suprised at all that your labs were all good),mine are still within all normal ranges despite the kidneys being almost four times their normal size and loaded with cysts. the key here is having any traces of actual protien in your urine. that is usually the very first indicator of an underlying type of kidney disease just going on within your kidneys.

i found out i had PKD when our youngest son became deathly ill from a mutated gene offshoot that was created from just having PKD. he was only 12 and in liver failure and we did not have a freaking clue he was even sick til things kinda hit that fan one day. i and my hubby had to have ultrasoiunds done just to really find out where this came from. i was forty years old and found out i had had this all my life. didn't have a freaking clue,neither did my sister who i had to tell after I found out,and she had it too and didn;t have a clue either.

just what did the tech say to you? was there ANY mention of globs of cysts or were they all seperated out from each other? the one indicative thing about PKD is by a certain age(your age,it would show at least 'some" of those globs by now)they will start to kind of glob together and not stay seperated? that is usually how they really define PKD from just simple cysts in the kidneys. the cysts really dont actually "take over" healthy kidney tissue as you would think,what actually occurs with PKD,and why the kidneys can become so enlarged is that the cysts push out/displace healthy kidney tissue and replace it with a cyst,so the good tissue is still actually kind of there? its just pushed out of the way to make room for the cysts(this is also why it takes so long to actually see any real lab changes too). they can also form on the outside and the inside of the kidneys too. i can actually feel masses or globs of cysts in one particular area of my kidney.

i would obtain a copy of your actual ultrasound report if i were you and from here on out make certain to keep all copies of any and all testing done on you,like the labs and the 24 hour collection? just keep it all in one folder so you have all your own info. believe me,it does help. ya know,quite honestly,i would not wait til that appt to find out the actual results. i would call your doc and simply ask him to call you back with the results,just so you know and can stop worrying about all this. thats just an awfully long time to have to wait for results ya know? i have discussed many a testing or MRI result with my doc over the phone. you could also call that docs office and request copies of all test results,it usually takes about one week to obtain them thru the mail once you sign that release of information. you can also contact the place where you had the US done and get a copy of that US report for your own records too. you simply DO have a right to all medical info generated on you.

there are simply a few different ways of obtaining your own info and not have to wait to actually 'see" your doc. like i said,thats just a very long time to have to wait for results when the doc actually gets them in about a week? or like i said above, just call and ask for that call back. the man IS working for YOU not the other way around,ya know?

the thing here is,if this actually is PKD,you really cannot actually "do" a whole lot to stop the actual progression. i know they do now have some types of medications that are supposed to actually help with this,but i really have never heard of anyone who has used this stuff and had any real stopping of the progression itself. that would be something to discuss with your doc or the nephrologist who hopefully you will be seeing just to help monitor this for you. BUT we could be also getting way ahead of ourselves here to ya know? if these are actually seperated and simple cysts and not PKD,well,that is a whole different story. but it would appear that you are suffering from the high BPs that can come along for the ride with any actual kidney disease since the kidneys just play a huge part in regulating our BPs. luckily,i have not had that problem yet but my sister has.

i hope that helped you some. please let me know what you find out about your kidneys,K? i do wish you luck with this and hope these are just simple cysts of some kind. marcia
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Old 01-12-2009, 06:39 AM   #3
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Re: Multiple kidney cysts

Hi Marcia

Thanks for your reply. I went to see my own GP on Friday and he is going to request all my test results (because I was referred for the tests by the specialist, a copy doesn't automatically go to the GP) and then ring me this week to discuss it over the telephone.

The ultrasound lady really didn't give me much information other than I have multiple cysts on both kidneys .......and because I didnt have a clue about the possible implications of this, I really didn't ask any questions, I was too shocked that she even said anything.

I'm in the UK and am being seen on the NHS so its really difficult to get hold of copies of reports etc - my best bet is through the GP, hopefully he will do as he said and ring me this week so at least I know what I'm dealing with.

That's awful about your Son, how is he now?

Thanks again for your help, I really appreciate it, I'll report back when I know what kind of cysts I have.

Jo x

 
Old 01-13-2009, 08:40 AM   #4
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Re: Multiple kidney cysts

believe me,i can totally relate to that "shock" of finding all that. amazingly,since my sons liver tx back in 2000,things with that have been wonderful. i was kind of expecting repeated visits into the hospital along with all the other crappy things we had to deal with pre Tx,but it(knock on wood here) really has been the best possible match he could have gotten with the donated liver he recieved. even his Tx surgaon said he could not have hand picked a better match with all that has to be matched before an organ can be implanted. so we ARE very thankful for that believe me.

he does have some cysts in both kidneys but no where near as bad as mine are. i am thinking since those cysts they found in you were inboth kidneys and not just one,this could actually be PKD. its too bad you can't get those solid answers much sooner. is this a nephrologist you are waiting to see for results or just your regular family doc? i really would think if this is your family doc that you could get in much sooner,ya know? there is always trying to get on the cancallation list too. when someone cancels an appt with your particular doc,just ask them to call you so you can get in quicker than you are scheduled now. thats just an awfully long time tohave to wait and wonder. i do feel for ya there. i would keep calling and bugging that doc to at least call you over the phone to discuss this. my doc does this all the time when i have tests done. just a thought.

please let me know whenyou find out anything. good luck jo. Marcia

 
Old 01-16-2009, 01:09 AM   #5
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Re: Multiple kidney cysts

Hi Marcia

Well, my family doctor managed to get hold of the results for me and rang me last night - it is PKD. I'm a bit stunned actually, I had convinced myself that it wasn't! Apparently each kidney has multiple small cystic areas, the cysts are less than 2cm - which I'm guessing is a good thing.

He said that my Consultant at the hospital would be able to advise me better as to what happens next but he did say its important to get the blood pressure under control as it can damage the kidneys. Oh and he said about the possiblity of cysts on the liver too - so I suppose that will need to be checked out.

I'm back at the hospital on 13th February to see the Consultant.

So, any advice? Is there anything I can do lifestyle-wise to help myself? Any supplements I could take? Any idea what I should expect to happen from here? Oh and do you think its worth my parents and my brother getting checked for it?

Sorry for all the questions, I'm still a bit gobsmacked just now.

Thanks for your help.

Jo x

 
Old 01-17-2009, 09:02 AM   #6
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Re: Multiple kidney cysts

sorry you got the positive on this jo. and YES,you DO need to tell your family since you supposedly got this from one of your parents(do you have any children?). according to all the literature i have read on this,since this is an autosomal dominant type of passed condition,one of your parents did give this to you. the thing here is,despite my sister and i having this and me passing this onto my youngest son,and knowing this DID come from my moms side,she does NOT actually have this in her kidneys,but she does have alot of the problems that can come along for the ride with it. my nephrologist is just totally stumped as to how we got this but my moms US just showed one single cyst in each kidney. it most defintiely would have shown up by now given her age if she did actively have it.

it is almost like she was some sort of "carrier' for it(but this totally goes against all info i have read on this),and did pass it on,but she does not have the cysts at all that normally are just there with this. very crazy let me tell ya. but her cousins,the females who have been tested,the guys are too afraid to go there,they all have this too(very heavily),but strictly only kidney involvement with no one having any liver crap. we did not have the slightest clue they were even dealing with this since my grandmother passed away long ago and we just didn;t keep contact withthem at all really.

from what i have gathered over he years and seeing what has taken place with MY cousins,one had a brain aneurysm which this does place you at higher risk for,and the other cousin has had like lifelong problems with very chronic UTIs occuring over and over again(all are PKD tendencies),but there father,my moms brother,does not show the cysts either,and neither do they. it really does appear to me anyways that in every individual family unit,this does tend to play out in a very highly individual way. my son also ended up with a mutated form of this which caused whats called congenital hepatic fibrosis. this is an offshoot disease that came from just having the PKD. it just 'happened". he did go into liver failure and required a transplant but is doing okay now. that was just a totally insane time. just so you don't worry about that happening here,you are actually born with this going on and it presents around age ten. definitely no way you have this,K? just wanted you to know that.

do you know of ANY family member who has had ANY problems at all with their kidneys or high BPs? the thing with PKD is depending upon just how rapid this disease goes,people can go all their lives and not have a real clue that they even have it, it gets found out upon autopsy or some other way when they are way old? it normally will present in the fourth or fifth decade of life. i did not have a clue i had anything wrong with my kidneys since my labs were always within the norms and still are as far as i know. i really have no idea just when i would have actually found this out if my son hadn't gotten deathly ill and it was found in him first. i was about 40 years old then.

i do know they now appear to have some types of meds to slow the progression of this but have never heard of anyone who has used them to any real success. this would be something to discuss with your nephrologist. your PKD could progress very slowly or more quickly,it really is hard to say just what it will do,it kind of runs on its own little tangent,ya know? the one thing i have found with myself and my sister,having these in the kidneys and the liver too,is that this may be a very real reason as to why our labs have managed to stay within norms all this time. my sisters labs "just" had their first out of range numbers right before thanksgiving this year. comparing that with my moms cousins who have this just strictly in the kidneys,they have had labs go out of range very early on in their progression of this. so this is just my own theory.

did your doc tell you about the risk factors here when you simply have this? one of them,and i do not know exactly why this is,is we are just born with naturally weaker vessel walls so we are more at risk for developing vascular malformations like aneurysm? i was also born with whats called a cavernous hemangioma right smack in the middle of my spinal cord too. this was removed back in 2003 and created a ton of major problems for me from spinal cord damage and the crap that comes along for the ride. it does suck.

getting that BP under control really IS highly crucial for you for alot of reasons, but having naturally weaker vessel walls just ups that real need to keep it down. unbelievably,one good thing actually came out of my spinal cord damge,orthostatic hyPO tension,so my BPs have stayed on the lower side. at least that is something. but that did not keep me from getting that stupid aneurysm. go figure.

hopefully you can find a really knowledgable nephrologist to help guide you and inform you fully about everything pertaining to your particular health and how things should be for you here. some people will end up needing a transplant somewhere down the road and some will not, i am hoping that i am not going to have to go that route(or you),but who knows ya know? i do think i have been thru enough at this point already.

if you have anymore questions about this or find out anything else,please keep me posted,K? good luck jo. Marcia
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9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

Last edited by feelbad; 01-20-2009 at 09:11 AM.

 
Old 01-20-2009, 09:13 AM   #7
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Re: Multiple kidney cysts

just wondering how things are going for you jo. just a bit concerned since i think i may have overwhelmed you with too much info? just checking on you. hope things are okay,Marcia

 
Old 01-21-2009, 03:41 AM   #8
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Re: Multiple kidney cysts

Hi Marcia

Thanks for your reply, sorry for not replying sooner, I've been in a bit of a daze! lol

No don't worry, you didnt overwhelm me, I'd rather know all the ins and outs - I'm one of those people who 'need' to have information.

I don't have children myself, and my brother went for an ultrasound and he's clear, so its a relief to know that his children won't have it.

My parents are both 60 this year, and they're both (as far as we know) healthy. My Mum has been in and out of hospital with pancreatitis and gall bladder problems and has had numerous scans (around that area) and her BP is always low. My Dad has a general check up every 12 months and has never had high BP or any other symptoms .......... so I'm crossing my fingers that its just me..... although I understand that some people go through the whole of their lives with no symptoms and its not even known they ever had it until autopsy.

They're away on holiday at the moment so I have to break the news to them on Friday when they get back.

We don't know of anyone in the family who has had kidney problems, however, we don't know my Dad's Father's side of the family as his parents divorced when he was born and there has been no contact since ... but certainly his Mum's side of the family and My Mum's side have never had any problems!! So it could have come from my Dad's Dad ......... or I'm just a spontaneous mutation!

I suppose I'll know more it all when I see the Consultant at the hospital on 13th Feb .... until then a lot of it is speculation.

How are you doing?

Jo x

 
Old 01-22-2009, 08:12 AM   #9
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Re: Multiple kidney cysts

believe me jo,i do know how overwhelming this can all be, try taking it all in while your child is in liver failure, man that sucked. i could not even THINK of my crap while that was all going on,it just took some time for it all to kind of sink in.

that is not unusual for someone to actually somehow end up with some spontaneous type of PKD, but there probably IS someone in your family line somewhere who did have this and it was like with my mom and her brother type thing where they had to have 'something' that was passed on to me and my sister then me to my son,but they simply did not and still do not actually show any of those particular cysts. its really a bizzarre type of kidney disease. i am like you in needing to know EVERYTHING about any condition i may have. info IS knowledge and power to make the best possible health care decisions for ourselves. my sister is the total opposite of me in that regard. the less she knows the better type thing? that is how she copes with most bad things,pretends they are not there?

if you have anymore questions don't hesitate,K? let me knopw how your appt goes jo. good luck with this,Marcia

 
Old 02-11-2009, 08:56 AM   #10
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Re: Multiple kidney cysts

Hiya

Well, I haven't posted for a while but I have my appointment on Friday at the hospital ..... are there any questions I should be asking, anything really obvious that I might not have on my list?

And will I be told to follow a low protein diet?

Cheers

Jo x

 
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