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  • Polycystic Kidney Disease - should I be concerned?

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    Old 01-19-2005, 10:27 AM   #1
    Georgette
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    Polycystic Kidney Disease - should I be concerned?

    I'd like to get some opinions on my situation. I am a 31 year old female with a paternal history of polycystic kidney disease. My father was one of 12 and nine had PKD, which they inherited from their father (they are all dead now). So obviously I am very concerned about inheriting it. I had an ultrasound last year for various reasons including looking for PKD (I have had bad stomach problems for the last three years which I am trying to figure out as well). It showed my left kidney was fine but my right kidney had one “small” cyst 0.9 cm long. I just found out last week that I have a slight heart murmur, and for the past year I have had a lump on my side that I think is a hernia. I read on a kidney disease website earlier in the week that heart murmurs and hernias are common in people with PKD. I have never had blood in my urine. Blood pressure is normal. Occasionally I have pains in my abdomen, sides and back, but I don’t know if they are kidney related. So my question is – should I be concerned and should I push to see a specialist, if for nothing else but peace of mind? Every doctor that I have seen thinks I’m too young to worry, but I know that by the time my father was 35 he was on some sort of kidney medication and had blood in his urine (I don’t know all the details because he didn’t talk about it much – very proud man). I had another ultrasound today and will find results Friday so I would like to be prepared. Any opinions would be appreciated, please.

     
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    Old 01-19-2005, 12:22 PM   #2
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    Re: Polycystic Kidney Disease - should I be concerned?

    Georgette,

    To get a dx of polycystic kidney disease you have to have 3 or more cysts in your kidney. But with your family history and the one cyst you have it would be wise to have yearly scans and keep an eye on your blood pressure. Do you know if you have any cysts in your liver? A ct scan with contrast will show up any cysts that are too small to show up on the ultrasound.

    Strange that you say you have a lump in your side. I also have the same thing. Mine is under my left rib and is the size of a fist. Im still going under testing for it but Drs think it is either my kidney or liver that has large cysts, but they want to rule out gallbladder or intestional. They have me frustated at this point. Write back and let us know how your ultrasound turned out fri..

     
    Old 01-21-2005, 06:57 AM   #3
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    Re: Polycystic Kidney Disease - should I be concerned?

    Hello everyone,

    I got my ultrasound results back today, and here’s what they said:

    Female organs are okay, just a couple of small cysts on ovaries which he said it is normal for most women to have. He said my liver has quite a bit of fat on it, despite the fact that I am 5’5”, 117 pounds, very slim build. Not overrun with fat, but just looks more like the amount you would find on someone who is overweight. As for the kidneys, the right one is now normal, and there is a small cyst on my left one this time. No sign of polycystic kidney disease yet. But he also said it appears the tissue in my kidneys is a little weak and they are a little small. So he is going to do a 24 hour urine collection, and then he’ll send me to a specialist. By the way, my blood tests and urine tests showed no problems with kidney function or anything else.

    Does anyone know what “weak kidney tissue” could mean? Can it be a prelude to PKD or some other kidney condition? Thanks.

     
    Old 01-21-2005, 12:05 PM   #4
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    Re: Polycystic Kidney Disease - should I be concerned?

    I can't answer you about the weak kidney tissue, but as someone living with polycystic kidneys, it doesn't sound like you need to woory about that. I think from everything I have read, you would have many more cysts by age 31 if it was PKD. It's not a fun disease to have but I have been very fortunate so far to have no problems other then high blood pressure.Good luck to you and let us know what you find out at your next appointment.

     
    Old 01-22-2005, 05:54 AM   #5
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    Re: Polycystic Kidney Disease - should I be concerned?

    I agree with Maryann.i do believe that if you really had PKD you would be showing much more cystic development and the cysts would be much more glob like in nature,not just a couple of singular cysts.Marcia

     
    Old 01-23-2005, 10:45 AM   #6
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    Re: Polycystic Kidney Disease - should I be concerned?

    Thanks for the feedback. My mom told me that when she was a child she had "weak kidneys" but I'm not sure exactly what that means, since they didn't have diagnostic testing like they do now back in the 30's & 40's. She just said that when she had to pee, she had to pee.

    I'm glad my doctor is planning on sending me to a kidney doctor, though. I have heard that if you don't have any cysts by the time you are 30, there is only a 5% chance that you will develop PKD, but I'd still rather hear it from a specialist than just a GP. I guess I'm just really sensitive to it since I saw what my father had to go through. I'll post again in about two weeks when I see the doctor again.

     
    Old 02-12-2005, 02:36 PM   #7
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    Re: Polycystic Kidney Disease - should I be concerned?

    So I got the results back from my 24 hr urine collection, and the doc says it is completely normal, no sign of any problems. But just to be safe he is sending me to a kidney doctor for a second opinion, because he knows how concerned I am about the PKD. He said that frankly he doesn't believe the ultrasound. I know that usually you aren't supposed to drink anything before you have an abdominal/kidney ultrasound, but I had drank about a litre of water because I was having a pelvic u/s done at the same time. Could this have made my kidney tissue appear weak on the u/s?

     
    Old 02-13-2005, 05:20 AM   #8
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    Re: Polycystic Kidney Disease - should I be concerned?

    I am not sure just what is meant by "weak tissue" either.but just wanted to say that from what you have stated so far, i would be really really suprised if you actually had PKD at this point.By now, you definitely would have shown some sort of cyst 'globs.i believe from what my Neph told me, they used to say that sixteen was that cut off of showing signs but now it is closer to age thirty.So, if you are past that 30 mark with no signs of the globs of cysts, I seriously doubt that you inherited the gene,which is really good news with regard to your baby as YOU would actually have to have it in order to pass it on to your children.Please try and relax a little,okay?Marcia

     
    Old 02-15-2005, 07:53 AM   #9
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    Re: Polycystic Kidney Disease - should I be concerned?

    I know I sound paranoid, but the main reason I’m so anxious to know if I have it is because I have had stomach problems for the past 3 yrs, and every medication for it says don’t take if you have kidney problems. I’m worried that if I do take it and I am developing PKD, that it could do further damage to kidneys or make it progress faster. If that’s the case, I’d rather go without taking meds for my stomach.

    PKD has shown up in some of my cousins. I'm the third youngest of 35 cousins on my dad’s side and some of the older ones have already been on dialysis. Back in the 70’s a university student did a project on my family and took DNA samples from my grandparents and their 12 kids, and it showed who inherited the gene (9 of them). They offered to test me, but my dad didn’t want to because I was so young. I know it’s a dominant gene, but I don’t plan on having kids so I’m not concerned about passing it on.

    My appt with the nephro isn’t until July, so I guess I’ll have to wait until then to find out what weak tissue means.

     
    Old 02-16-2005, 04:01 AM   #10
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    Re: Polycystic Kidney Disease - should I be concerned?

    Hi!
    If I were you, yes, I would be concerned, but not worried! I agree with spongebobgamma, to get scanned every year, just to be safe. But, if your bloodwork shows that your kidney function is normal....I wouldn't worry. With your family history, just keep an eye out for symptoms....don't go looking for them, though, or you will worry yourself sick over nothing!
    As far as your stomach problems and the meds, I have the same problem. What I've started doing is if my stomach starts to get naucious (sp), I use herbal remedies now.
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    Old 04-24-2005, 08:56 AM   #11
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    Re: Polycystic Kidney Disease - should I be concerned?

    So I had my long-awaited appt with the kidney doctor this week (it got moved up from July). She is going to do more blood tests and another ultrasound and get them to pay extra close attention to my kidneys and count any cysts that they see, since one u/s said I had a cyst on the right kidney and the second u/s said I had one on the left kidney. She is also going to send me a form for some genetic testing that should determine once and for all if I have PKD. She also said she thinks I probably do have it, based on my family history, the fact that I do have at least one cyst (she said normal people my age donít have any), and because I have a heart murmur. Apparently 25% of people with PKD have heart murmurs compared with only 2% of the regular population. I have a follow-up in late June.

    So it looks like Iím not in the clear yet!!!

     
    Old 04-25-2005, 11:31 AM   #12
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    Re: Polycystic Kidney Disease - should I be concerned?

    It sounds like you found a good Dr who is very thorough. You might want to talk to him about doing a ct with contrast also, it will show cysts that are too small to show on ultrasound.

    When I was in my early 30's my Dr did a ultrasound to check for PKD because of my family history, he said I was clean. Last year I was having alot of pain and had another scan, I was dx with PKD and PLD, multiple cysts on kidneys and liver just full of them. I wonder if there was early signs in that first scan that the Drs ignored? By the way Im 45 now.

    My blood work is good so I will be monitored yearly with scans and bloodwork.

    Let us know how your next scan comes out.

     
    Old 04-26-2005, 06:52 AM   #13
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    Re: Polycystic Kidney Disease - should I be concerned?

    Wow sponge, now that is very very unusual.i am just quite shocked that you would have that much cystic growth when at age 30ish you had nothing.Had they also checked your liver at that first ultrasound?I know most places don't unless you specifically ask.The PKD in our family has extreme liver involvement.My youngest son actually developed a condition or they say that this actually started in the womb, congenital hepatic fibrosis.he ended up having to have a liver Tx at age 13.both my sister and i have PKD with liver involvement.But no where near the liver problems that my son had.I am really just so suprised to hear how much cystic development you had after age 30 as my neph stated that generally if you have no signs of cystic development at around 30 years of age, you can probably be assured that you did not inherit the gene.This just kind of freaks me out as my other son,upon US was only found to have one lone cyst in one kidney when this was done about five years ago,so we were basically told that his chances of having it were pretty slim.you have really given me alot to ponder here.Thanks for the heads up.marcia

     
    Old 04-26-2005, 10:37 AM   #14
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    Re: Polycystic Kidney Disease - should I be concerned?

    Feelbad,

    Im sure they checked my liver since the Dr knew of my family history, liver involvement is also worse in my family. I took my Drs word that I was clean but never saw the report myself. Im going to have a look at my past records and see if there was something there they weren't concerned about at that time. My sister was having gallbladder type pain 2 years ago, she had the ultrasound and was told nothing was found. After I was dx she looked at her records and found she also had multiple cysts in her liver, her Dr never told her. She is 46 now, who knows when hers started. It does seem my Dr would of said if they found something since PKD/PLD was what they were looking for but I still want to see that old report to make sure.

    It took my Drs a year to figure out the lump in my side is my kidney..finally did ct with a metal probe on the lump, they did a colonscopy first thinking it was a mass in my intestines..even though they knew I had PKD.. They think the pain under my right ribs is my gallbladder, failed hida scan.. So they want to remove the GB but aren't sure it will take away the pain since it might be the liver causing it..At this point Im not sure what to do...Its scary, I think they got confused since I actually have more than one problem going on.

     
    Old 04-27-2005, 05:19 PM   #15
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    Re: Polycystic Kidney Disease - should I be concerned?

    Hi guys, I just found out that my neph has booked me for a cat scan on May 20. This is in addition to the ultrasound on May 25 and the blood tests I have to do in the meantime. I am sure getting my money's worth out of the health system this year!

    I don't think anyone in my family has had liver involvement with their PKD. But my last u/s showed a fatty liver, and I had a pile of liver blood tests done a couple of weeks ago. I get those results on May 16. So I don't know if that has anything to do with the PKD.

    This neph that I just started seeing is very new, only got her neph certificate in September. She seems very proactive, and not like "why are you coming to see me when you aren't showing any symptoms yet".

    Thanks for the support, everyone. I'll write again when I get some results.

     
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