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Old 02-21-2012, 08:27 PM   #1
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adgirl75 HB User
PKD possible diagnosis

Ok kidney experts -- this just happenned to me today, so I'm scratching the surface here.

I have dozens of renal cysts measuring 1mm-20mm on both kidneys as well as several kidney stones in each kidney. found on ct scan.

This was accidentally discovered after an ultrasound was done to check out my gallbladder (which is ok)

the radiologist feels that "this may represent a mild form of type 2 polycystic kidney disease"

ok folks -- i've only been online a couple of hours and i'm not seeing anything that suggests there are mild forms of this disease. i assume I'm in shock at the moment b/c with no symptoms I've just been told a have an incurable kidney disease. oh, and that my 2 children are likely to have inherited it as well.

I'm a bit devastated. But, my questions are as follows:
what things would you ask at that first meeting with the urologist (I've been referred)
do you think it's important to screen children for this disease?
What's your PKD story?

I'm a 36 year old female and a little frightened here.

 
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Old 02-22-2012, 05:39 AM   #2
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Cora1003 HB UserCora1003 HB UserCora1003 HB UserCora1003 HB UserCora1003 HB UserCora1003 HB UserCora1003 HB UserCora1003 HB UserCora1003 HB UserCora1003 HB UserCora1003 HB User
Re: PKD possible diagnosis

While I don't have pkd, I know many people who do. Sometimes the disease is very aggressive, and sometimes it's quite slow and doesn't progress much. The only way to tell what you have is to follow it over the years. I think what happens often is that the folks who have a form of the disease that leads to dialysis and transplant will tend to post more online while those whose disease remains more dormant simply live their lives and don't have much of a presence.

Yes, there is a chance that your kids will inherit it, but it is not guaranteed. I would check occasionally, but not obsess about it.

Hope this helps a bit and hope someone else with pkd comes along for you.
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Dxd T1 1966, 2001 dialysis, 2002 kidney transplant, 2003 insulin pump, 2008 pancreas transplant

 
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Old 02-27-2012, 06:49 AM   #3
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Join Date: Jan 2010
Location: Sykesville, MD, USA
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bettyg HB User
Re: PKD possible diagnosis

Hi,
I was diagnosed at age 28, with PKD. I was the first in our family to be diagnosed. My mother had it, and had a 50% chance of passing it on to any child she had. Of the four children, three of us got it. When I was diagnosed, my doctor said "25-30 years down the road, you may need a dialysis and/or a kidney transplant." I am still not yet on dialysis. Right now, my kidney function is down to 11%.

Both of my brothers were on dialysis for about ten years each before they died. However, keep in mind that they did not like going to doctors, and only went and got diagnosed after they encountered problems. One of the most important things is that high blood pressure goes along with this disease, and you MUST take your medicine as prescribed. You cannot cure this, but you can definitely help yourself along the way. Taking proper care of yourself is very important! When you get an infection, you want to get it treated right away. Take your medicines properly and get your checkups.

I have been on the UNOS listing, waiting for a kidney, for just over two years. I was told that when you get around 25%, you want to talk with your doctor about getting on the list. It might take five years before you actually get a kidney. When you get down around/under 10%, you may need to start dialysis. The timing of that really depends on your health.

Another very important part of this is to get a doctor that you can communicate with. For many years, I had a nephrologist who would say "You're doing fine" every time I went in. One day, my daughter (age 45, who also has PKD) found a website that had a calculator that told what your kidney function is. You just need to enter numbers from your labwork. My doctor had never told me that kidney function had gone from the 80 percentile down to 25%! I now have a different nephrologist, and EVERY time I go in, I ask questions! and a nephrologist can also give you brochures to read.

Although this is not a fun thing to have, there are many problems out there that are much worse. Although it is scarey when you are first diagnosed, I would think you have many years before you need to worry much about it. You asked about testing your children. I had mine tested, and when they were young, it did not show up. I now know that one has it and the other does not. Unless they begin showing signs and having problems, I would wait to test them.

 
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Old 03-07-2012, 05:10 PM   #4
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Join Date: Mar 2012
Location: Enid, OK
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MelissaThomas HB User
Re: PKD possible diagnosis

I hope I can help (at least a little). i was diagnosed with Polycystic kidney disease a year ago. I also have several cysts on each kidney and my kidney are about 5 times normal size. I have never heard of a mild form of this disease. There is nothing you can do about the disease except keep your blood pressure and cholostrol under control. You will need to see a nephrologist (kidney specialist). Most people do not show signs of the disease until they reach their 30's. I'm 40 and it was just found a year ago. My doctor has cautioned me about having my children tested because it will be a preexising condition when they go to get their own insurance. You can easily live with PKD without a transplant well into your 60's if you keep an eye on it. I know it is hard to hear, I wanted a quick fix. Hope this helps.

Quote:
Originally Posted by adgirl75 View Post
Ok kidney experts -- this just happenned to me today, so I'm scratching the surface here.

I have dozens of renal cysts measuring 1mm-20mm on both kidneys as well as several kidney stones in each kidney. found on ct scan.

This was accidentally discovered after an ultrasound was done to check out my gallbladder (which is ok)

the radiologist feels that "this may represent a mild form of type 2 polycystic kidney disease"

ok folks -- i've only been online a couple of hours and i'm not seeing anything that suggests there are mild forms of this disease. i assume I'm in shock at the moment b/c with no symptoms I've just been told a have an incurable kidney disease. oh, and that my 2 children are likely to have inherited it as well.

I'm a bit devastated. But, my questions are as follows:
what things would you ask at that first meeting with the urologist (I've been referred)
do you think it's important to screen children for this disease?
What's your PKD story?

I'm a 36 year old female and a little frightened here.

 
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