polycystic kidney disease..

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taw01
New Member


Date Joined Oct 2009
Total Posts : 8
   Posted 10/25/2009 12:41 PM (GMT -7)   
my husband has polycystic kidney disease.....he is currently disabled and on dialysis 3 days a week....we are learning a new way of life on dialysis....it has been very hard before dialysis and getting used to it.....my two children inherited this as did my two grandchildren.....it's great to find a site for support  and understanding from others experiencing the same thing....

Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 10/26/2009 4:02 AM (GMT -7)   
Welcome.
Just like you my family also has PKD. It was first diagnosised when my father was in the hospital for gout. He had a very successful kidney transplant about 3 years later. I also have the disease and so do my two teenagers. I hope we can be of some help. It is a great site.
Elizabeth
Dx'd with Crohns 1984
Polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol, Endocort, Prednisone, Imuran, Folic acid, and Enalapril.
 


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 10/26/2009 5:59 AM (GMT -7)   
taw01  Welcome to our kidney forums. 
 
I also have PKD as did my mother.  I have three children and still havent had them checked.  I watch for signs and do blood work on them once a year.  I'm concerned with the preexisting condition clause.  My kids are 15, 17 and 20.   My mother had it and we never knew until her autopsy when she passed away with a heart condition.  She had no pain or kidney failure with hers but then she was young when she passed at 54.
 
Mine showed signs at 19 with kidney stones. After many years of stents and outragous pain we found out they needed to look inside of the kidneys upon my mothers death.  Thats when they found hundreds of cysts which were pretty large.
 
Living with PKD has changed my life. As I have said in the past we all have to create a new normal.  Our old lives are now a memory.
 
I'm so happy you found us.  I knew of NO ONE who had PKD until I came to this site for my pain.  Then they created the kidney forum and I know have a group of friends who understand what I go through instead of having to explain what it is.
 
A couple of my doctors in the past were lost when they heard PKD is wasn't something they knew anything about.
 
Please keep us updated on your family. We will always be here for all your needs.
 
Laurie
Kidney Diseases and Disorders
              Moderator
 
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD

Also CHF (Congestive Heart Failure) and Sleep Apnea

Hopefully NO MORE........


Elsie Mae
Regular Member


Date Joined Apr 2012
Total Posts : 32
   Posted 4/5/2012 9:56 PM (GMT -7)   
Polycystic Kidney Disease was a big surprise to me and my sister back in 2004.  We'd never heard of it and have found no member of our family that has/had it, but we were both diagnosed with it after CT Scan, Ultrasounds, and lab work.  We also have Polycystic Liver Disease.  Currently we are both at Stage 3 of five stages in this disease that can result in renal failure and the need for dialysis and/or a kidney transplant.
 
Since 2005 we have both been involved in the PKD Foundation.  We have attended PKD Walks, PKD Conventions, PKD Chapter meetings with guest speakers on topics related to PKD and PLD, and have helped with fundraisers for medical research to find a cure and/or treatments for PKD. 
 
For more information on PKD or the PKD Foundation, you may go to the web site- http://www.pkdcure.org/.
 
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