ARPKD| CHF Alliance
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Busy Career Mom With CHF

My name is Stephanie and I am a 30 year old woman residing in Indiana. I have suffered since a child with illness. It seemed every day of my teen life I had a stomach ache.  I also battled recurrent UTIs which were helped with prophylactic antibiotics.  In my early twenties, I was very sick to my stomach for about a month.  It was diagnosed as gall bladder disease and I had my gall bladder removed.  Some months later, I was sick for ten weeks (could hardly eat!) I had a stone caught in my common bile duct that was removed via ERCP.  Since then, I have endured 5 more ERCPs. 
 
During this same time (2001) I started with a new employer who ran a series of medical tests.  They found that my liver function tests were abnormal, but assumed it was related to all the gall bladder drama.  In 2003, I had a beautiful baby daughter named Olivia.  In 2004, I had my second ERCP and a liver biopsy and pancreatitis...I was then diagnosed with Primary Biliary Cirrhosis. In 2006, I had a biopsy to stage the progression of the PBC, but to my surprise my diagnosis was changed to Congenital Hepatic Fibrosis. In 2005, I began having recurrent kidney infections.  As well,I have bilateral cysts in my kidneys and nephrocalcinosis. In three years time, I had 13 kidney infections.  I had a ureteroscopy/lithotripsy procedure to blast away some of my embedded stones and have only had two kidney infections since then.  Unfortunately, beginning in August 2008 I began battling another infection-ascending cholangitis. I have had two confirmed blood infections in the last 4 months. I am now on a prophylactic antibiotic in hopes to keep these infections at bay. 
 
During my medical saga, it was discovered that my sweet niece "B" has PKD.  She has done well so far.  She was diagnosed at 8 months due to a kidney infection.  She is receiving treatment for high blood pressure.  I am hoping and praying for the best for her.  I am sharing my story in hopes of helping others, like her. 
 
Now for the great news...I am a happily married mother who has reached her third decade of life while enduring this disease.  I am college educated, have a full time job I love and am active in my church and community.  Although I face a liver transplant in the short term and possibly a kidney transplant in the long term-how lucky I am to live in a time when transplants are an option! 
 
I know that my case is considered mild and there are babies that are being diagnosed before they have even been born.  I hope that my story can actually be an inspiration to those mothers who wonder if their baby will be OK.  A person can have a happy productive life while dealing with CHF and kidney disease (mine still has not been labeled yet).  And for those researchers, doctors, and scientists who may read this-I hope this has been informative. 

   

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