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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. |