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July 2000
I am writing this story because I am on a mission to make the public aware of a liver disease called primary biliary cirrhosis and the great need for research and organ donor awareness.
My name is Ann; I am 40 years old, a wife and mother of two beautiful children. This story dates back to December 1994, when I had some pre-op blood work done. The doctor noted that my liver enzymes were abnormal and sent me to a Gastrointerologist. I had cat scans and sonograms taken of my abdomen to see if there were any abnormalities to the liver, spleen, or other internal organs. These test results came back normal, so the doctor thought the high liver enzymes might have been from some medication I was on. We decided to do nothing for now.
Every year when I get my blood work done, we would check to see if the liver enzymes count come down. At times they would, but as time went on the count kept rising. Finally, in November 1999 I spoke with my family doctor and told him that there must be something wrong and that we need to look into this further. I went to another Gastrointerologist and had more blood tests taken and finally a liver biopsy was ordered. The first Pathologist who read my biopsy said it was hepatitis (liver inflammation). Other symptoms I had were uncontrolled itching, slightly red palms, red spots on my chest, and feeling very tired. This kind of tired was unlike your usual tiredness. Every day I had to push myself to get up and get my work done, I was also bruising very easily all over my body.
I went to another doctor for a second opinion and he had me bring my liver biopsy slide from one hospital to another. The Pathologist who read my biopsy this time didn't agree with the first results so he sent my liver biopsy to the Mayo Clinic in Rochester Minnesota.
After about three weeks of waiting I got my results back and it was devastating to my family, and me. The results said I have primary biliary cirrhosis (PBC) stage 3 of 4. No this disease is not caused from drinking alcohol, which is the first thing people think of when the word cirrhosis is mentioned. I was also diagnosed with autoimmune hepatitis (AIH) grade 2 of 4 (both these diseases are autoimmune diseases).
The first thing I did was go on the internet and look up as much medical information as I could, to be aware of what these diseases are and what they could do to me.
My doctor sent me to Shands Hospital in Gainesville to see a specialist who deals in liver diseases. I brought all my lab work from last 6 years and the x-rays that were taken of my abdomen. After the doctor examined my liver biopsy and me, he said I have PBC stage 4 and that there was minimal AIH that could be seen in the biopsy. He started me on a medication called Actigall, which is suppose to slow down the progression of the PBC, and started me on calcium 1500mg daily, a medication called Questran to help try and stop the itching. I had an endoscopy done, which was normal, and a bone density test, which showed that I have osteopenia (weakening of the bones).
The doctor told me that sometime during my life I would need a liver transplant. There is no known reason why I caught this disease and the only cure is a liver transplant.
To me this disease is like a time bomb waiting to go off. I want to live to see my daughter graduate from college, get married and have children that I can spoil. I have a 19-year-old son who has severe Cerebral Palsy and I want to live to see him go to heaven where he will not suffer anymore.
There is a support group that I found on the Internet that has been very helpful to me. They have a website that has a great deal of useful information www.pbcers.org.
I belong to the Education Committee and the Organ Donor Awareness Committee for the PBCers Organization.
There will be a newsletter coming out quarterly. If you would like to subscribe, you can do so by donating a tax deductible check of $15.00 to:
If you wish to make a tax-deductible donation to help fund the research to find a cure for this disease, you can send a tax-deductible check payable to:
If you see yourself in this story and wish to communicate with me, you can email me at anj3330@peoplepc.com.
I want to thank Judy Miller for letting me share this story with her readers in hopes that I can get this message out to more people to make them aware of how important organ donation is.
By donating your organs you are giving the gift of life to someone who would otherwise die.
Don't bring your organs to heaven, God only knows we need them here on earth.
Sincerely,
Ann McCracken
