Betty J. Vaughn

fred_betty@bellsouth.net

I live in South Carolina.

I am a self-employed Book-Keeper.

My favorite movies "Sabrina".

My favorite music Country.

My favorite pastime is reading.

I have a Pomeranian.

7/22/2006 In March, 2003, I finally went to the doctor to have my gallbladder tested because I thought my indigestion and gas problems were caused by that. After some blood tests and an ultra sound, the doctor found I had an enlarged spleen, gallbladder thickened and liver slightly enlarged. She sent me to a cancer specialist who ran a CT scan and a hepascan which showed the gallbladder was working ok and the CT showed enlarged spleen and a dark spot in the abdomen. He waited 30 days and ran another CT which showed a mass on my ovary and rough edges on the liver.

He sent me to a GYN cancer doctor. He ran an ultra sound of the pelvic area which showed a solid mass and set me up for an operation to have the lump removed.

In the meantime, he sent me to a gasterentologist who had a bunch of blood tests run which showed an enzyme deficiency. He had a upper endoscopy ran which showed varices in the esophagus and a liver biopsy which showed possible cirrhosis. He is the one who diagnosed me with alpha 1, told me to go to the internet to find out what it was and transferred me to Dr. Wilner at MUSC.

The mass wasn't cancerous but they had to give me platelets before the operation. The incision took some time to heal and they didn't do a very good job of sewing me up because they said since I was going to have to have a transplant, they would just cut me open again.

They ran pulmonary tests at MUSC, ultrasounds, and blood tests. Dr. Strange sat down and explained the disease, what it was, what it affected, that there was no cure and where I was in the progression of my condition. It has not effected my lungs any more than smoking a pack of cigarettes every day from the time I was 18 until I was 50 years old.

I see the doctor about every 6 months the last year and half. I hadn't seen a doctor for almost a year from June of 2004 until September 2005. Didn't see any sense in seeing the doctor when he couldn't do anything to help.

I am self-employed with no insurance and I am still paying on medical bills from 2003.

I have 4 brothers, 60, 59, 57 & 38. Only one has been tested and he did not have it. The others don't want to be tested because they don't want to know. The older 3 have high blood pressure, one has diabetes, had an overactive pituitary gland that had to be removed when he was in his late 20's. The 59 year old has had several heart attacks and his heart is over 50% dead. His in fracture ratio is very low. He can't work.

We were born in Illinois. My dad was a tenant farmer and my mother was a stay at home mom. She never worked outside the home. We were poor.

My dad died probably from emphysema in 2000 and my mother passed away 6 months later from a heart attack since she was found sitting in her chair with her socks in her lap.

So I have not been able to find out who had what from them.

Both my daughters have not been tested. One of them had her son tested and he did not have it.

7/27/2006 I wanted to add that I am 61 years old and most of my problems at this time seem to be digestive problems, gas, bloating, and stomach upset.