Amy's Mom

Hello, My name is Amy, and I just stumbled upon this site. My mom Margaret died of scleroderma on April 3, 1999. She was an incredible person and the loss is still devastating.

My mom was 60 years old and worked at a day care center, running around after little ones all day. In early Fall 1998 she noticed that she was having high blood pressure and her fingertips got red dots on them and tingly in the cold weather.

In mid November 1998 my aunt called to say that she was at the hospital with my mom-they thought she was having a heart attack-she couldn't breathe-obviously I was devastated at this news. I am an only child and at that time my husband and I had our first child, Sarah who was 3 mo old. After transferring my mom to a larger hospital and stabilizing her they began tests. We were informed that she needed bypass surgery due to clogged arteries. I felt a little relieved thinking she would be o.k. after the surgery; however, more tests puzzled the doctors-" kidneys not strong, lungs not working well, liver damaged" they finally realized it was scleroderma.

I remember being so shocked when the doctor told me that she was really ill and had been for a long time-I thought it was a bad dream. When they attempted her surgery, they could not complete it as they discovered scar tissue all over her heart-it was so hard to explain to her when she woke up that she had to recover from being opened up and they only got some of the scar tissue off her heart. The doctor said then that we were looking at about 1 to 1 1/2 yrs. I was devastated.

She went home on tons of meds-had to move in with my aunt and every day during the week I spent the day with her. She was just so weak. My mom was an incredible mom and loved my daughter so much. I just couldn't believe how fast my mom went down hill. She was hospitalized in late December and early February due to fluid build up on her lungs. She had an incredible doctor who arranged hospice for us-my mom needed to be on oxygen and I had to give her a shot daily.

Not a day goes by without me thinking of her. I look at my children ages 7, 5, and 1 1/2 and know how much she would have enjoyed them. This is such a scary disease as it effects people in such varying degrees. We are convinced that my mom was probably sick for years and didn't know it. I have peace knowing that she was a believer and we will meet again. Thank you for listening. Amy

Email: amydnicholas@yahoo.com