AA since 84 and going stron!!!

From: Barb
Email:
Date: 5/13/2001
Time: 11:05:15 PM
Remote Name: 24.169.74.83

Comments

Dear Bruce,

Thanks for the invitation to join you forum. I will gladly share my experiences in hopes they will benefit others. A question for you: “Do you like popcorn?” Hope the response is “yes,” because there has been a link between popcorn and platlets. Though not scientifically proven, a number of AA patients have reported (and I’m one of them) that eating popcorn helped extend the life of platlets. Try a least a cup or mor a day. You have nothing to lose and if you like popcorn, that’s even better. Just be careful of the sharp little fragments of the kernel that usually get stuck in your teeth. (You mentioned your struggle with platlets). Funny, but I kept a chart of all my blood counts over a period of about three years. You may know that I was diagnosed with AA in 1984, back when the current therapies were experimental. I was one of the patients in the original trials. I received ATG (horse instead of rabbit) in 1984, 1987 and 1990. After making major lifestyle changes in 1990, I’ve done well without transfusions and medication until now. I received my treatment at Fred Hutchinson Cancer Research Center in Seattle, Washington, where the early trials were conducted. I believe surviving this disease is one part medicine, one part support from friends and family, and one part attitude. It took a year and a half for my diagnosis of AA. I was in the Air Force at the time. It wasn’t until the monster was named that I started doing better. I also had another thing going for me. A doctor told me a story about a patient he knew who had AA. This was before advanced treatments like those available to us. He said she was supported with transfusions for ten years, afterwhich, she suddenly “recovered.” No one could explain why. My goal became the survive for ten years in hopes of a spontaneous recovery of my own. Although I have had ATG three times, seventeen years later from the date of my diagnosis, I have essentially recovered. I haven’t had a transfusion since 1991, require no medications. My counts are a long way from normal, but my body and I have an agreement. I will do my best to take care of it, and it will do its best to function as normally as possible. I will keep you in my prayers knowing all the goodness that can be sent your way because I have experienced it myself. Barbara Purvis Columbia, SC (803) 783-9916

P.S. When I have another moment or two, I will post to your forum. Which, by the way is a wonderful idea.