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Birth Date Gender Heritage Nationality Alpha type Alpha gene Alpha-1 level Last FEV1 Diagnosed Treatment Surgeries TX Listing TX Hospital Siblings Children Grandchildren
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Lucille Karns a.k.a. Cindy or Cinder I live in Lakeport, California. I am a Student. My favorite colors are Black and Violet My favorite author is John Stienback. My favorite music is easy listening. ("Feelings") I enjoy collecting antiques. I have a fish as a pet. My favorite quote, "Que sera, sera." (What will be, will be) 3/11/2009 Well to my mother I am just Cinder, to many of my friends and Families, I am Cindy, and to the doctor's who know me on paper only, I am just Lucille. I have a daughter named Starla, who is 34 years old, and has 4 boys and one girl. She is a MZ alpha. I have a son Tommy who is 30 years old, has a 2 year old baby, and inherited 3 little girls. I also have Bobby who is 14 years old, and is an MZ alpha. My mother and I have been raising my daughters four boys for at least the last 10 years. So with Bobby that makes five. A recipe for insanity. I am a soccer mom, baseball mom, and also a Scout mom. I am a single mother as well as a college student. I was born and raised in Anchorage, Alaska. I spent my first 24 years there, in the land of the midnight sun, the last frontier. I married an Eskimo and lived in a village, and commercial fished in Bristol Bay, as well as subsistence fished. My two older children are Alaska Natives, whereas I am a Native of Alaska..... My next life has been here in Lake County. I live on one of the oldest, and largest natural lakes in North America, Clear Lake. We are surrounded by mountains, and one sleeping Volcano, Mt Konocti. I live in the country, about 3 hours north of San Francisco, California. The famous Napa Valley is just a couple of hours away, but I also live in wine country. So have the best of both worlds if I so choose. Our house is over a hundred years old, and we are four generations within these walls. My younger son Bobby is Hispanic. Our front porch often looks like a meeting at United Nations. I had been sick often when I was a child. It took a little over 7 years to find out I had Alpha-1. I first was told I had Bronchitis, then it went to Asthma. After some years passing, they started calling it COPD. Then after a few more years they changed it to Emphysema. I finally got sick and tired of being sick and tired, and said I don't care what it is, but we need to put a name on it. I was told on May 10, 2002 that I had Alpha-1. I was so far down the disease process that nothing could be done. Oh and I did not have insurance. So I was sent home to die I suppose. Oh was told to call him if I had a problem. So for the next year and a half my life was going from my bed upstairs, down to the dining room table. I would have lung infections about every three weeks. It would start with sinus draining, and then lung infection. The cycle was insanity, and every day I walked around with burning between my eyes, as if I had gotten water up my nose. Well one day I drug myself over to the library and got on a computer. I first found the lung transplant line. A young girl Luba was awaiting a double lung and heart transplant. She told me, that everyone was eligible for a transplant insurance or not. She also told me, if Alpha-1 was genetic, just type it into the computer and there should be a foundation. I first got a hold of a part of the the foundation that was going under, but would be regrouping and get back to them in six months. In the mean time Sue Landers said that I needed to get a doctor and hospital together, so I could get infusions at the hospital. Next I got the foundation to give my specialist Alpha-1 information. Long story short, the same week I was going to divorce my doctor, he called me up and set me up with infusions in my home. I also got a referral to UCSF for transplant. I was evaluated, and went inactive for two years. I was stable and went off the transplant list almost two years ago. I did a 13 month COPD study out of UCSF. I have since had pneumonia, lost that pesky 20 pounds I needed for transplant. I do not recommend those die diet's, lol. I may have to go back and do re evaluation again, for have been loosing ground, after being stable for a few years. I am like the proverbial turtle, walk and stop. Some people may have called a diagnosis of Alpha-1 as a death sentence. To me it was getting back my life. Sure its a different life. I have destroyed lungs. I do not have the burning between my eyes every day. I do not have lung infections every 3 weeks. I went back to school, not full time, but still doing what I love best. My world was Alaska, and here in the country. Since finding out about Alpha-1 my horizons have been widened. I have gone to Washington DC. St Louis, Texas, San Diego. Gosh have been to so many places since croaking from alpha, then I did when I was well. I guess I can say my glass is half full, not half empty. |
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