|
Birth Date Gender Alpha type Alpha gene Diagnosed Treatment Siblings Children Grandchildren |
Rita Brown
I live in West Palm Beach. I am a Operations Coordinator/Executive Assistant. I have a chocolate poodle named Pewter. My favorite color is Lilac . I enjoy crafts of all kinds. My favorite book/movie is The Abyss My favorite music is R & B and Reggae. My favorite quote is "Live, laugh and love!"
11/15/03 I am what you call a newbie. I started smoking and inhaling when I was 15 and had played at it since the age of eight (not much to do in a little farm community of 500 people). I did quit for eight years once and five years another time and I definitely quit nearly seven years ago. Since I was small, I was told I had "Hay Fever" and allergies. As a younger adult, I had bouts of bronchitis at least twice a year. About seven years ago I started noticing SOB. My doctor said it was from smoking, so quit! So I did. It got worse and I continued to need either a respiratory treatment or antibiotics at least two or three times a year. My PCP retired which forced me to find a new one. God bless them both! My new PCP is very thorough and when I had a liver enzyme of 41%, just 1 point over, he insisted on one more test. TA DA!!!! I have Alpha-1 and am a ZZ. That began my journey of tests, tests and more tests. I have found I have sleep Apnea, and use a CPAP now. Thanks again God! I started my Prolastin infusions 6 weeks ago and thank God I have a wonderful home health care nurse who has a heart and comes once a week. I am planning on a port though as this is going to be a long long long haul. My doctor is scheduling a CT scan of my lungs and liver as my chest X-rays show nothing. My insurance is fighting the liver scan though. Since my diagnosis, I have spiraled downward due to the depression, fear, anxiety, and whatever else is attacking me. I can't walk from here to there without stopping and hanging onto something. I was tested for my oxygen saturation a week ago. I started out at rest at 88 and went downn to 65 in about 60 feet of walking, but my pulmonary refused me oxygen. He said lose weight and go to rehab. I can't lose weight if I can't move! Fortunately, I have found another pulmonary specialist who has other Alphas and who has agreed to take me on. I have to wait until Dec. 23rd though, so MERRY CHRISTMAS TO ME! I will have a caring understanding pulmonary. My sister, my only sibling, has also been tested and guess what???? She is a ZZ too! But, fortunately she ahs no symptoms. We participated in a sibling study that was done for Harvard University last month, and plan on doing any and all studies that we can. Our children are afraid to be tested due to insurance difficulties, so we are encouraging them to be tested anonymously. I was in a three year relationship which I thought was leading to marriage, but when I started having all these problems after my diagnosis, his reaction was not what I wanted to see, so I moved out and bought a small mobile home and now I am facing the future alone as far as companionship, that is why all of you are so important to me. I want to meet and get to know and become friends with as many alphas as I possibly can. My daughters and sister live in Iowa, a long trip from Florida! My son is here, with his family, but he is a P.A. and is always on call or in surgery. I am going to fight this fight the best I can, and try to keep a good attitude and live, laugh and love and enjoy life. I know it will be a fight, but I'm a tough old farm girl!!!!
|
|
Submit or Update your Alpha-1 Story on Spiderspun Copyright © 2000 by Spiderspun. All rights reserved. |
|
