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Birth Date Gender Heritage Nationality Alpha type Alpha gene Alpha Level Diagnosed Last FEV1 Treatment Surgery Siblings Children Grandchildren |
Tammy I live in Rockford, TN. I was a Book-Keeper. My favorite color is Blue I enjoy cleaning, reading, and walking. I like all music with the exception of rap. My favorite novels are by Fern Michaels. My favorite quote is "If and Buts were candy and nuts..we'd all have bowls full."
12/26/04 Hello to all. As all of you know most inherit land, money, jewels but my parents seem to think that wasn't enough so we got the gift of Alpha One (lol). At least I know what I am dealing with and I am ok with it all. In November of 1985, I had completely stopped breathing I remember trying to get up that morning and having to fight my way the will to awake. My pcp was from the old school of medicine. He thought at first it was my nerves (he had been treating me for my nerves because he knew the lady I worked for). He figured it was stress. After this had happened, he put me in the hospital and started testing. He first thought I had cystic fibrosis because I also have a digestive problem. That was negative. He then said he had one more test to run, said the odds were 1 in 100,000 or greater. Well BINGO, I was an alpha one, PIZZ. He then proceeded to explain and direct me to pulmonary doctors. At first, there was nothing available for the alpha one patients other than oral meds and learning your limitations. For the next three years I just kept going and taking meds. Life was pretty much the same with exceptions of knowing what I had and adjust my life accordingly. In April 1988 the doctor stated they had a treatment available for A1AD, after reviewing everything and getting insurance into place I began my weekly infusions. Boy was the rollercoaster ride beginning. My body seemed to handle the infusions ok w/exception of draining my energy. In 1990 I had exhausted my veins and opted for a port-a-cath. It was truly a blessing and made the whole infusion thing smoother. My first port lasted 10 years and then I got staph and they removed it. Two weeks later I had another one put in the left clavicle. This time it functions well and no problems. I worked as bookkeeper until Feb 2003. I then applied for disability and received it on first try. My lung doctor has spoken with me about lung labectomy but stated he isn't sure now that it would help because the damage is throughout the lung and not just in the bottom. We have been reviewing all about lung transplant. I am on O2... 4 1/2 - 6 liters with exertion. I am now trying to keep up my walking at least 3-4 miles daily and trying to keep my body and muscles toned. We are doing everything to prepare for the day when I go on the list. Right now my FEV is 29%. I have basically maintained for the moment and have learned how to listen to my body and knowing when it has had enough and needs to slow down. There are 6 children in my family - my brother and one sister do not have it, two of my sisters do, and one hasn't been tested. My mom has it as well. My father is dead so we know in order for us to have a ZZ he and mother both either have it or are carriers. My mother and one of my sisters get weekly infusions with my mother being on O2 24/7 as well as myself. One of my daughters has been tested and she is just a carrier MZ. Anytime I get down, I think about others who can not manage their diseases due to one reason or another. I actually feel grateful for what I have because I know what I am dealing with and there are no surprises. I know one thing I have a choice though. I can choose to live in the disease or live with it. I have chose the later. I don't complain a lot nor do I let it get in the way. I am not going to let this disease get the best of me without a fight. My doctor told me that if I give up or give in it will defeat me. My goal is to out live the odds I had been given 20 years ago. If I made it to 30 I would be lucky and 40 would be maximum. I am 44 years old and still kicking. May the force be with you as it is with me!
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