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~ You are now in Jules's journal ~ |
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Birth Date Gender Heritage Nationality Alpha type Alpha gene Serum level Last FEV1 Diagnosed Treatment Siblings Children Grandchildren |
Julie Knutson I live in Chisago City, MN. I am a Psychotherapist, Qualified Mental Retardation Professional, & Patient Support Advocate. My favorite color is Blue, Yellow and Lavender My favorite authors are John Stanford, Nora Roberts, Stephen King, Mary Higgins Clark. My favorite music is Country, Classic Rock, Classical Piano I have 3 cats: Lady Chloe, Miss Daisy Mae, Casper, Jr., and all of God's creatures. I enjoy crocheting, beading, crafts, fishing, camping, reading. My favorite quote, ""I don't give a rat's butt....." (ha)."
7/12/04 Hi All !! Boy, my story... where to start. It seems so surreal, yet this is all really happening. Fall of 2003 I learned that my 69 year old Father has cirrhosis of the liver. He was told it was from drinking. I will never forget his first words when he sat down with my brother and I, he quietly said " Well, I guess I really messed up" I sat there totally stunned. He was sick, very sick. It broke my heart and I thought "how can this be? He has always been so healthy?", "Daddy? My Daddy?", "No Way!!" I looked at him and realized he was serious and his heart was breaking when he told us. I prayed right away, "No God, Please this can't be happening" After a few days of really thinking about what he told us, my mind began to work again and I thought "Drinking? No Way!!!" I grew up with this man and I know he was not that kind of a drinker. I began the many hours of being on the internet learning about Cirrohosis. Good Grief!! I had no idea there were so many causes. Hmmmmmm...just what had he been tested for? Anyway, my brother and I went to a Dr's appointment with him and I was not afraid to step on anyone's toes. I told them I did not agree with the alcohol use as being the cause, I said "that is way too easy...... just what has he been tested for?" They decided that they could do some more markers for other conditions, which is what they did. At some point it came out that he was a carrier of Alpha 1 Antitrypsin Deficiency, he was an MZ and his level was about 72 or thereabouts. It still didn't click with anyone that this was the cause of his liver disease. Then came the holidays. I shared with my parents that I wanted to be a live liver donor and I would like to be evaluated. On New Years Day, he told me that he couldn't let me do this for him. So I let it rest for now, I respected his decision. But...there was underlying desire that I needed to pursue this, yet how was I going to do that and not disrespect my Father's decision? I called the transplant coordinator and had a long talk with her about this and we agreed to try to at least convince him to allow me to go through the evaluation process to see if I am even a match. Then we can have all the information we need to make the most informed decision we could make. He then agreed, yet,no commitement, not yet. On January 6th I had the first test for Alpha done, the level came back at 31% mg/dl. My Doctor was confused and didn't really understand what this meant. She then took more blood to test my liver function. While waiting for those results, I contacted the transplant coordinator again and told her what the level result was, she explained that a genetic test needed to be done. So... I go to my Dr for a third time and have more blood drawn. I HATE needles!! I get my liver function results, it is very good, no problem there... THANK GOD!! Now I wait for the genetic test results. Meanwhile I say nothing to my Father or Mother, I stall them. Somehow I knew there was something wrong. My Dr calls me and tells me that I am a ZZ and my level was at 29%. HUH?!? What does that mean? Hmmmmm.... I tell myself "ok, take it easy, don't panic" Now I wait for an appointment with my Father's Dr. to discuss being a live liver donor. I think maybe he will tell me something different. Yeah, I am ok, don't panic. Then I pray!! I try not to research A1AD on the Internet, the more I learn the more reality set in. I am deficient. Is there anything wrong with me? I know my liver is ok. Calm, be calm Jules. On February 6th, I go to see my Father's Doctor, my brother is with me. I am nervous as hell and scared. The Doctor comes in and he just looks at me and says " I am stunned, absolutely stunned... you have the disease", I look at him confused, my heart seems to stop, everything seems to stop, all goes quiet. He says to me that I am a ZZ, which means that my Mother is at least a carrier as well. I look at my brother and realize that he looks really upset and I am wondering why. Then the Dr. tells me that I cannot be a live liver donor for my Father, and I need to get checked over very well, I need to see a pulmonologist. I think " a what?" "what's that?" Oh, a lung specialist, why? Ok, I think, better do what the Dr. says. I won't argue. I am in a huge state of denial. Hoping against hope that someone will tell me that I am ok and I can help my Daddy. I go home to my Parents house to tell them. I walk into the house and see them. They are happy to see me, the dogs are happy to see me. Yet, I am about to shatter their world. I tell them I need to talk to them, they look at me and realize that something is wrong. They sit down at the table with me. I don't want to tell them, my heart is completely broken now, I don't want to hurt them. I realize at that moment how wonderful they have been to me and just how much I truly love them. I begin to tell them first...." Dad, I am not going to be able to help you" He comes over and holds me and I start crying and I am holding on to him for dear life. I DO NOT want to lose him. But, I have more to say, "The reason I can't, is because I am a ZZ, which means Mom, that you are at least a carrier as well" I will never forget the looks on their faces. Utter shock. I think "wait, wait, I am wrong, the Dr's don't know what they are talking about" yet, I know. My Mother grabs a hold of me and she is holding me tight and saying in my ear "My Baby, My Baby." We all sit and cry and hold each other and cry some more. At that moment, I realize nothing will be the same.
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