Alpha One Antitrypsen Deficiency
Vail Daily News for Vail and Beaver Creek Colorado – News
In Denver, a respiratory therapist suggested a blood test. A positive result would explain everything. And what if it is? Canada wanted to know. What is the cure?”There is no cure,” replied the therapist. “Only a lung transplant.”
Dean Canada is among an estimated 100,000 Americans who were dealt a pair of bad cards, two corrupted genes that produce a condition called Alpha One Antitrypsen Deficiency.
This disorder causes the livers of its victims to work improperly. The liver prevents the release of a protein needed for healthy functioning of the lungs. Most victims begin suffering when they are 39 or 40.
More at http://www.alphaone.org/
The very description above was described to me, That I would die without a lung transplant. That was almost 7 years ago when my fev1 (result of common breathing test was 31 %). Three years ago I had that lung transplant, and was only in the hospital for 5 days. My breathing & health seemed fine, however I was told 1.5 years ago i was in rejection needing another transplant. 6 months ago, I as told I needed a hip replacement due to the pretnisone I have taken since my trx. I has that replacement a month later. Today I walk, and talk, and breath almost effortlessly. I know I need another transplant, and yes, even another hip relacement on the other hip. While everyone expected to, and worried about me for all these recent years, my greatest pain is the deaths of so many around me who worried and prayed for me. My very own daughter died unexpectedly 9 weeks ago, today is her 25th birthday. How could my heart be more broken? Regardless I appreciate the gift of my donor, and every breath is a blessing to me. Never Give up, and if for no one else than those children, spouse or parents still with you…..LIVE and fight for every breath, every dat is a gift, thats why they call it “the Present” Amen
I just found out one of my very best friends from school days has this condition. He in nearly sixty years old with a 4 yr. old son. I was wonder-ing what it takes to be a lung doner. Any answeres would be greatly appreciated.
I don’t think living lung / lung lobe donors is very common Tim. Here’s the Lung Associations guide to lung transplants
My mother. She had it. By had, you can guess the rest of “my story”. October 2005, her legs bagan to swell up, so eventually we took her to the hospital. She always hated it there, didn’t like it, except when giving birth. It was the October school holidays for me, my dad took her in, and I stayed at home, then later that day we visited her. She was in there for 3 weeks. They told us she had the alpha one antitrypsen deficiency, and explained it to us. Basically, if she didn’t get a lung transplant, she would die. We were shocked, to be honest, I didn’t beleive them, because my mum is a fighter, always has been. So when she got home, we cleaned the house, and made sure there was no smokey smells around. In hospital, she had not smoked for 3 weeks, which was amazing and so good. She didn’t smoke for about 3 days after that, but then she asked my dad to get her some. By this time, she was on oxygen at the house only for 8 hours a day. Christmas came and went, but by New Year she was back in the hospital.. I was left alone at the house with my brother, who was so mad at me for no reason, so he took it out on me. After she came out of hospital for being in there for about a week, she was put on oxygen constantly. The oxygen tanks scared me, big black massive things. I accidentally changed it wrong, and it blew open and mum burned her hand.. I felt so bad, I was crying for ages, in shock and guilted. But mum said it was all okay, and she comforted me. It was okay then. Mum hadn’t been at work since August now. It was 2006, a new year, a new everything, hoping for new lungs too.. The months went by and she had good days and bad days, some where in the morning she couldn’t breathe at all, and some when she was perky and so happy. She was on loads of medication, for different reasons. October came in 2006, we were hoping that she’d not go back into hospital. I was at school when I got a phonecall from dad, my teacher told me, mum was in hospital, but I was not to go with them. I thought, ‘shes’s been in hospital before, she’ll come through.’ And she did come through, but she was literally moments from dying. When I went to see her in the hospital after school. She was on a ventilator, breathing for her. She could barely talk to us, I was so scared. She had this mask on, and mum hates them, she gets so clausterphobic, but after a few days, she could take it off and was back on oxygen with the nose things. She came back, not smoking for a few days, but then she just had to.. Christmas came and went again, then January, 2007.. The 25th. She was only 47. I got a call from my dad saying “Come to the house.” So I went to my house after excusing myself from school. I went up, the doctor was there, an ambulance and my dad in his car, he told me to get it. We followed the ambulance to the hospital. We were told to wait for a bit in the waiting room. The doctor came through and said, “I’m sorry, I don’t think she’ll make it this time..” He said from the start, “There’s no cure, she’ll only be better if she gets a lung transplant.” Everything was against her. She was underweight, she smoked and such. She had to put on weight, and stop smoking before she could get a lung transplant. So, we went into where she was. She was unconcious, had been like that since 2pm, which is when I got called out of school. I held her hand. Cursed under my breathe because she was wearing a mask. Though, it was holding her tongue down too, so she didn’t choke. Dad and I were there for a few hours. He was on one side holding her hand, I was on the other, doing the same. I remember the nurses came along and kept checking up on us. It was silence. At her mouth foam began to come out, I told the nurse, she cleared it, and went behind the curtain. It did it again, but this time, she turned blue, and I looked at the monitor, it was a flat line. I burst into tears and just cried for ages, still holding her hand, I didn’t want to let go, not just then. But I did, I hugged dad, he needed me. We knew, she wanted to stay, but she couldn’t, she didn’t have the strength.. Another nurse came along and checked to make sure if she was gone. She was. She drowned, her lungs filled up with fluid and she drowned, but it was technically down to the alpha one antitrypsen deficiency. Since it’s genetic, I went to get a test a while back, I don’t have it. But, does my brother? He’s terrified of needles, and won’t get it done. So we don’t know, and he is a smoker.. I’ll let you know something, she lived a good life. If you have this condition, don’t smoke, and make sure you have a healthy diet, and get yourself on the list as soon as possible. Thanks for reading.
Thank you for sharing that Lisa.