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Birth Date Gender Nationality Alpha type Alpha level Alpha gene Last FEV1 Diagnosed Treatment Siblings Children Grandchildren |
Jim Hosley I live in Pine City, NY I am a retired Postal Clerk. My favorite color is Blue. My favorite music is The Oldies. My favorite pastime is fishing. I have a cat, Spikey. My favorite quote is from Romans 8:28 "And we know that all things work together for good to them that love God, to them who are the called according to [his] purpose."
5/25/2006 During a routine physical I complained of shortness of breath on exertion. My doctor, who is wonderful, did some tests and when my protein level seemed off did a protein profile and found my AAT level at 2.4 micromoles/liter. He then sent my blood sample to Dr. Ed Campbell at the University of Utah Med Center "Heredilab" and it came back same level with a phenotype of ZZ or possibly ZNULL. I was referred to a pulmonologist who put me through all the usual tests and my FEV1 was about 92% of expected. The only other Alpha patient he had was elderly and bed ridden. The information he gave me was from some National Thoracic Society text books that were 4 years old. In June of 1998 I found the internet and the a-mail list started by Claud Baril. After some soul searching I decided to learn as much as I could about this alpha thing. I was downloading everything I could find and taking copies into the pulmonologist. I was also taking copies to my family Doc. The Association produced a 9 minute diagnosis video and I got some copies. I took one to the pulm doc. Four months later they called me and told me to come get it. I still don't know if he saw it. I also got a bunch of the flyers put out by Bayer and put a display with about 300 flyers in the pulm docs office. About a month later I went back to refill if needed and the display rack was found on the top shelf of a closet. During this time I was working at the Local Post Office as a window clerk. I was constantly sick because of all the exposure. In January of 2000 I was chosen( candidate number 13) to be part of the "Sheep Juice Study". We went to the University Of Florida at Gainesville and met Dr. Mark Brantly. Dolly the cloned sheep had offspring that were genetically altered to produce AAT in their milk. The AAT was harvested purified and dried and put in 1 gram bottles. We mixed this with sterile water and used a nebulizer to administer it for 56 days. We had a bunch of tests at the beginning including all the breathing tests and a BAL. Bronchial alveolar lavage. During the bronch, they spritz in 100ccs of saline and they suck back out as much as possible getting some epithelials and looking for the compounds resulting from elastase being encountered by the AAT protein. This was done 3 times. The beginning, after 28 weeks, and then at the end. These resulting compounds were found but not in the quantities they were hoping for. This was phase one. Phase 2 was done but again the results were not as hoped for. Bayer invested 25 Million dollars in the project but the study was discontinued. PPL Therapeutics (The company that started the study) almost went bankrupt and the 3 herds of genetically altered sheep were destroyed. It was during the testing that it was determined that my phenotype was ZMmalton. Dr. Brantly also found my serum level to be 4.6 micromoles/liter. During the last 6 years I have lost about 30% lung function and have left my pulmonologist. During a lung infection I was having a problem breathing and rather than getting in to see the pulm doc I had to go to the emergency room for treatment. The pulm doc insisted on a sputum sample before he would treat me. I called my family Doctor (have I said he is great) and he called in an antibiotic and pred taper. During every office visit with Dr. Parker we discuss the "new" information I have taken to him and he "has read it". He was also my recently departed mother-in-laws Doctor who cried when he gave her the diagnosis of pancreatic cancer and also showed up at the Funeral Home during the viewing hours. In April of 2004 both my wife Carol and I were diagnosed with type II diabetes. I take 2 meds a day for it and seem to be keeping it in line. I retired October 31st of 2003 and since I have stayed pretty healthy. I have been getting sinus infections quite often and last year took 5 antibiotics from Jan to May before I could shake it. Carol was diagnosed with Breast Cancer in July of 2005, had a lumpectomy in August and just finished Chemo 3 weeks ago. She is going to start radiation soon. Carol has been off work since Feb 3rd and is dreading going back to work. As I said Carol's Mom was diagnosed with Pancreatic Cancer December 30. Hospice was called in on February 2nd. Carol moved in to her mother's house and cared for her mother until she died April 6th. Even though she was there Carol still has not come to terms with her Mom's parting. I am the local support group leader and would be happy to answer any questions anyone has concerning Alpha 1 or any other aspects of my life. Jim
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