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Page 1
Bill Poplett, Jason Ingleston, Betty Simpson, Marta Strock,  Allen Crane, Cindy Bowman, Sandie Connery, Sue Fry, Tom Leahey,  Richard Fallstich, Rosemary Bybee, Lynne Bronson,  Pat Potyandy, Millie Felci, Pam Szretter,  ? Dutton, Carl Johnson, C. Starks, Ginny Boisse, Robin Gatzimos, Niel Jensen, Julie Doyle, Cindi Rackley

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Peter D. Duttweiler, Anita Spink, Bill Miller, Noreen James, Pam Hawver, Tom Shirrell, Mary Fran Draisker, Carla Richmeier Brown, Henry Eckert, Gordon Bedford

My name is Bill (54 years young), retired ol Navy Chief, married 33 years this July 2003 to a rival High School’s best gal, Betty. We have two beautiful daughters. Angie graduated from Dental Assistant Schooling last year, and Amy  (plus an adopted ex-Marine son-in-law, Derek) I forgave her! Before all this happened, I was raised in an Illinois farming town of 350 of Norman Rockwell’s finest. My older sister, Sharon, now a disabled nurse, was the first of my family correctly diagnosed as ZZ Alpha-1 (AAT). That was in late 70’s, She developed pnemonia in March and after getting off the vent she was unable to get back to us.  She passed away two days later and gave the gift of life by being an organ donor as her eyes are now helping someon see again.
       I avoided facing it until 1986 when it could no longer be dodged. Going from skin diving, skiing, playing ball two to three times a week, and never sick to having a hard time even breathing and walking at the same time was difficult. Plus the fact I was within two years of retirement and KNOWING I had a big possibility of having what my sister had, and seeing all the changes she was going through. So I went armed with information my sister,John Paden, Pete Smith, Dr. Ron Crystal, and Lung Line provided. With that info and coupled with my family history and sister’s condition, my doctor was pointed in the correct direction at least. Many Alpha’s aren’t as fortunate and bounce from unbelieving doctor to doctor. My Navy doc stated I had the lungs of an 80 year old and he doubted I’d see my daughter graduate from H.S. Okay, he had my attention but not my soul. I transferred to await the medical board with a lot of anxiety attacks.
       However, I still felt like the Lone Ranger, so I went in search of others and a treatment that was thought to slow down the damage to the lungs . . . prolastin. Our Navy wasn’t going to offer it because it was not cost effective. Finally in 1989, I found three others in the area and then in 1992 started receiving monthly (cost effective) infusions. I’m still a little angry over the loss of lung function that could have been avoided.  I have a younger sister, Debbie, also ZZ, and a younger brother Chuck (MM?). I was receiving home infusions until transplant. I feel it’s helped avoid many of the “infections” you pick up at hospitals with “visiting” well and such. Our Mom , Dad and two uncles have passed away from complications related to lung and liver problems. My emotions have run the gauntlet and thank God I have a supportive wife and children who try their best to understand. Since I changed jobs to the civilian market, I worked as a Virginia State Vehicle Safety Inspector for several years and also as a night manager/cashier.
       In August 1996, I went to Naval Hospital Portsmouth and was taken from ER to a room with a view . . . and the 02 and IVs and other noncomforts of home. The FEV-1s had gone from bad to P-poor and my working days were done. I applied for Social Security Disability through ACCESS in Florida to help the case go through the state of Virginia and they came through. Veterans Administration . . . after more tests, lots of paper work, and such it was approved to 100%. Only problem is I had to give up ALL my Navy Retirement Pay for the 20+ years I did because of Congressional laws saying you can’t draw both Veterans disability pay AND military retirement pay. MCV Transplant Team finished my Evaluation Tests and after I’d been on the waiting list for a new lung since Aug. 1997, and with one call for a lung last Dec 97. But the lung turned out not to be good enough for transplant. At least I knew where I was on the list. THE TOP!
       People must realize too, a transplant isn’t a cure all. I could “continue to exist” without a transplant for a number of years. Dr. Fairman of MCV suggested that Dr. Nathan and I to go up there to Fairfax for evaluation at their center in hopes of promoting my chances for quicker transplant and being duel listed. So October 1999 I was accepted for INOVA Fairfax Virginia’s list. With a transplant I’d be able to “live” and get more enjoyment out of my family and life than just struggling to breath in, breath out, type of living. To me that’s not living. So that’s why I’m taking the opportunity to go with a chance of transplant. I’ve lost a lot of friends who had transplants but each has said to me before their passing, “It’s worth it! To be able to breath again, walk a flight of stairs, run with a grandchild or your child again . . . even if only for a year or six years . . . or as in the case of our ol’ leader, Claude Baril who lived 4 months. It’s worth it.” So . . . I’m going for it someday, . . . if I get a donor before my time runs out.
       Friday 4 Feb 2000!!! Betty had left for work and I messed around some computer stuff early so thought I’d shower up first before eating late lunch. I’d only toast and coffee for breakfast so got my 02 turned up and struggled to clean off. My breathing capacity total (FEV1) was at 0.54 or 12%–13%. I’d just finished drying off when the phone rings. 1:20 p.m., it’s the Transplant coordinator Deb saying, “How do you feel and we’ve got a match! No more eating or drinking, pack up, and you and Betty get here soon as you can.” I called Betty’s supervisor’s number like we’d preplanned but as plans go, they’d changed the numbers but we were finally connected and she started for home. I contacted my neighbor across the street so he could keep me company as I put a few items together until Betty got home. He was more nervous than I, but it sure was good to have my friend near while waiting. I next did a group message to many of the list of people online so you and they’d know I was on my way. I gave my key and daughters’ phone numbers to my neighbor, who’d watch the house, mail etc., and Betty and I turned on the cell phone in case of a no go and I drove “fast” with blinkers on for what is a normal 3 1/2 hour drive only took me from 2:20p.m. till 5:10p.m. arriving in the parking garage.
       They hadn’t expected us till about 6:30. Betty wheeled me in the wheelchair up to a conference room where I had a talk with Dr. Nathan and the transplant team to learn the donor was here at the hospital already and that I was earmarked for the right lung and another 2ndWind Transplant Support member was to get the left lung. So we got started. Paperwork was pretty much done, Betty helped me get undressed, things put away, watched them draw many vials of blood, x rays, etc. Thing that was nice was we were moved into the pre-op area where we were answered questions of the transplant team and were introduced to Dave (my lung brother) and his family who were in the next stall. I couldn’t see but Dave’s head, but we were calmer than most who were in there. Ha. A heart from the donor was the hold up in the transplant process as they had a number of people at Fairfax that had to be checked for matching any of them before passing it on to other centers. Luckily it went to a patient in a Washington-area hospital. May have had other organs, but I only know for sure the lungs and heart went to new homes.
       Dave was to go first. They wheeled him out about 10:30 and then the room was just Betty and I alone for few minutes with a nurse every now and then bouncing in and out. I was at peace. . . . I said my goodbye to Betty as only a husband can say goodbye to a loving wife of 31 years . . . and wished I had more time to say so many things that I’d left unsaid before. After we kissed, I headed out the door to the Operating room for final preparations. . . . Our daughter Amy and her husband Derek and our youngest daughter Angela arrived about 11:30 p.m. and my brothe Chuck and his friend Lucille arrived in the early hours. The operating room was something else, . . . yet the professionalism, care and explanations given to me about what was to happen alleviated all fears . . . I also had faith this would be as things were meant to be. I then said a prayer for the donor and his family, thanking them and asking God to take good care of them in their time of pain. I then asked for His will to be done in helping guide these surgeons and medical-care folks in helping me to become better. If things didn’t work out as planned, I told him I was thankful for the 50+ years of living and loving he’d allowed me and to watch over my wife, family, and loved ones. I then heard the Dr. ask if I was ready and I said thanks to everyone there for giving me this chance and as I said the Lord’s Prayer, I went to sleep. . . .
       I understand I got out of surgery Saturday morning about 4:30 a.m. and Dr. Rhee went to the waiting area to inform Betty and the family all went super well. All the prayers, warm thoughts, well wishes and fingers crossed were much appreciated and I can’t express the true feelings I had as I breathed with no effort. Once again I gave thanks for having so much. My Alpha Lung was soooo big they had to give me extra cutting in order to get it out and the new lung was a CMV Negative Perfect Match! The donor was a young man who was very healthy and for now that’s all I know. I was taken off the vent and put on room air with supplemental 02 and no pain whatsoever. By Saturday night/early Sunday a.m. I had only the neck cath, chest drain tube (came out my back/side) and Sunday I was sitting up in the chair. I had an epidural in my back to administer pain meds. Monday the nose tubes etc. came out as I was taken to my room on the 4th floor also the rehab folks came in and started me using a Volumetric Incentive Spirometer—it helps to strengthen the breathing mechanism (by sucking on the tube it causes a “inspiratory indicator.” Also a Flutter Mucus Clearance device and then the wonderful back pounding percussion sessions four times a day to help keep mucus moving and relearning how to cough and breath since the nerve endings were cut, etc.
       Was wonderful to get up and walk outside the room Monday (65 feet), checking my sats and how much strength I had, etc. Even went to the stair well and stepped up and down a number of steps. Tuesday was a repeat except for much more distance (150 feet) and Wednesday 200+ feet and flight of stairs. Only problem Wednesday was my epidural had come out and I’d not realized it, thinking the pain was the normal around the drain tubes. I’d asked Tony (the nurse) about it and he’d made the correct call so a new IV line was set for me to control the pain with a nice little plunger system. Problem was it had a leak so Tony was able to help get it squared away. By this time it was about 3:00 a.m. Thursday morning. Okay . . . here’s when the funny stuff happened. Tony was fixing the IV drip when my bed started to “raise” automatically. . . . I was on a ride up and Tony said, “Hey, what you doing?” “Ha,” I said “nothing. I haven’t touched anything. . . . Seems the bed had a short in it and there I was on a bed raising into the air like a lightbulb changers platform in a machine shop. . . . My main concern was the drain tube isn’t “all that long” and I was connected to it as the bed continued to scissor up into the air. Tony was able to shut the system down and reset it and returned me to earth. So now I have good drugs, a tired patient ready to sleep and off into lalla land I went.
       At 3:55 A.M. I awoke to a “class A thrill ride” as the bed was 3/4 of the way to max height when I awoke!!! Bed was shaking like someone had put $5.00 worth of quarters in the No-Tell-Motel Luxury Virbrator Bed! I reached for the Nurse call button, straining against the sheets it was connected to. The nurse answered can I help you? I said, “Yep! My bed’s rising in the air again!! Get Tony!!” She said, “What?” I said “Get Tony. Now!!! My bed’s rising in the air again! ” Now the poor nurse is wondering “What kind of drugs did Tony rig into that guy’s IV.” . . . Ha!!! Well Tony came to my rescue and it was so funny as he said, “What you doing up there Mr. Poplett?” Ha . . . awh geesh what could I say. . . . So Tony and the befuddled nurse sat me in the chair while they “unplugged” that “Ghost Bed of 4th Floor East” and gave me a “speedier” model. I had another great day, exercise, walk, breathing, learning meds, etc. Just super. Best thing was Dr. Nathan asked how’d I’d feel about going to the apartment. I said sure and he expressed satisfaction that I’d been able to set all sorts of records ever since the commute times to get here. He’d never had a patient leave the hospital this early for the apartments, so we planned for the next day to go to there and then daily Betty and I’d come to the hospital for labs, x rays, rehab, etc.
       So Friday a.m. I was up at 5 a.m. on the exercise bike riding 3 miles and then walked around the halls for about 6 laps before going into room for x-rays, blood draw, breathing percussion and breathing treatments. Doc had came back and given the orders for me to leave, so we got to the apartment about 5:00. Just prior to leaving, Steve Blanton, a liver-transplanted Alpha stopped by with his laptop he’d borrowed from his company. This was great as I’d have to send the Alpha Association’s Loaner Laptop back with my kids to Va. Beach for me to get it made 2YK before it could be used. Anyway my brother Chuck and my daughter Amy and son-in-law Derek all were here for Saturday and Sunday visits. They were amazed at how well things had gone. Problem was Steve’s laptop system had some adjustments that needed to be worked out so he (17 Feb) and his lovely wife Bea stopped by to drop it off as they went out shopping. I’m forever grateful to Steve and his company for allowing me to use it between then and heading home. Another generous act given by an alpha for an alpha. THANKS STEVE AND BEA!! :) Anyway, Sunday I had a diversion back to the hospital to give blood and then returned to the apartment where my son-in-law, daughter and brother all said our goodbyes and Betty and I were relaxing, doing exercises, and learning so many new things. Monday a.m. brought hunger and thirst pangs since I’d not been allowed food due to testing about to start at 8. The bronch was set up and I was given a good clean bill of health though I am taking care of some thrush. I started rehab, one to one hour of treadmills, exercise bikes, steppers, weights, etc. I did this each day. Wednesday continued and after exercise Betty and I ventured out to see the sights. I can’t express how well I felt walking through stores and such without all that much tiredness. IT WAS GREAT!
       I had Clinic day about every three weeks then, which consisted of PFTs, bloodwork, x-rays, and consult with Dr. Nathan and Deb the transplant coordinator. The Dr.’s assistant, from Walter Reed’s Army hospital working with Dr. Nathan as part of their fellowship, removed my two final stitches for the chest tubes. It was then Dr. Nathan asked how would I feel about considering going home next week.? I was elated! Once again it’s earlier than ever experienced, but I said sure. I’ll be returning every three weeks for visits as part of the follow up and must say these folks don’t miss a thing.  Blood work, x-rays, PFTs and occassional bronches. All no big deal with the ability to breathe again.  I am thankfull to MCVs Dr. Fairman, who’d talked to Dr. Nathan about listing me here as a duel listing to help better my chances and the care and compassion shown throughout my workup, my surgery, and to the present has been top notch.  Stay well and be an organ donor—share your life.
Bill Poplett, 660 Raff Road, Virginia Beach, Va. 23462-2157,  (757) 490-5989

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First Name:  Jason
Last Name: Ingleston
Title: Liver

Well, were do I start. I was a very healthy teenager. Last year I got very sick. I was not doing to good. The odds were against me. The doctors didn’t know what was wrong with me. I was shipped to a differnt hospital still very ill. I was diagnosed with Alpha1. After a six-month hospital stay I returned home. I’m much better right now and waiting for a liver transplant. It is a hard battle and I’m looking for someone to talk to one-on-one. I’m hoping that this website will help me. Thank you, Jason
       Jason’s Mom has the following update. Jason developed another disease defrogenic fubrusing dermopathy in January of  2002. After a long hard battle with Alpha and 6 months of being crippled and having fluid around the heart, open heart surgery, etc., etc.  I’m sorry to say that on July 28, 2002, Jason M. Ingleston passed away.
Christina

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First Name: Betty
Last Name: Simpson
Title: Lung/ZZ
Personal: Sex Female

Maiden Name: McClure. Address: 601 Midvale Street, Lynchburg, VA 24502 USA.Phone: 804-847-8702. Ht,Wt,Age: 5' Ft 1", 118 lbs, 54. Married to Leo I. Simpson. Place of birth: Oldtown, Maine USA.
       I was born in the Great Works section of Oldtown Maine, the oldest of 11 living children. I married Leo, who was in the Air Force at the long-since-closed-down Air Force Base, in 1958. We moved to VA in December of that year. We lived in Northern VA for 14 years, then transferred back to Portland Maine for two years, then transferred back to this area 23 years ago.
       I was diagnosed in August of 1984 by a Family Practice Resident Doctor who was doing his emergency room rotation. I went to the emergency room for shortness of breath, chest pain , pain down left arm. Checked for heart attack, possible pulmonary embolism. I was admitted to CCU and they started trying to find the problem. After all the tests they did were negative, this still-learning Resident Dr. decided to run this Rare Blood Test. Chances of having this disease would be slim, he told me. When the tests came back positive, I was told roughly what it was, that there was no treatment, and I would be lucky to live to see 50. He told me to stop smoking and get treatment for any respiratory problems quickly . What had caused the sudden onset of severe breathing problems was never pinpointed during this hospital stay. I guess I was lucky for it gave me a reason to stop smoking right then. I had been a very light smoker for 27 years, less then a pack per day, sometimes not more then a half pack. This was the first time I had ever been in the hospital for a breathing problem.
       After I was diagnosed I was sent to the UVA Hospital for all the PFTs to be done. At that time my FEV-1 was 52%, all other tests were 70–75% of normal. In January of 1990, after finely getting to see a Pulmonary Dr., my FEV-1 was 42% of predicted. In February I came down with a respiratory infection that lasted for 3 months and by June my FEV-1 was 33%. I went on Prolastin this same month and today my FEV-1 is 31%. My Alpha1serum level was 27 MGdL when I started Prolastin. I am on a two-week infusion cycle and two weeks after I first started, it was 69 MGdL. My Dr. thought this was close enough to the 80 figure.
       Of my ten brothers and sisters, two brothers and one sister are ZZ. The brothers are on Prolastin, but they are in worse health then me, mainly because of their living conditions, smoking longer and not being tested until they became pretty bad. I had urged all to get tested for years, but they only saw me once a year and it did not sink in. My sister is not on Prolastin, mainly because of no insurance. She has seen a pulmonary doctor and her PFTs are still pretty good. My mother and father are deceased, both died of cirrhosis of the liver: father at 53, mother at 62. She never smoked or drank, but complained about being short of breath for years. I have four children: three girls and one boy, the oldest is 40 and the youngest is 31. They are all married now . Of course they all have my bad gene and one is an SZ, unlucky enough to get a half bad one from her father. They all are nonsmokers, thank goodness. The youngest is the only one that’s had any respiratory problems. She has some asthma problems and a small amount of lower-lobe emphysema. I think mainly because for five years she was a Flight Attendant and she had one respiratory infection after another. She is back on the ground now, thank goodness, and works in reservations.
       I was awarded disability by Social Security about the same time I started Prolastin in 1990. I had been working from the time I was diagnosed until February. This was pretty rough at first. I missed the people I worked with and the patients I helped take care of. I had worked as a Nursing Assistant for 20 years. I think having worked with pulmonary patients helped me be able to handle my breathing problems better. The downside is I know to well how most ended up.
       I do not have many hobbies. I do a few crafts and crochet a little in the cold months of the year. I have not mastered this computer yet. Leo has to help me whenever I want to use it. We liked to go to dances and used to go a couple times a month, but gave that up about ten years ago—too much smoke. Most of the friends I had revolved around the dances or work. Since I can not do either, they kind of faded away, only hear from them once in awhile. I don’t fit in anymore. We like to travel and are into our second motor home since Leo retired. From Spring to Fall we go as much as we can. Have gone from northern Nova Scotia to Oregon and points in between over the past seven years. Hope to keep it up as long as my health allows. We were lucky since he worked for the Federal Government he was able to retire at 55.
       I have another problem besides Alpha1. In late 1993 I had a 99% coronary-artery blockage and had to have balloon angioplasty done. So far this has been holding well, just had another stress echo done couple months ago and all is ok. I almost died in 93, because I just thought all my problems was coming from my lungs. I never had any severe chest pain, just pressure and more short of breath. So now this hangs over my head, when ever something changes I wonder is this my heart or lungs?
       What has helped me the most has been my husband, my children, support groups, pulmonary rehabilitation and, of course, the medicines. Leo has been doing 75% of the housework for years now. He did all the searching for information on Alpha after I started getting bad in 1990. ( I kind of put it out of my head for five years since nothing could be done anyway.) He did all the fighting with the insurance companies and Medicare the first three years I was on Prolastin . We won every battle, but it was almost a full-time job for him until Quantum took over in 1993. My children have all been very supportive over the years. I don’t know how I could have gotten by without them. My oldest daughter was my infusion nurse for five years until she left home health to go back to hospital work. Support-group meeting have been a big help. Before 1990 I had not seen or heard of a person with this thing called Alpha-1. We have gone everywhere in the state when there was a support-group meeting being held. It seems it is hard to get people out most of the time unless there is something big going on. I just like to meet and talk with other Alphas. The Pulmonary Rehabilitation Programs have been a big help. I have been through two of them, but after I finish I begin to back slide again. I just completed another pulmonary rehab for the third time last week. I am volunteering a few hours a week to help out in the rehab program; it will keep me in touch and and maybe keep me motivated to exercise at home. Have all the equipment I need just need will power. Of course I could not make it without the medicines. The Prolastin seems to have stabilized my lung destruction. I am not on 02 yet, just Proventil, Atrovent, and Azmacort for my breathing; Prozac for depression; Prilosec for my stomach; and one Aspirin a day for my heart. I do take a multivitamin, extra vitamin C, Garlic pill and Calcium every day.
       I am not much of an organizer. I have tried to get the other three Alphas that live fairly close to me to go with us to some of the support-group meetings, but never had any luck. Leo did get the local ABC TV Station to do a pretty good interview with me a few years back. The local newspaper did an interview and article on Alpha-1 in 1997. Am working with the rehab nurses to try and get a support group going here for all breathing problems. Hope to have some luck with that.

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When diagnosed, I went into denial. Started smoking again, got angry, put those who loved me most through alot of hell! I did have friends with computers back in those days, so they looked up all the info. they could find about alpha, there wasn’t much! Most info. coming from NIH, of course. Then I found Richard and Evelyn Herring’s support group! Was asked to sit on the Florida Chapter Board and did so for 3 years. It was then I began my healing process, I was determined to take control of my disease before it took control of me. I got into therapy right away, took many positive living courses and started to realize I had alot of changing to do! I am on a path of recovery now, which includes many priority changes, a spritual quest, and learning to accept and love myself, no matter how “damaged” I think I am. On my good days I can bless this horrible disease and know that I have met some of the most wonderful and loving people, made many friends along the way and know I will be ok no matter what life brings my way! On bad days I think this is all a load of Crap!
       I have a brother, Randy, who has been through two transplants! I look at him and my heart fills with pride, his spirit is so big and his changes are many. This disease brought my bro and I together and I think I am most grateful for that.
       So, I am looking forward to getting to know others. I would especially like to get to know those in the gay and lesbian lifestyle, since I am a lesbian. I know there has to be some others out there that have alpha!

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I first told my story on page 20 of The Alpha Atlas. I will follow the general pattern of that story plus two and a half years updated information. I now use Aerobid and albuterol each two puffs twice a day. I was diagnosed at age 69 in 1992. I will be 77 this June. For three years I had prolastin until a new doctor, at Univiversity of Florida, Shands Hospital, told me that in his judgment I would not become a pulmonary cripple even if I lived for another 10–20 years.For at least ten years I had complained to my doctors about being short of breath. Their answer was I was getting older. I had a sister who died of “emphysema” at 45. This was the only clue to a pulmonary specialist at Shands that I might want to be tested for A1AD. He told me that in his belief I was too old to get it. I took the blood test and it was 28. I knew I had AAT. My FEV1 was about 65%. I am close to 55% now. My parents had no pulmonary problems, but I had two grandmothers who had bronchitis problems. One was very severe.
       I retired at 57, but it had nothing to due with shortness of breath. I am sure getting out of a work envirnment was helpful to my lungs. I never smoked and had worked in a good setting, except for second-hand smoke. Even 30 years ago, when I had a cold, it lasted and lasted. My coughs were unreal. After an all night coughing spell, I became very short of breath and had my only emergency room visit. I keep on hand a strong cough preventive drug as well as levaquin for any cold in my chest.
       I consider myself a very fortunate Alpha. To my knowledge I am the oldest man in Florida with the disease. I walk for 30 minutes at least 5 days a week. I was born in Hartford, CT and lived in Connecticut until 11 years ago. For hobbies I am a genealogist. I also golf, dance and bocce. I am a member of National Alpha1, Florida Chapter and Central Florida Support Group. I am also on the Alpha line, but only e-mail direct to persons on the Alpha line. You asked for my phone # and then it printed as my FAX #. I do not have a fax machine As indicated I was 69 when diagnosed. Maybe I should have said I was one of the original six on Dr. Mark Brantly’s “sheep juice test.”
Allen Crane

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Hello, my name is Cindy and I was diagnosed in December with Alpha1 and Emphysema. I was started on prolastin in March and have had some strange side effects. I have been reading the list now since December and have found a great deal of information that has been helpful. I also have a 44-year-old sister who was diagnosed seven years ago and has been on prolastin for the last five years. She has O2 at home when needed.We discovered that we inherited this disease from both parents. I was lucky enough to get it from both while my sister only got it from one of them. My father is very ill right now with cirrosis of the liver. We suspect that if the doctors knew more about AA1D, he could have been diagnosed a lot sooner. I hope that someday my sister and I will be able to join some of you folks at one of these conferences. I know I have gotten a lot from the different people I’ve contacted. Thanks so much for having this outlet for all of us to share. I for one am glad that I have a sibling to share this with, it’s not easy knowing that your life will be shortened from something that so little is known about. Keep that research going and the more America becomes aware the better. Thanks for letting me spew.
Sincerely, Cindy Bowman

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My name is Sandie. I’m 57 years old. I have four children, eight grandchildren and one on the way…I’m so blessed.
       I was born with Alpha 1 Antitrypsin Deficiency. As a child, I bruised easily. I was also painfully thin. Mom took me to one doctor after another. Tests were done. They said I was “perfectly normal.” My siblings teased me unmercifully, calling me names such as “Boney Maroney.” Mom fed me shakes, every day. They really didn’t help.
       Fast Forward: I was finally diagnosed with A1AD after a 10-day admission for acute pancreatitis, at the age of 43, which seriously knocked me through a loop. However, that diagnosis didn’t come as a result of my admission. Oh no!!
       My hospital appointed doctor decided I was “obviously an alcoholic” since there were no other explainable reasons for my liver enzymes to soar off the chart, as he put it. Two endoscopies without dye and one with dye showed nothing. No stones, no traces of stones, no cancer. And yet, acute pancreatitis with a cyst on the tail of 1.5 cms must mean I was a closet alcoholic. What else?? Funny man, that doctor was…NOT. After being released from the hospital, my lung symptoms quickly advanced. I was literally crawling up the stairs on my hands. It was time to get help—ya think?? And, so, I did. I was 46 then. At 48 I applied for and was awarded SSD. Today I receive total disability (SSD). I’m infused weekly with my liquid gold, Prolastin.
       Unfortunately for me, I can’t work any longer. I miss that terribly. I miss the money as well as the social interaction. When I was first awarded (funny word “awarded,” rather bittersweet, don’t you think?) disability, I wasn’t “all that sick”—though my caseworker with Social Security told me my numbers were bad enough to be awarded my disability within six months—and that doesn’t happen all that often. I should consider myself “lucky”…sure.
       I was limited, but still able to work part time. I worked for as long as I could. About two years ago a complication set in: a new diagnosis—bronchiectasis. I developed one infection after another after another. It seemed to never end. I was so sick of being sick; the flu like symptoms, horrific body aches down to my toenails, the weakness, and the fitful fevers…horrible. I lived on antibiotics, literally. Three (3) months out of the year I was eating one antibiotic or another.
       I had to quit working. My immune system just couldn’t handle exposure to anything nor anyone. If someone “thought” they were getting sick (a cold or otherwise) and I was around them, I normally got it before they did. This was difficult for me because my children and grandchildren are my joy and my world. I was becoming isolated from my family. I couldn’t participate in events with them and that killed me. Still does. Though I haven’t had an infection since May, I still have to be ever so careful about exposure, because I don’t want to go through that again!
       February of 2007 I had one of the most horrifying experiences of my life. The heat (thermostat) must have been set too high. I woke, gasping. I was having so much difficulty breathing. Panic set in; extreme panic. I’ve never tried to breathe so hard in my life. The harder I tried to gasp breath, the more I panicked and so forth—a vicious circle and pattern. I was sweating profusely, as if I had just run miles! (I never sweat.) I started stripping off my clothing, down to my bra. Finally I yelled dial 911! I really thought on that day, in the wee morning hours, I was clocking out. I thought to myself, you’re going into respiratory arrest, Sandie. I didn’t want to die. The paramedics got there and gave me oxygen. Slowly, as they coaxed me, I began to retrieve composure and a more normal breathing pattern. I refused to go to the ER. I felt better.
       Since then I’ve had at least a good dozen panic attacks. Upon a visit to my doctor the discussion about a nebulizer (neb) happened. So, then, when I start to feel the panic well up, like before, when I start to feel clogged and can’t move the gunk in my chest, like before, I use the neb. It not only loosens that sticky gunk in my chest, but it helps me to gain more control of my breathing and establish a more regulated pattern. At first I was afraid to use the neb too often. I didn’t want to become dependent on it—funny ME. Today, I use the neb every morning as part of my routine, along with my Vest.
       I was concerned about the panic attacks. I went to see a therapist. It was something I put off for way too long. I was having serious issues now and knew I needed to learn a new way to think, cope and live. I’ve suffered from panic attacks before. This was no stranger to me, yet this time is so different. My panic attacks began when I was the tender age of 10. I suffered through them until the age of 40 (something). Panic Disorder Clinics were popping up all over the area. I decided to go for treatment once I realized that was what was happening to me. The doctor offered me a viable solution…medications to “control” the anxiety. I looked at her in disappointment and informed her I didn’t want them controlled, medications were nothing more but a band aid. I wanted them to STOP!! I walked out and never went back. There just had to be a better way. For me, there was. I learned to meditate. I learned mantra. Every time I experienced or felt new panic surfacing, I meditated and did my mantra. Slowly, surely, effectively I thought I conquered my attacks. For awhile, I actually did. At the age of 48 my panic attacks stopped. But they manifested into other disorders…phobias. I became claustrophobic and med phobic. Actually, when I come to think about it, I find whatever causes me displeasure or fear or “anxiety” becomes a new phobia.
       Back to present: I visited with a psychologist who diagnosed me with acute panic disorder. I already knew this! Tsk... I had one visit with a therapist. I didn’t care for the way she pacified me. I haven’t been back since. Amazingly, my panic seems to be more under control. Self analysis shows me that once I recognize a problem and then go about validating this through a professional, I seem to be able to maintain some sort of control; hence, the attacks aren’t as frequent and are more manageable. Such has been the case. Since my initial visit to the psychologist and therapist, I’m more in control. This is a good thing!
       Another new development has been Pulmonary Hypertension. A year ago I had an echo cardiogram (EC). I was having irregular heartbeats. They were diagnosed as PACs. That’s when I also found out I had developed PH. I recently had another EC done. My pulmonologist tells me that though it has progressed “slightly” it’s still not severe enough to treat (though severe enough to notice symptoms).
       My quality of life has suffered, however; severely so. I’m not happy. Sometimes I’m not even content. I’m surviving. I’ve lost so much weight it bothers me. I’m not a vain person. I’ve always been comfortable in my own skin. I’m not one of those who have ever felt the need to go under the knife to add or change what God’s given me. However, this weight loss bothers me. It’s a fact of life. We all age. With aging comes physical change. I’ve always allowed myself to age with grace; however being only 94 pounds, when I should weigh 118, has really done something to my ego. Lately, I don’t even feel like a woman anymore. Worse yet, I don’t feel like “me.” The “me” I used to know laughed more, cried when necessary, enjoyed life. The person that’s replaced the “me I used to know” is more afraid to be alone, more afraid to leave home, suffering every single day, doing less.
       I’m trying hard to change that. Honest, I am. But it’s not easy when you can’t breathe. My saturation levels (sats) are still sitting in the 90s at rest and most days in the low 90s upon exertion. Therefore, I’m not yet on oxygen, yet. I still become terribly SOB upon exertion. That sure baffles me…something about diffusion. I still don’t quite understand this.
       I can’t stand (on my legs) to take a shower anymore. Instead I sit in a bath with a detachable showerhead. Even that wastes me. I can’t stand to cook, to wash dishes, to vacuum or dust. I scoot on my butt to wash my floors. I use a stool to sit and wash dishes or at the counter to prepare meals and such. That even takes my breath away because I can’t sit in one position to do all that needs to be done. You don’t just stand or sit still in one position to wash, clean, cook. You’re constantly moving, back and forth. It’s becoming difficult for me to do routine chores—so, they just don’t get done. If someone would come into my house now and look around, they’d see clutter and dust everywhere. It’s certainly not the house they’d have seen five years ago…clean and in order.
       The woman I used to know exclaimed she’d “never” use one of those mobilized shopping carts you see in the grocery stores. The “me I’ve become” can’t get through a daily grocery day without one. The woman I used to know could do all those little daily things we’ve all taken for granted in our healthier day. The “me I’ve become” struggles on a daily basis to do the smallest of routines things—but I still try to do them. Something inside me knows if I just “STOP” I’ll surely die. I’m not ready for that. I can’t. I’ve yet so much unfinished business to attend to. So, here I am…the “me I’ve become” struggling to keep up with “the woman I once was.”
       Transplant is not an option for me. My doctor addresses this topic every time I see him. I just can not do it. I’ve thought about it—over and over—but I can’t get to that spot. I admire those of you who’ve had the courage.
       This is my story and I’m sticking to it.
Sandie Connery
A1AD
Never look down on someone
Unless you’re willing to help them up

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Smoking at age 13 that was cool. . . . Short of breath at age 32 while playing women’s softball . . . was because I smoked . Lots of bronchitis at age 40 . . . because I worked in a factory with lots of lint. . . . Pnumonia, blue lips, loss of weight. . . . I was sick. Thanks to a doctor who had just recieved info about Alpha-1 Antitrypsin Deficiency and a new pulmonologist in our area, I was diagnosed with ZZ antitrypsin deficiency. . . new terms, new disease to me. To this day, Iam the only one in this county that has been tested and came up with the factors for this. I am on a weekly infusion of prolastin with a porta-cath and I infuse myself after some training.
       Now I teach some of the nurses in this area about this medicine. I often say instead of taking up management courses in college I should have taken nursing (ha ha). I feel good and I am still active, but in different ways. I now quilt and go to quilt shows, I belong to a group of crazy women who like to quilt also. I belong to a book group. And I still try to take a class at night at the local community college of something not stressful but fun. I am on O2 and I carry it around on a shoulder pack. I use to carry diapers and school bags, oh how times change. I try not to look at the past but what the future holds for me and I am looking foward to the future and life. I have three children and I am waiting to be grandma. Now that’s a big future to look foward to.This is not a fun disease, as if any disease is, but there is a good life if you let it happen. I did dance on New Years eve, not as much as I use to but I danced.!!

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Hello—my name is Tom Leahey. I saw the email address in the alpha newsletter and thought I’d give it a try. I still work full time in a hospital laboratory, as I’m fortunate to have a desk job. Knew I had alpha many years ago and ignored it until I became symptomattic, approximately 11 yrs ago. At first I couild not get prolastin, then I received it and had a reaction, which was probably anxiety, butno one felt I should try again. I have gone to Lahey Clinic and Danbury Hospital when the studies were being done. Since they stopped in Connecticut, I am under the care of a doctor where I work. I have been getting prolastin for the last five years, as when I went to Danbury, the doctor there felt a “true” reaction was probably unlikely and I agreed to try again under a controlled situation and all went well. Imagine my surprise, I probably could have been receiving it all along. Right now I’m trying to get enrolled in the transplant program at Brigham Young Womens in Boston. I have to get pft’s done tommorrow. I have been feeling worse recently, shortness of breath has increased.
       I had gone to Columbia Presbytarian in NY City two years ago and they told me I was too healthy at that time. I finally gave in to using 02 during the day, though I had been using at night for a couple years. . . . My sister also has and she receives prolastin. When I was symptomattic and learned more about alpha, I told her to get checked as she was beggining to have problems. My hobbies were/are playing billiards and golf, still play billiards, but now am having more difficulty. Hit some golf balls last nite and seemed okay. Of course I ride in a golf cart and playing golf the last few years has become more difficult each year. Well so much for a brief introduction.
Tom Leahey

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Hello to all. My name is Richard Fallstich, I live in Fountain Hill, PA. This is a small town between Allentown and Bethlehem, about 50 miles north of Philadelphia. I was diagnosed with A1AD in early 1998. I was 41 years old at the time. My family doctor since birth (that’s right—he’s practiced over 45 years!) had just retired, so I sought a new physician for my increasing shortness of breath. For over 15 years I have been an active emergency medical technician (E.M.T.) with a local volunteer ambulance corps, so I asked my family and friends, both involved in E.M.S., for their advice and experience with their doctors.
       I feel very lucky that the physician I selected ordered the blood test for the enzyme level right away along with a chest x-ray and P.F.T.s. I see that some folks have been misdiagnosed for a long time. My enzyme level was about 25% of normal according to my doctor. He sent me to a pulmonologist for further evaluation. The lung specialist used the word “abysmal” to describe the results of my P.F.T.s. The FEV-1 test showed 0.926 liters, expected was 2 to 2.5 liters for a healthy adult male such as myself, says the doctor.
       I was put on a waiting list for Prolastin in March of 1998. Finally, in December 1999, the pulmonary doctor gets me the information on Bayer Direct, and I received my first infusion two weeks later! There is a hospital nearby my home that is affiliated with the University of Pennsylvania cancer network. They provide my infusion services there. Luckily, they are proficient in obtaining I.Vs—so far I don’t have the need for an implanted venous access device. I feel extremely lucky and almost a little guilty after reading that some patients have been waiting for several years for Prolastin. So far my liver function is normal, I only have the emphysema, apparently typical with adults.
       So now I continue with various MDIs (inhalers) and take theophylline tablets. The doctors tell me to be prepared to think about possible transplant or lung-reduction surgery in the future if the Prolastin doesn’t slow the progress of the COPD adequately. I’m hoping the Prolastin works like gang-busters. Incidentally, I’ve found an interesting web site about drugs and prescriptions. It is http://www.rxlist.com. They even have info about Prolastin at: http://www.rxlist.com/cgi/generic2/aprotein.htm.
       I still work full-time as a customer support technician for an electrochemical instrument manufacturer, but have had to curtail my field duties in E.M.S. It’s tough to lug a 250 lb. patient down three flights of stairs when you can’t breathe! Although I no longer provide patient care, I’m still the treasurer of the corps and am working on specifying a new ambulance for delivery in Spring of 2000.
       If anyone would like to talk to me about our disease, or send me a note, just to shoot the breeze, etc.—email me at rfallstich@compuserve.com

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I was born in a shack in a coal mining community in Eastern Kentucky on a beautiful spring morning in 1944. I was the fourth child and the third daughter. My father had been terribly hurt in a mining accident three years before and was badly crippled. I admire my father more than anyone on earth. Even though he could not walk and was in constant pain, he eventually owned his own store selling & repairing TVs, radios & appliances and did amazingly well. He died of cancer in 1976. I learned a lot from my father about life and how to “never give up” no matter what comes your way. At 18 months, I was in the hospital for the first time with collasped lungs. Throughout my childhood I was sickly and very skinny. I loved school and made good grades. I especially loved to read. I could daydream myself into such delightful places. When I was 15, a young man with the bluest eyes I’ve ever seen applied for a job in my father’s store. It was springtime and . . . the rest is history.
       We married the next year just before my 16th birthday and celebrated our 40th anniversary March 5, 2000. Our first baby, a beautiful little redhead (Alan, with his father’s laughing blue eyes) joined us in January of the next year.When he was one year old, we moved to Louisville KY and bought an old house with a big yard & garden. Our second child, Linda, was born soon after we moved into our home. I was sick a lot but worked at the local post office as a clerk until my health forced me to retire at 48. I had several miscaraiges before Mike was born in 1967 and our twins (Kathy & Rick) were born two months premature in May of 70. I was diagnosed with Alpha-1 in 1991 after years of being treated for bronchitis and pneumonia. I was listed at Jewish Hosp in September of 1998 for a double lung tx.I have high antibodies so it is very hard to find a match. Marvin retired this month and we will enjoy our blessings (eight of the most amazing grandbabies) and each other for as long as God allows. Many thank yous to all of you who have taught me how to live with Alpha.

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Hi, my name is Lynne and I was diagnosed with Alpha in August 1999. I found this year very hard to accept, I have had to quit my job and find a new me, a lot of changes have happened in one year, adjustments for myself and my family, I think they are taking it hard. I have two daughters and one step-daughter and one son and three grandbabies. I think this organization is great. I have told them they can get support here! I live in Canada and am unable to afford Prolastin which can run you in the neighbourhood of around 1500.00 a month. In the near future, I am planning on fighting with O.H.I.P. to get some sort of coverage. I am phenotyped ZZ and so is my 10 year old son. I also have a brother who has a ZZ phenotype as well.
       This disease can bring you down some days, I try very hard to stay positive, My breathing is at a 1/3% left. I have met some of you over the Internet and have found out some of you are in a lot worse shape, and yet are still positive, That gives me hope that as my lungs deteriate more. It is all up to me and my attitude is going to determine how I am going to be able to cope with it. My girls now, 19 and 21 and 17, are finding it hard to accept that they are going to lose their mom earlier than they would like, but I believe they will be OK when I leave. All I can say is for anyone out there that has this disease, I pray each and every day that they find a cure for this disease, and that for you that still are coping with it, I can understand how you feel, the fear, the anger, the hurt, the pain. So just remember that you are not alone, that someone is going throught the same thing. There was a man who complained of having no shoes, until he met a man who had no feet! I have to say that a lot, some days more than others, but it says it all, doesn’t it! Take care God Bless you all!!!!
Your Alpha friend Lynne

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Hi all Alphas. I was reading some of the stories and I too was misdignosed for years. They always thought that I had chronic bronchitis or pneumonia. I complained to my doctors about my shortness of breath, but they really didn’t seem to listen. I thought maybe I was just imaging this. My doctor, retired so I found another. He is a GP, but he is the one that has listened and and took all the tests. I came back ZZ. I really didn’t know nor ever heard of this definition. He told me he didin’t know to much either. I went to the library and found out about this it. I made copies and I gave them to my doctor and educated him also. I am very thankful to him that he found this. I did have to quit my job and file for disability in March and I’m still waiting to hear from them. Thank you for letting me sound off, it is nice that someone knows what I am talking about. Pat
       Continued:
       Hi, all alphas. It has been a while since I last wrote my story. My sister who is three years older then I had gone to the doctor and she was tested and just found out that she also has Alpha-1, Lung ZZ. She was really scared and I gave her a lot of information on this. I think she understands that what we have is something real and serious. I am keeping her informed as she does not have a computer. She still is working and it is getting harder and harder for her. Her breathing is really getting bad. She did stop smoking about a year ago and she thought she would feel better, but like me the breathing just got worse. She lives about an hour and a half from me and she is seeing my doctor, so when she has her appointments she stays with me on the weekends, which is really nice as we really didm’t see too much of each other. Well I’m still waiting for a reconsideration on my disability, it is such a slow process. Any help some one can give me about this would be greatly appreciated.
Pat

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I was diagnosed with Alpha-1 in Sept 1984. I am married to Jim for 30 years and we have a son Paul who is 27 and a carrier of Alpha-1. We live in Weymouth, Massachuetts. When I was first diagnosed, I was sent home with no hope. They told Jim and Paul (who at the time was eight years old) that I would most likely not live the year out. This was where are lives came to a screeching halt. For a year I stayed in my house. It was not until I decided that I was not going to let this disease take over. My family and I were very much alone with Alpha-1. At that time there was no prolastin no support groups. It was not until three years ago, when we moved from our house of 27 years to a wonderful complex, we decided to buy a computer. I forgot, before that I did find another alpha through my nurse. She was kind enough to get me the information for the Alpha-1 National Association and through that I found the Web site . This was my first connection to anyone else that had Alpha-1. It was the lonliest 14 years of my life. I have been taking prolastin since 1986 and doing very well with it. I have also been many years on 02.
       Today my life is full. I enjoy every minute. Today I have my dreams and goals and I have accomplished many things. Yes I have learned to live life to the fullest with Alpha-1. My deepest goal is to bring the awarenss to others so that they never have to deal with the pain of being alone.
       I have made wonderful friends these three years. There is alway hope, never give that up. We have come so far.
       Your alpha friend Millie Felci

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Hi, my name is Pam. I live in Marlboro, MA with my husband and daughter. I also have a son, three step-children and five step-grandchildren. I was diagnosed with Alpha-1 in 1992. Fortunately, the pulmonogist that my primary care physician sent me to had knowledge of Alpha-1 and ordered the proper blood test. Unfortunately, she didn’t have me phenotyped. My level at the time of diagnosis was 22. Her reason for doing this was primarily because of my age at the time. I had woken up one morning with shortness of breath and was diagnosed with pneumonia and wasn’t getting any better, so they ordered the blood test and pft’s. I went through various inhalers before finding three that work just fine for me. I started on Prolastin approximately five and a half years ago. So far it seems to be working well for me. The first year I was diagnosed, I had pneumonia/lung infections 10–12 times. I have had minimal infections over the past five years, until last year when I was hospitilized for the first time with pneumonia. Last year was actually the worst year that I have had since being diagnosed, having had a lung infection for approximately five and a half months before it had progressed to the pneumonia. All the different antibotics I had tried just weren’t working hard enough.
       I have a large family—four sisters and two brothers. One sister was diagnosed with Alpha-1 earlier this year and was started on Prolastin a few months ago. She has had some bad side effects to this, but seems to be feeling better lately. She was phenotyped as ZZ. I asked my doctor in March if he would phenotype me, he tried, but because I am on the Prolastin the test comes back normal. I would have to go off the Prolastin for at least a month in order to do the test and I am not willing to do this. Since my sister was diagnosed as ZZ I am assuming that I am also. Three years ago, my pulmonary functions tests showed that I was at about 48–50% lung capacity. I am fortunate that I am still able to work full-time, for which I am very thankful. I have a great employer who is very understanding with all my time off for illnesses. My sister and I have been trying to get our other family members tested, including nieces and nephews, with not a lot of success but we haven’t given up. She is in the process of obtaining the “kits” from NIH so that we can get as many of our family tested as possible. One of my brother’s was recently tested—his test for Alpha-1 came back negative, but his liver came back abnormal. He is in the early stages of Hep B. Does anyone know if it is possible that this could be related to Alpha-1? He does have a drinking problem, but he is only 29 years old. My father recently died of cirrosis. We had asked that his doctor test him, but because he didn’t have any knowledge of Alpha-1 we are not sure that he ordered the proper test.
       I have been through the pulmonary rehab program, but I have been thinking lately that I would like to go again. I went through it approximately three years ago. I have O2 for exercise only, but exercise is not fun when you are doing it alone. I really enjoyed the rehab program because you are with other people that have some of the same experiences as you and understand how you are feeling. When I did go through the program, I was the youngest person there and none of the other people had Alpha-1, but did have various lung problems. I think one of the worst things about this disease is that I have such limitations on myself now. I hate/dread walking up a flight of stairs, that I can’t walk as far I should be able to, that I can’t do some very simple tasks. I am fortunate that I married a wonderful man and after being diagnosed with this awful disease he takes very good care of me—cooking, cleaning, laundry, etc. I try to do what I can when I can.
       Well, anyway, this is my story. If anyone would like to “talk,” please feel free to write to me, especially if you live in the Marlboro, MA area.

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I am a 40-year-old homemaker. I was diagnosed with Alpha-1 two years ago. I recently found out that my 8-year-old daughter has it, too. She is not a carrier as I had hoped. Her count is 22 and mine is 21. I must confess that I am totally ignorant about this disease. When first diagnosed by a pulmonologist, after repeated visits and constant harrassment about my smoking (two packs day), I made the decision to no longer be under a physicians care for this disorder. I took my daughter (who was almost never sick) to a pediatrician about six months ago because of a cough that wouldn’t cease. I told him about my A1AD because my physician had told me she needed to be tested. He immediately ordered tests. Her count is 22. THIS DISEASE NOW HAS MY ATTENTION! I am still not under any type of treatment for myself, but my daughter is seeing a specialist at the nearest Childrens Hospital. Hopefully her life will not be affected as severely as mine has by this horrible disease.
       I understand a little more about this disease since my daughter’s diagnosis. I am so tired of not being able to exert myself in any way without having to struggle for each breath. I have always, in the past, been an active person and now my days are spent sitting for the most part. I try to refuse to believe anything is wrong with me, but I have now resigned myself to the fact that breathing is almost immpossible at times. I am ashamed to say that I still smoke. It is the hardest thing I have tried to stop doing. I thought sharing some of my feelings might help in some way. Most people do not understand this disease and therefore I do not recieve much sympathy or understanding from people who could help with my dilema. Thanks for listening.

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Hi, I’m Carl. We forund out about this alpha busness in January 1993. The Doctor didn’t give us much hope. Solution, get another doctor. The good doctor got me on prolastin in November 1994, best stuff next to a tx. Unfortunatley my wife was a big time worrier and her health failed. I lost her to liver cancer in April 1999. Then I had two bouts of pneumonia and my company asked me to take medical retirement. Which was a very good thing cuz I couldn’t do my job very well being out of breath all the time. So now I’m doing very well, rehab three days a week, eat right, keep my weight stable. April 2000, my sister went with me to Barnes in St. Louis for the tests. Being in good shape and old oil field trash, I didn’t have any problems so now I am on their tx list. I’m on O2 at 2 ltrs resting, but I crank it up when working on my old Ford Galaxie. I have a cleaning lady do just about everything except laundry and make the bed. I can’t change the sheets, too hard. I got a letter from Barnes in August saying I wouldn’t hear from them again untill August 2001. I’m not to concerned about the tx. I believe it’ll go well, my biggest need is a caregiver for after the tx. I think I’ll pobably use one of the retired men from church to go along with me. Any way, I’ve learned a bunch from the alpha and 2nd wind chat rooms and hope to broaden my knowledge about this alpha mess. I have extended family in Sweden and I asked my cousin to see if any other of my family members had Alpha-1. So far it looks like I’m the lucky(?) one both here and over there. Which is OK with me cuz I wouldn’t wish this on anyone, friend or foe. Good nite all, I’ve got a car show and BBQ in McAllen at SOFIES SALOON @ 3:00 p.m., need to get my rest.
       REMEMBER DON’T SWEAT THE SMALL STUFF AND IF YOU CAN’T BREATH, EVERYTHING IS SMALL STUFF!
CARL L. JOHNSON

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My younger brother became seriously ill with A1AD long before I began to notice the symptoms in myself. I was running up to seven miles per night in 1992, but began to notice that I could never quite get enough air into my lungs while exercising. Developed knee problems and eventually gave up running. Then, I got out of the service (served in USAF from 1980 to 1992) and went to work driving a truck. That’s when I really noticed things were not quite right. Especially after a long night driving to a destination, getting up early next day and having to help unload freight. I’d get very short of breath. Frighteningly so. But it wasn’t until 1998, when I was out for a walk one night at home, that I lost my breath so badly that I thought I’d fall over. Scared me enough to finally go to the doctor and get checked. I informed the doctor about my little brother’s problem and he immediately had me tested for the same thing. Have been unable to afford the prolastin, although I was accepted for it just last week. My wife and I are self-employed now and the cost of medical insurance is just too prohibitive for us right now. So, I gave up my job and applied for disability in August. Awaiting word on that right now.

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First of all, this was the last thing I thought I would do. But, where I am at the end stages of this disease, I am reaching out to anyone that is at this stage or know anyone who is or was.
       My name is Ginny. I was told I had Alpha-1, when I was in my 30s. Of course, I kept on smoking and working and bringing up my family. Every once in a while I ended up in the hospital with pnumonia. I know as a child I had Pericadidus (inflamation of the heart lining)and I had gotten TB from my Grandfather. So, I started off with rotten lungs to begin with. After years of pnumonia, developing asthma, broncial problems and COPD, I had to stop working and go on disablity, ten years ago. I was and/or may still be, on the Mass. General transplant list but, choose not to have the transplant. I know, a lot of people were angry with me about my choice but, it was my choice. I just wasn’t comfortable with it.
       Right now, I’m 54 years old. In the past ten years, I’ve gone from 86 pounds to 173 pounds. I am having an awful time with fluid. I’ve started going into congestive heart failure, once before. My right lung has started bleeding off and on, in the past couple of months. My left lung, according to my last X ray, looks better than it did a year ago, go figure !!! All good news is welcome.
       I also know some of my problems are caused by Prednisone. But, I also know that Prednisone is keeping me alive. What a trade off !!!!!! I wish I knew how long I have and what else can I expect. It’s the not knowing that drives me crazy. I never was good about surprises.
       I must add, I do have the love and support of my husband, Norman, and my two children, Norman and Denise. I have four sisters and two brothers that are very supportive. By the way, everyone was checked for Alpha-1, no one has it. What are the odds? I told them all, this just proves my thoughts all alone, I WAS adopted !!!!!!!! My Mom still says no.
       Three years ago, my Dad died of Pulminary Fibrosis. He had it for four years, when it took him. I helped my Mom take care of him, his last two months. What a joy. We became very close and I got to be on the other side of the fence, being the caregiver and not being taken care of. Everyone should have that experience.
       Well, that’s my story. I would love to hear from everyone. My e-mail and phone is on the top.
GINNY !!!!!!!!

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I was diagnosed after my brother was diagnosed with Alpha-1. His doctor requested all his slibings to be tested, plus all the slibings’ children. Coming from a large family everyone choose not to be tested. Out of seven children, the three oldest were diagnosed with this terrible illness. My brother, who was diagnosed first, has since died. He was 40 years old. He had been suffering for years. He refused to quit smoking, he didn’t stop drinking until he would get sick everytime he would take a drink. It was very sad to see him go. He died of complications, what that means I don’t have a clue. I just took it as, Alpha-1 was not the only thing that killed him.
       Here’s my story: I realized I had Alpha-1 shortly after my brother was diagnosed. I had shortness of breathe all the time. I waited a couple of years before I finally went to the doctor for the test. It took me another year or so to get a pulmonary specialist and another year and a half after that to start polastin. In the interim, my father died, my brother died, and my mother had a heart attack then a stoke. Oh yes, I got laid-off in 1998. I went to bed and got up only when I had polastin. When I finally stopped feeling sorry for myself, I was 70 pounds heavier and not feeling any better, plus my health insurance had run out. Went back to my pulmonary doctor, he told me I was obese that is why I couldn’t breathe, not my lungs. Well needless to say, I went to work at a temp. agency in January 2000 and found another doctor through a friend I met through AlphaNet. The doctor was through Lahey Clinic in Burlington, MA, he didn’t have an open appointment until March 2000. This was the best thing I have every done. This specialist knew everything about what I was going through. He changed my meds and I started going to rehab. It was great to feel much better. I worked part-time as a Temporary employee for Polaroid Corp. from January to August. At that time Polaroid offered me a full time job. I am a Sr. Executive Admin. Assistant. Yes, I still can’t breathe as well as I would like, however, I am alive and working on making my life easier to live. I have choosen not to be put on transplant list yet. I met someone for the first time in person who has Alpha-1 too, it was great. I have talked to many people over the phone and via the Internet.
Thank you for letting me share.
Regards, Robin

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I was diagnosed with Alpha1 (ZZ) in February, 1999. My wife Vivian and I have tried to educate ourselves and manage this disease as best we can. We live in the San Joaquin Valley and have a small farm. We farm vineyard (Sun-Maid raisins) and have a few acres of apricots just outside Fresno. The air in this area is very dirty.
       We have two sons, Jake, 24, a deputy sheriff and Matthew, 21, a son who is still trying to find his way. Both sons still live at home. (Yes, this can be stressful, too.) Ever since I can remember, I have had this chronic bronchitis cough. We both smoked for a number of years. Six and a half years ago we quit. Thank God we did. It seemed once I quit smoking my allergies kicked in and my lungs were always full of mucous. Our “country” doctor for ten years gave me allergy shots and a prescription now and then and would send me on my way. I often spoke to the doctor about my emphysema, but the doctor didn’t do anything more than prescribe.
       I became increasingly worried and my wife suggested we seek the advice of a “city” doctor. Before this appt. I decided to get on the Internet and look up emphysema. This is when I first learned about Alpha-1. I decided I fit the profile, since it also said it was prevalent in people of Northern European descent and I am full Danish. After taking my history (I wasn’t a heavy smoker) Dr. U stated he was going to test me for Alpha-1. By the time of the next appt., I became very ill. I became so short of breath and so weak that Dr. U admitted me to the hospital. I was hospitalized a week. This is when we also first heard of a possible lung transplant.
       When I was discharged, I was on 2 liters of 02 and seven different prescriptions. I feel Dr. U saved my life and I can’t help but be upset with the “country” doctor for failing to diagnosed me correctly. What is so ironic is the country doctor works in a small town that is inhabited with many Scandinavians. I wrote him a letter to inform him of his misdiagnosis.
       Alpha-1 is not an easy disease to manage. I seem to have a problem with chronic congestion. There are good days and bad days. Seems as though my bad days are now out numbering my good days. I refuse to let it get to me and try to get out as much as possible. This includes “shopping” with my wife and fishing with my sons. I suffer from chronic congestion and am short of breath occasionally. I am not on any transplant list and am not on oxygen at this time.
       If anyone would like to email me, you can reach me at niel3@lightspeed.net.
       Thank you. Niel Jensen . . . March 18, 2001

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I have been kind of quiet on this list so far. I joined as a mother of three children ages 8 1/2, 6 and 4 ALL diagnosed with Alpha-1 ZZ. My oldest had problems with bilirubin at birth and he was about three weeks old before we knew what was wrong with him. They listed him (New England Medical Center, Boston) for a liver transplant but on his first birthday he had improved so much that they took him off. He has been checked every six months since then and the only problems have been slightly elevated LFT’s and occasional enlarged spleen, usually when he has a cold or virus. I had my other two children tested at birth and they are confirmed ZZ.
       I lost my husband when I was pregnant with my third child and started suffering symptoms of shortness of breath, weight loss, etc. I chalked it all up to the stress of losing a husband so young, being pregnant and STRESSED. Well it has now been almost five years and I am still having shortness of breath, coughing, etc. I finally went this week and got checked and the doctor confirmed I too have Alpha-1 ZZ type and my level was only 22. I am now to be set up to see a pulmonary doctor. SO it is all just beginning for me. I hope that I can learn more (I have already learned so much just by reading the posts) to take care of myself and talk to others in my same situation. I just got remarried and don’t feel “chronically ill” just short of breath on major exertion (except when I have a cold, then it is terrible) and coughing. . . . I can use all the information I can get and am SORRY it took me so long to write this.
Julie Doyle, Lung ZZ
Thanks for listening . . . and again I have been very quiet and am still soaking all of this in.

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I am 44, 5’10", 190 lbs. I have been married to a wonderful man (Rex) for 15 1/2 years. Have three boys, a step-son Mike 21, Kenneth 18 (not tested), and John 17 (SZ). We have a pit bull named Cinnamon, a real sweetheart that keeps me company during the day when no one is here. I have lived in Bandera most of my life (fifth generation). Bandera (pop. 877) is about 50 miles northwest of San Antonio. We live on 34.5 acres on the Medina River. I was diagnosed in 1998 and am lucky to have a pulmonary doctor that already had three Alpha-1s. He is now my primary doctor, too. I have a Scoop Transtracheal Catheter for my O2 which is 3 lpm at rest and a Port a Cath to get my IV’s (Prolastin). My last Fev 1 was 24%. I am listed at The University of Texas Health Science Center at San Antonio for a single right lung. I’m at the top of the list for my blood and body type. I have had one dry run, (the donor lung was bad) so now I know what to expect. I am on three email lists, but I mainly just sit back and listen. I am new to the web, but have made some real good friends.

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Updated Nov. 18, 2007

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