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Hi, yesterday I was told that I had tested positive for Alpha 1 Anti trypsin Deficiency. I must admit It came as a bit of a surprise as I am awaiting various scans to check for lung / heart embolisms, so hadn't given much thought to anything else. The good news, ironically, is that so far it looks like I have a very healthy heart!
The Doc is arranging genetic counseling for myself, my son and my daughter. I was also told to contact my siblings and advise them to get tested, and to ensure that their children are warned not to risk smoking.
Alpha 1 can cause emphysema even in non smokers. In ex smoking copd'ers like myself it can mean a faster than usual lung deterioration. The main thing now is for me to avoid even catching a cold to minimize any inflammatory processes.
The dear of a doctor who has been treating me has been so helpful and encouraging. He is a great believer in educating the patient so as to equip them with the knowledge to manage and fight their disease to the best of their ability. He also believes that the level of exercise someone does and the amount of muscle tissue they can hold onto / build plays as big a part in survival and quality of life as does FEV1 scores. He was saying how someone with a relatively high score of say 40 to 50% can be in worse shape and have a poorer outlook than someone at 20% who has seriously built up their muscle power, stamina and general fitness levels. SOB is also strongly related to lack of regular exercise.
I was a bit upset to learn that I had only lost four pounds in four weeks, as I have stuck to a 1.200 calories a day and worked up from two minute sessions on my treadmill to a minimum of a mile a day! I have also been doing upper body exercises including weights to strengthen my breathing accessory muscles and diaphragm as I had read that a weakened diaphragm played a major part in breathing difficulties. While I already feel some physical improvement, I am vain enough to care as much about getting my figure back. The Doc despairs of me! He is pleased that I am only losing a pound a week as he feels losing more would mean not gaining any new muscle, and he sees that as the major priority. I know he's right, but that means no sylph- like figure for at least a year or two. :cry:
Well, that brings me up to date on the medical front for a week or two. I have another hospital date for an ultrasound chest exam of some sort in two weeks time, but we now expect that to be OK as it looks like we have found the fly in the ointment with the Alpha 1. Sadly I will no longer be under the lovely Doc Rupert as he is putting me under some other thoracic guy from now on. I cannot thank Doc Rupert enough, he has done more , found more and explained more in two visits than all the others put together over the past year. What a Doc! And in spite of the pretty damming bad news of the Alpha 1, he has left me feeling more optimistic and in charge of my own destiny than ever.
Hope to bring you more details re Alpha 1, genetic counseling etc as and when it all unfolds. In the meantime, love to all my fellow copd'ers, wishing you all 'easy breathing' and many blessings, Vanessa xx :wink:
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