Mary Pierce was having a lot of trouble breathing and she didnt know why. Here, in her own words, is just part of her amazing story. At first I didnt take much notice of shortness of breath. Over the next few years I had a few bouts of really bad bronchitis, maybe even pneumonia. Id go to a clinic, to a doctor I didnt know, and Id get expectorants and antibiotics. I always had sort of a smokers cough, just like my mother. I thought Id just cough like this forever, but the people at work thought I was dying. Id head to the bathroom and Id just cough and cough and cough.
After smoking for a long time I cut way back, but I still smoked one cigarette a day. I couldnt give that one up. Eventually I was skin and bone and I looked it. Not a healthy picture.
At one point, I dont know when, I went to an eye doctor and he said, Theres something really awful with your breathing.
Once again I ignored it. I thought, Ive got to quit smoking. Nothings going to happen until I stop smoking. I just took all the responsibility. I took all the guilt on myself. Dont expect anybody else to help. Youve got to do it your own dumb self. My smokings doing it. So thats how I rationalized it.
Then one time I was all weekend sitting up, struggling to breathe in the chair, really struggling. I thought, Man, if I have to live like this I dont want to live anymore.
Monday morning came and I called the doctor. At that point I weighed 99 pounds. He took one look at me and said, Youre too young to have this much lung disease.
That doctor called Mary a few days later -- on her 40th birthday and said, I was right. You have this thing called Alpha-1 Antitrypsin Deficiency. Its inherited. Theyre doing some experimental treatment at the NIH (the National Institutes of Health). We can try to get you into a clinical trial.
That gave me some hope.
Then he said, Theyre also beginning to do lung transplants.
Transplants! Thats the one that told me how bad it was.
I can almost visualize myself standing in my kitchen, hanging the phone up, and saying to myself, OK, what do we do now? What do we do now to make this go away?...
Years later, after a remarkable recovery Mary advises, Everybody isnt going to have a lung transplant, thats for sure. But living with Chronic Lung Disease should be something like wringing out a dishrag. Youve got to wring every bit of life out of what youve got. There are many tools to help you get the most quality out of the life youve got left. If you choose not to have a transplant you can still make a lot out of the time you have to live. You can do it because it means the difference between sitting in your chair with your oxygen and wishing you could get out and do something, or getting yourself into shape the best you can, in spite of your awful lungs. It can mean going to the park with your grand kids or doing whatever it is that gives you joy.
Living well with lung disease is the personal responsibility of every patient who will accept it. We can do more for ourselves, physically, emotionally, spiritually. The only requirement is that we try
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