Joan provides advice for other women who are also living with pulmonary fibrosis, a fatal lung disease.
The first thing I would say to someone – get yourself tested by a lung biopsy because this is what most of the clinical drug trials require. To make sure the pathology was tested by a doctor in Boise, by a doctor at Mayo Clinic here in Scottsdale, and the University of Washington. I have this disease and then, from then on live the best you can, eat right.
I don’t know how long it’s been since I’ve had a doughnut and so on but, you are supposed to take vitamins, walk, exercise as long as you can, and just be positive about your whole life.
Now that doesn’t mean that you can’t get your financial papers in order, that doesn’t mean that you can’t tell your friends because they protect you. You walk somewhere and they will say so and so is ill, please don’t get anywhere close to them. Usually I just pick up and leave.
And so, you get to know that you trust your friends, the support group is wonderful, you read the information from the foundation. It’s now online and you can get the information from the coalition out of California online and we clean every bit of information we can.
Yes, some of the technical stuff as for the doctor’s but overall, you get what you can, but it sure gives you a lot of questions to ask your doctor and I believe that’s why it’s so helpful.
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