Suzanne's interview
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How did all start?
Non specific multiple symptoms, followed by expectoration of an alarming hard, brown mucus plug accompanied by wheezing, coughing and shortness of breath the likes of which I have never experienced. Had I not expectorated a mucus plug during my urgent care visit the following morning after expectoration of the first mucus plug and wheezing, there would have been no culture, no finding of Aspergillus in that sputum sample ABPA would have been missed and the mis diagnosis would have stood.
Do you already have a diagnosis? How long did it take you to get it?
Yes, I was diagnosed on Sept. 1, 2017- it took approximately 4 weeks from initial respiratory symptoms to diagnosis.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Allergy and Immunuolgy. This physician is highly skilled and competent. He is also board certified in internal medicine.
What has been the most useful thing for you so far?
Avoidance of moldy environments; steroids and antifungal treatment, non THC Cannabidiol (helps with depression and anxiety side effects from steroids and diagnosis); symbicort and albuterol inhalers when needed.
What have been your biggest difficulties?
Being essentially home bound to avoid mold exposure. Extreme fatigue and depression.
How has your social and family environment reacted? Have your social or family relationships changed?
I do not have the energy or desire to pursue social activities or interaction; I am not able to maintain the previous active outgoing lifestyle I once enjoyed with my husband and many children.
What things have you stopped doing?
Traveling, staying at hotels, retail shopping ( clothing dye is very reactive now), going to the gym (moldy environment), gardening, cleaning.
What do you think about the future?
I am deeply concerned about my quality of life and overall life expectancy.
So far, which years have been the best years in your life? What have you done during them?
Until diagnosis this past month, I would characterize the last 5 years as the best. Now that has all changed. The future is quite uncertain.
What would you like to do if you didn’t have your condition?
Travel, camp, garden, shop, keep up with my family, clean my home and have energy.
If you had to describe your life in a sentence, what would it be?
Always able to overcome obstacles at one point or another being a spiritual work in progress.
Finally, what advice would you give to a person in a similar situation?
Research, research and network!
